e-Patient Dave deBronkart

Change Advocate for Participatory Medicine / Let Patients Help, Society for Participatory Medicine

This conversation is closed.

"WHY is the patient the most under-used resource in healthcare?? How did that happen?" (Follow-up to LIVE TED Conversation July 27)

"e-Patient Dave" deBronkart is an advocate for patients being "E": empowered, engaged in their care, equipped, enabled, educated, etc. As described in his talk from TEDx Maastricht, he beat a near-fatal cancer, supplementing his great medical care by using the internet in every way possible.

Today, as blog manager and volunteer co-chair of the Society for Participatory Medicine, he has studied the social, technical and sometimes political factors that make healthcare ignore the potential of patients contributing to their care.

In his TEDTalk, he quotes senior physicians who have said for decades that patients are the most under-utilized resource in healthcare.

Why is that? How did it get to be that way? Is change valid? Why now, and not 20 years ago? And what can we do about it?

Watch the talk, and come back to discuss. *Your family* will be affected someday.

ADMIN EDIT: e-Patient Dave has requested that we keep this conversation open for 1 week. After 2pm ET July 27, he will periodically check in to answer questions and respond to comments.

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    Jul 27 2011: If you have a bunch of kids on a playground and you don't TELL them to do whatever they want, they will stick to very specific activities or ones they saw before.
    If you have a bunch of patients and you don't TELL them to ask questions, tweet each other, talk about their concerns, etc. - making a "safe zone" for patients - they will follow whatever the person ahead of them did. (see also: reports of people following the white lines on a road, rather than the path of the road)
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      Jul 27 2011: Whitney, another "thumbs up" - create a "safe zone" for patients, giving them PERMISSION to go crazy :) talking to others. My physician, Dr. Danny Sands, encourages other docs to break the ice by ASKING "Have you looked up anything medical online?" He says it's like introducing questions about drug use and sex so the patient knows the topic is not off the table and he's willing to discuss it.

      I love the "safe zone" metaphor.
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      Jul 27 2011: interesting analogy whitney. reminds me of some of the ken robinson ted talks about how we're trained to be good rule followers and not good critical thinkers in many education systems.
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        Jul 27 2011: Ken Robinson is a very smart man! ;)
        It was traditionally VERY disgraceful to question someone's statements in front of them. Now we are asking people to do so for the greater good. Quite a change for the rule followers of the day.
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        Jul 27 2011: I think following the person ahead of you without thinking first is awful.

        I agree with you on the discussion front. When facing bladder cancer as a family, we turned to a very small message board community of patients and practitioners all swapping support and interpretation of results/outcomes among one another. At times, I needed the other daughter-caregivers to educate me. At times, I needed the patients to educate me. At times, I needed the practitioners to educate me on making a decision or understanding a finding. The forum has now blossomed and formalized to be more helpful and more robust but it was an eye-opening moment for me to see that people WOULD come together when they needed it most.
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        Jul 27 2011: > We shouldn't be divided into patients and doctors fronts.

        Exactly! I'm volunteer co-chair of the Society for **Participatory** Medicine - see the description at the top of www.ParticipatoryMedicine.org - "a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners." It's about the collaboration, the partnership.
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      Jul 27 2011: Nafissa, that's a SHARP set of perceptions. You get some prize, on my planet.
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      Jul 27 2011: My MD, Dr. Danny Sands, is one of those who prefers proactive patients. ("E-patients: empowered, engaged, equipped, enabled, educated...") But many docs prefer passive. How could things have evolved that way?
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          Jul 27 2011: A doctor I work closely with is fond of saying that these days, he's everyone's second opinion. Google is their first. Patients are coming in with computer print-outs of diagnoses they think they might have, so that, on top of having to discuss with the patient their condition, the doctor also has to spend 10 minutes of that 15minute slot convincing the patient that they don't have the thing they found on the internet. There's a downside to "empowered" patients when we don't have to the tools to properly diagnose and care for ourselves, and I think this sort of behavior actually comes as a result of patients wanting to get a jump start on their very short, very stressful doctor's visit.
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          Jul 27 2011: Dianna, yes, dealing with printouts can take more time, especially if patients don't know what they're doing. But data from the Pew Internet and American Life Project shows that the vast majority of US adults ARE routinely seeking medical information online. And Time magazine had an item in January http://e-patients.net/archives/2011/01/is-the-culture-budging-time-reports-that-informed-patients-can-help-doctors.html where Dr. Zachary Meisel reported that a patient's smart printouts helped him reach the right diagnosis more quickly.

          Dumb questions are dumb questions and always will be. Do we tell patients to just shut up? Not gonna happen. (It may help to think about it in pediatric terms: do docs want parents to stop trying to understand their babies' conditions?) I say no; the solution is to enable, train, empower, teach the patients.
      • Jul 27 2011: I think the docs just got used to patients being passive, thus the family of the patients took note, continued the trend and the docs continued their part. Ditto Nafissa. My mom screamed and kicked and that is what I do.
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          Jul 27 2011: I also see your point Dianna, especially your last sentence; In my country I know that I have 10 minutes with my GP when I make an appointment. The way these appointments are scheduled are structured in a way to fit you out with a lable as soon as possible.
          A specialist has a bit more time, but by the time you see him or her you have been living with your health complaints or illness for weeks (or months) while waiting for your appointment. Ample time to have a look online to try and make sense of what is happening to your body. It is not a hobby to visit dr. Google. It is done because you are being scared, confused and worried.
          It might help if my GP when referring me would point me in a direction of solid good information about my condition or complaints. Even if my complaints are not yet properly diagnosed. Aknowlegde the fact that I probably will go online, and guide me.
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          Jul 27 2011: I agree with Ragna, and would add that doctors may feel undermined by the internet, so feel a need to be even more assertive than they did before (if that's possible). They may also know that many patients, particularly more educated people, seem to trust their doctors less than they used to - there has been so much publicity about doctor error and conditions that originate in hospitals, it's not surprising that people are wary.
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          Jul 27 2011: Julia, re docs feeling undermined by the internet:

          There's an important distinction here. In one view, docs are trained in at least two different things: medical FACTS and medical THINKING. As I mentioned in my talk, my PATIENT COMMUNITY had facts that many oncologists don't. But that doesn't make the patients oncologists!

          It's no longer realistic to expect anyone to know everything. More than 3,000 medical journal articles are published every day now, and besides, physicians are increasingly pressured to see more people. (In the US, the average family doctor has about 2,000 patients now! Imagine how many conditions s/he must manage.)

          In contrast to that, a patient or family has a far more limited set.

          That's why the video doesn't say "down with doctors" - doctors saved my life! (See my anniversary post last week http://epatientdave.com/2011/07/23/thanks-to-you-who-saved-me./.) It ends with the chant: Let Patients HELP.
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      Jul 27 2011: "But the problem is patients do not know how much they are capable of. "
      Exactly.
    • Jul 27 2011: i think demographics are changing as culture is for (e) patients as in empowered patients. a lot iot is in the open already, a lot is not yet. things will change in this decade, and technology will boost things in an exponential way
      Many docs like pro-active pat, but often they find inaccurate info on the web. as HC institutions we have to look in the mirror and clear things in our own "home" first, by putting it online in an understandable way, in a findable way, in a timely manner..
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    • Jul 27 2011: Nafissa, you're absolutely right about patient empowerment. We're entering a new phase of engagement, whereby it's essential to an individual's good health to be involved in their care and the cost of those services. i've worked in health care for 25 years, and there are several types of doctors and patient segments that run the spectrum of engagement.
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      Jul 27 2011: Nafissa you are very right with " this is something needs to be tackled from both sides: how we educate and train our doctors & how we encourage and educate our patients." I have way too much experience with Dr's completely disrespecting how very MUCH I know about my very complex case & preferring to diagnose something 'easy" they "know" & can be sent away medicated... Patients DO need to be educated & empowered--because no one can really know how a patient feels but that patient! IT USED TO BE you went to a Dr & then TOLD THE DR how you feel. For many years now..you go to a Dr, that Dr reads lab tests that may not even be YOURS...& then tells YOU how you feel...often missing the boat altogether...Patients who are mostly NOT trained in knowing how their own body functions go away believing what the Dr said...sometimes relevant sometime not..& usually being medicated...
  • Jul 27 2011: Maybe we should skip the word patient. Let's talk about TIFKAP, The Individual Formerly Known As Patient!
  • Jul 27 2011: In my experience, it's not just the patient, but the patient records that are underutilized. During my last three ER visits, all because of kidney stones and infections, the ER doctors largely ignored both me and the file and tried other diagnoses before treating the cause of record. The kidney ailment was easily verified by ultrasound, but the doctors wanted to check my gall bladder and non-existent appendix. One even accused me of being an alcoholic and tried to diagnose me with pancreatitis.
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      Jul 27 2011: Kitty, if I could hit thumbs-up 12 times on this, I would. You're right about the patient records. In fact the vast majority of HC in my experience has little to no clue, day to day, of how to make use of the medical record. MOST records contain outright errors - one of my x-ray reports identified me as a 53 year old woman!
      • Jul 27 2011: I thought electronic recordkeeping would help, but one of the nurses told me that, in this very new hospital, they had compatibility issues between the palm-top devices they purchased and the recordkeeping software, so they can't even use the portable system. Someone bought a fancy barcode reading system, and it is so cumbersome to use, it wastes time.

        Hospitals need to be far more tech savvy.
        • Jul 27 2011: Shiny cool tools is not always the best approach.
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          Jul 27 2011: Yes yes, Kitty: as electronic records start to roll out in healthcare (a truly massive industry) there will be some LONG periods of adjustment. It took the banking industry 10+ years to get it right - some of the early websites were comical. Healthcare is bigger, and the data is far more complex, so it will be IMPORTANT for us to keep an eye on our data - and our moms' data, and our kids' data..... PATIENT ENGAGEMENT.
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          Jul 27 2011: Agreed, John! (Good to see you here!)
        • Jul 27 2011: Just like it goed for some doctors and nurses : listen to what's needed. This goes for industry as well, a lot of push things hit the market that nobody asked for, but is send and showed to staff and administrators. Then brought into practice and not being used. so start with listening
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      Jul 27 2011: And it took 2 months to get them to fix it - they're not accustomed to patients pointing things out, and not accustomed to LISTENING to patients. It's all part of the same cultural question in this conversation: WHY are patients under-utilized?
    • Jul 27 2011: But what do you do if your records for a 6 year span are lost? Or even with this wonderful idea of EHR, the lights go out?
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    Jul 27 2011: Hey Dave -- my feeling is, this situation came up, in part, because it's just really hard to start the conversation about data with your doctor. Neither patient or doctor is comfortable with this yet; I know I'd have a hard time knowing where to start. Can you share some strategies for starting the conversation about data with your own physician?
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    Jul 27 2011: I agree, Shawn, patients became complacent - like a child in a classroom. Doctors became the teachers and we became the students. We didn't ask questions or poke around for more information in an effort to not be disrespectful to those in the field. Similar to what happens in some religious communities and practices.
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      Jul 27 2011: Great point, Whitney and Shawn, about us becoming complacent.
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        Jul 27 2011: I also think data and awareness has made us more complex and complicated. You used to call for the doctor, they triaged things and we all went on about our agrarian lifestyle. A patient like myself, with asthma, wasn't educated on lifestyle changes to improve health...prevention didn't really exist (ie: don't play with dust bunnies). Diagnostics and the rapid pace information flows at now are impressive. No single person can stay on top of it, so we need to re-educate people/society to embrace the ability to say "I don't know but I'll look into it"
    • Jul 27 2011: I agree as well Whitney, and the relation that we pay homage to people held of high esteem like doctors, clergymen, and government officials that surely wont do you wrong makes us lay back, even when red flags are sounding off everywhere.
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    Jul 27 2011: I'm a designer and I see this issue in the medical area from a design point of view. I ask myself (as a patient) questions like "Why not making that clinical history more usable for me?" "Why *my* medical information is just useful for the doctors?" "Why aren't we more involved in the decisions about our health?". If we -the patients- are the source and the end point of the decisions that doctors make based on our information, why can we be part of that system?
    Designers and doctors can work together in order to think of a new paradigm for the healthcare service!

    PD:Sorry my english! I'm from Argentina.
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      Jul 27 2011: YES YES YES, Eugenia! Design firms like Ideo are getting deeply involved in redesigning the care transaction. Also, WIRED editor Thomas Goetz gave a great TED talk about applying good graphic design to medical data. I'll paste in the URL in my closing statement.
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        Jul 27 2011: Thank you! And yes, I think the change is about to come. Great conversation by the way!

        EDIT: I just saw your presentation here in TED and let me tell you that you are a brave man! I admire you!

        Regards
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    Jul 27 2011: Dave,
    I have a lot of thoughts about the necessary and essential transition we're experiencing now.

    1) Culture - away from he "Dr. Welby" system where one person knew all. For complex and chronic illness it takes a team of people working together - not one individual.

    2) Physician training - reading Siddartha Mukherjee or Atul Gawande shows how the "physician centric" system developed. Changes are in progress and as a rule, are we finding younger physicians more willing to work with their patients? I hope so.

    3) Empowment - we see the role of advocacy in the breast cancer movement, starting in the 70's. We also see how it can go overboard when emotion overrides evidence. I can't stress enough how deeply I encourage women to seek info, ask, ask some more, and learn. If we aren't engaged in our own health, how can our docs give us their best advice?

    4) Portable info - check and double check. Agree on errors. I found them on bills, in reports, in a lot of places. People check their bills but not their medical records?

    Just a few thoughts...
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    Jul 27 2011: So, I'm starting to see one answer emerging over and over here, re "WHY are patients underutilized?" One answer: because WE DON'T SPEAK UP, STAND UP, ACT UP and ASK FOR IT.
    • Jul 27 2011: I once had a doctor who would answer any question... if you could ask it. He ran in and out of the room so quickly he was sometimes gone before I came out of "wait" mode and into an active analysis. I finally dealt with it by planting myself in front of the door as soon as he walked in. Once he COULDN'T leave, we were able to actually discuss problems.

      I understand the pressures on him, but why should this be necessary? Shouldn't the process start with an assessment and move forward from there? Should an assessment be "Well, she's upright and breathing, she can't be too bad. Next patient!"
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      • Jul 27 2011: You are correct Nafissa, patients do trust the doctors too much. Just think if Dave had not done any research. We would not be here today speaking with him! You may not have to be a skeptic as much as just ask some questions.
    • Jul 27 2011: Starts with taking up stages, using SoMe, write articles and tryo find ways to be head. Of all era in history patients now have the most tools ever !
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      Jul 27 2011: Less than 5 minutes ago: Sadly this is very true my mum passed away from Cancer 15 years ago. SHe knew something was wrong and the doctors kept telling her that is was nothing to worry about. She went to several doctors and indeed trusted them even though her gut feeling was that something was clearly not right. If only she had the online communities back then that we have now. It would have probably empowered her to speak up, voice her concerns and ultimately would have saved her. SO I truly believe it is emportant we help patients feel like they are worth listening to.
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        Jul 27 2011: Absolutely. I'm sorry about your Mum, too. How can doctors determine someone's treatment if they don't listen? It boggles the mind, doesn't it? But I know how often this happens. I'm talking with a 38-year old, recently diagnosed w/rapidly developing cancer, who PUSHED and argued for a mammogram because she felt "something was wrong." That persistence, that argument probably saved her life.
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          Jul 27 2011: Thank you, you are too kind. I think my mum's story is one amongst many sadly.
          I think in some bizarre way there is still some sort of 'tabou' between the patients and the doctors, and even between patients sometimes. This is why I think 'anonymous' online communities could potentially be life saving as people are more relaxed to talk honestly about what they are feeling and where and what exactly they think is wrong. This is especially the case with 'non-commercial' deseases, the ones ones is to 'ashamed' to talk about.

          She definitely did the right thing in pushing, it is her life after all, she is fighting for.
    • Jul 27 2011: But is that really ALL? Not standing up or failing to act? This has to be a two way street, there is something else we may be missing, but what?
    • Jul 27 2011: Not all patients are assertive... those that are not assertive are NOT STUPID. They just don't speak up. The attitude that we MUST be assertive to get treated as a human is OLD.
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      Jul 27 2011: Like the "unspoken" best practice we all adhere to within #hcsm - if you are an office that won't email with patients (and hopefully you also tweet/text/etc) for appointments, refills and labs - then we are moving along to the next office that will.

      We, as patients, need to do the same. If you aren't getting what you need from your practitioner - FIND ANOTHER ONE. Create the demand for better healthcare. The pack will follow.
    • Jul 27 2011: I agree that patients don't always prepare their information, and don't always speak up. But clinicians don't always listen, and don't make time or room for the patient to ask when the patient is ready. For example, a serious diagnosis is usually greeted with shock by the patient, and questions are only formulated much later. Is there a handout from the doctor, including written information summarizing the condition, treatment options, prognosis, and resources for help? In the hospital setting, one of the best resources for this is the medical librarian. Some forward-thinking hospitals are including their librarians in the team, as they can follow up with print information, websites, support groups, etc. when the patient is ready.
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      Jul 27 2011: I think it starts out with your starting position. Patient and physicians need to share and work together. It is like being on a climbing wall. You need someone to check your equipment, and secure your line. Though your role might be different, your goal is the same.
      The sharing part is the part that needs to be taught. Taught to the workers in healthcare ánd to patients.
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    Jul 27 2011: It is very common for a physician to think they know much more than the patient, but things are changing fast. With medical knowledge expanding exponentially, access to it on the internet, and especially with patients having access to each other, I believe we in the health care system have to change the actual system structure of how we care for patients and each other, and include them (actually ask them to be invited) on to teams and work together in a systems approach.
    I believe it is the structure of our individual physician practice and the hospital hierarchy and vertical department system structures that cause the patient to be such an underutilized resource.
    • Jul 27 2011: very well considered Bruce - thank you. The speediness of medical service is really a large piece of the imbalance it seems to me - A buddhist teacher put it this way 'Speed is the enemy of mindfulness. The antidote is being appreciative and observant of life's every detail.'. - Sokyam Rinpoche. This is hardly available in the 15 minutes generally provided.
    • Jul 27 2011: I don't think of myself as an expert on medicine. I am an expert on ME, and on the experience I had with a particular illness. And as an expert on me, I want my clinician to consult with me, not dictate at me.
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    Jul 27 2011: I think one contributing factor to patient dis-empowerment are the constraints that our insurance system puts on the time that doctors can spend with patients. There's very little time for doctors and patients to really talk!
    • Jul 27 2011: Dianna, that is a great point. If patients and doctors are pressed for time and patients are underutilized, how can they become effective collaborators in health care?
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        Jul 27 2011: Lindsey & Dianna, this "insurance constraint" issue is exactly why concierge medicine (direct pay, unlimited services for a flat rate) is coming back into fashion. The more expensive insurance gets, the more people are saying "screw the system." And as a child of the Sixties, I have no objection to that. :)
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        Jul 27 2011: AND, btw, concierge medicine is no longer just for the rich, e.g. $10k/month. I know a group of docs whose members mostly charge < $150/month for unlimited office visits AND most prescriptions are free, bundled into it.
        • Jul 27 2011: To me, $150/month is mighty rich.
        • Jul 27 2011: patient is underutalized because this kind of a solution is hard to know it exists. And it doesn't exist in all markets. Small markets, force me to large solutions.
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          Jul 27 2011: I'd like to learn more about this, Dave.
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          Jul 27 2011: But I don't want this to be "concierge" I want it to BE PATIENT CARE.
        • Aug 10 2011: What community is this membership medical located? I would like to study it. I pay more than that per month for insurance. I'm blessed to be able to afford what I have chosen. Do you think it provides high quality care? Would LOVE to learn more.
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      Jul 27 2011: Agreed, Dianna - insurance is a very limiting factor. But the point of our question here - why are patients under-utilized - was true 40 years ago, before insurance started running healthcare. Puzzling, eh?
    • Jul 27 2011: What does that mean Diane, TIME to talk? Is that why they move so fast and act so distracted and you remember the things you should have asked after you left the office? Is that on purpose?
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        Jul 28 2011: Tracie, re "remember the things you should have asked after you left" - e-patients commonly tell each other to write those things down BEFORE you get there. In my case, I send them in by email before I even go there.

        The cancer described in my video was discovered during a routine annual check-up. I had prepared for that physical by sending my doctor a note describing the 12 things I wanted him to know about. Reading is faster than speaking; and we took care of some so quickly that they consumed NO time during our meeting.

        He says he LIKES it when people send their "agenda" ahead of time, because he has his own agenda, too, so it lets him prepare for the meeting better.

        We do this with other professionals, or in day-job meetings; why is healthcare so backwards? C'mon, let's modernize. :-)
    • Jul 27 2011: this is very true - ie no real relationship and empathy can develope ...
    • Jul 27 2011: Indeed - This speedup is really one of the key problems. I posted this quote from a wise teacher in another conversation - Mindfulness being - paying attention to what is truly happening - on many levels... "Speed is the enemy of mindfulness. The antidote is being appreciative and observant of life's every detail." Doctors could also learn to be trained in the techniques of listening and responding in the most appropriate ways - during medical school. - and the ethics involved in giving this kind of attention. There are many fine doctors out there!
  • Jul 27 2011: Yes HC has became a eGo system and we have to get back into an eCo system !
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    Jul 27 2011: I believe that the patient is the most under-used resource in healthcare because doctors and other health professionals maybe believe that we (the patients) don’t know anything about medicine or different healthcare problems. It’s a sense of I have the degree that says this is what I studied and you don’t so there is no way you could know anything about this kind of thing.
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    Jul 27 2011: So, John, these are indeed huge issues, and I'm not expert in any of them - weightier bloggers than I am continue to thrash this. To me they're legitimate hurdles BUT THEY ALL PREVENT US FROM MOVING FORWARD, so I want us to get past them.

    Quick answers for US users:

    1. In the US the data is NOT the property of the institution. People who say that are lying (which does happen in some cases) or misinformed (a much more common situation). Since 1996 the data has legally been the patient's property. See this HIPAA flyer, with a built-in Seinfeld episode :-) http://epatientdave.com/2010/04/23/elaine-and-kramer-play-gimme-my-damn-data/

    2. Cost: the HITECH portion of the US stimulus bill (ARRA) provides $40 billion of incentives and rollout funding. As you may know, tons of work is going into this. At first there are incentive payments; 5 years from now there will be penalties for providers who don't do it.

    Mind you, all of that applies only to government insurance payments. Providers who don't accept government insurance are unaffected.

    3. Security: yes, lots of people are discussing this. The bottom line seems to be that data breaches happen all the time already, including on paper - last year a Mass General employee took a bunch of work home and left it on the subway car. This is a valid issue but I believe it shouldn't keep healthcare back in the pre-electronic era.
    • Jul 28 2011: HI Dave,
      Thanks for your response.

      I am among the bloggers and blog readers that thrash those issues on a regular basis. I tend to agree with your analysis, although I can point you to many who would disagree. I asked the question because I wanted to test a knowledgeable and well informed patient for responses.

      My experience has been that being a well informed "medical shopper" is not very popular with the providers. You are doing a great thing by building empowerment, but we must also figure out how to meet the expectation for complete record delivery in a secure manner - and then get all those who feel you are only the "specimen" (or perhaps specimen container), to agree on the ownership issue. A complete record crosses many systems and providers who must all "buy in" in one way or another.

      There is no doubt we have the technology to enable delivering at least most of the data to the patient. The problem will be lack of sufficient motivation (HITECH Section 170.304(g) is woefully inadequate), the complexity of assembling a complete record, and the perceived risk in the medical and legal community. We must work at both the technical and legal levels as well to be able to truly "give you the data".

      Patient empowerment is a god thing. I have shared your Ted Talk with many in the medical community to help them understand why patients should be empowered and allowed access to their data since I ran across it in June, but, unless we have popular opinion on our side, the barriers will remain for many years,
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        Jul 28 2011: Great to hear from you, John! Did my response pass muster reasonably well? :) (What's your blog? I don't recognize your name!)

        I agree about providers not being thrilled with the idea that consumers/patients might go somewhere else if they can easily do so! They also (as I'm sure you know) strongly resist publication of each individual hospital's probability of accidentally killing patients, hospital-acquired infections, etc. I say, if my daughter or wife is going into the hospital, she and I have every right to know which hospitals are safer.

        And, I say, re data quality, Let Patients Help there, too. My primary physician points out that patients (and their families) can be a second set of eyes. (What good is data that's been put in a system wrong? Or on paper? Let's proofread, within our skill set.)

        Re popular opinion, well, that's the work we're doing. I have the fun of talking to physicians and policy people as well as patients, and there's a growing community of patient advocacy organizations.
        • Jul 28 2011: Hi Dave,
          You passed muster very well. Your primary phys has it exactly right. I think providers are somewhat bothered by the idea of consumers going elsewhere, but I find their motivations and comments to be all over the map. We have made progress from a comment I heard about 10 years ago from one CIO who said "I'll allow third parties to access my data when they pry it out of my cold dead hands." In his defense his argument was purely based on security (and quality) of the data for the patients. Some I talk to often speak of their "work products" and getting paid for their "value add". These people I find hard to deal with.

          I don't have a blog so you are much more likely to find me posting comments and questions on other people's blogs. I spend most of my time in dark corners writing technical papers and white papers trying to move the technology along. I actually avoid the very issues I spoke out on here for what I will term "professional" reasons (read as I don't want to make the wrong people angry). In this case you moved me to speak up with your excellent and rational TED talk and this discussion.

          The great news is we are making slow but steady progress toward your goals. My belief is that we must make this a mandatory responsibility of the payors, but I also believe the path to success will be to get them to agree that the investment will, in the long term, make them money in the form of better outcomes and lower cost for those outcomes. It's a tough sale though. Please keep up the good fight on the awareness front. We'll get them plumbing in place soon enough, but we must overcome the belief that others might know best when it comes to our personal health care decisions.
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        Jul 28 2011: Well, it's a pleasure to know you, John. Thanks for your kind words. Everything you say (about the present and the future) resonates with what I've seen too. Keep in touch.

        The Society's blog is http://e-patients.net, my personal website is www.epatientdave.com, and on Twitter I'm @epatientdave. Both sites offer e-mail subscriptions.
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    Jul 27 2011: Question: Do any of you know of any patients who HELPED their doctors by bringing useful information to them? There was one such story in Time last winter - a doc wrote that his patient brought printouts that helped him make the right diagnosis faster. You?
    • Jul 27 2011: Hi Dave, Great topic. We see all the time in our online support communities--particularly in rare disease communities--the references to patients informing their docs of useful information that resulted in better outcomes for the patients. Joyce Graff of the Boston, MA-based VHL Family Alliance, an advocacy group for a rare genetic disease, definitely is one person I'd cite. (Her org has online a printout called, "8 Ways to Help Your Doctor Save Your Life http://www.vhl.org/press/presskit/index.php.)
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        Jul 27 2011: John's being modest - his *hive* of patient communities at www.inspire.com is phenomenal. And yes, Joyce's story is terrific.
        • Jul 27 2011: Dave, Thanks. And I'd like to add that those interested in online patient communities should go to your blog at http://epatientdave.com/communities/ to browse--and add to--your growing database of patient communities. You explain it better than I can, but we see all the time that patients draw from support groups not just clinical information and practical advice that they can use in managing their diseases, but they draw emotional support and encouragement too, which is like fuel for empowerment.
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      Jul 27 2011: As I said previously my mum did this and was determined to do it but all her efforts were ignored. I really hope this no longer happens, or less so as I imagine that patients are somewhat more informed today than they were 15years ago
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        Jul 27 2011: Toni, I've heard many stories like your mum's. Sad. I very much hope that the "Let Patients Help" message will spread like wildfire. WE NEED TO CHANGE THE CULTURE so doctors realize patients CAN bring useful information to the table.
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          Jul 27 2011: Indeed, sadly I think that this needed attitude will take longer in the EU than in the US. Thus we need to push more in the EU and hopefully the Commission will do just that
    • Jul 27 2011: I informed my doctor of a much better iron supplement than he prescribed for me - sending a link to Hemaplex - which is supplement , non constipating and preferrable for getting ferretin levels up. He was agreeable and even grateful to know about it. this is small but worthy.
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        Jul 27 2011: Great, Jenna! My doctors too, at Boston's Beth Israel Deaconess, have an open mind about supplements and alternative treatments. It's very participatory and empowering: they figure if we the patients feel that something is helpful, and there's no particular reason to go against it, then why not go for it?
    • Jul 27 2011: All patients bring useful information to their physicians... yes, all of them - themselves the data about themselves contributes to every diagnosis.

      If you consider treatment frameworks like a map for a given disease, built with the medical body of knowledge, (a la google maps - where road signs are decision points / probable outcomes), and you're asking which patients have contributed to the map... about 7% (I wish I had a good reference for this number)... the number of patients willing to participate in clinical trials and studies.

      This topic is subtly tricky because "signal to noise" is challenging. Small N's (trial sizes), the placebo effect, and sheer system complexity all serve to confound the message. I'm generally a believer that more solid information is better than less, but Daniel Arielly makes an interesting system cost case for using placebos.

      What framework could propel the "Patients can help" framework forward but protect it from itself? Beyond tools for just discussion, tools to manage signal to noise. Assembly is a useful first step, but filtering, resharing, perhaps conducting network designed clinical studies? Would a well defined collective voice sway more cooperation from the medical community and expose gaps between how physicians treat themselves versus their patients (http://www.medscape.com/viewarticle/740626)?

      Coming back to your original question, I've heard of many prescription correction instances, like potassium supplements when taking a non potassium sparing diuretic.
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        Jul 27 2011: Great additions, Malcolm. Thanks! Yes, my primary (Dr. Danny Sands) often says in his talks that he's the expert with the medical training, but the patient is the one with expert knowledge about their own body.
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      Jul 27 2011: I have a good understanding with my psychologist. I bring medical reports (in this case about fatigue and PTSS in subarachnoid haemorrhage survivors) to her attention, and she reads them for me so we can filter out what can be useful for me.
      It than loops back as she finds follow-up information on the path that I started her on.
      Also, the books about my condition I found on an international forum are now on the standard book-list at the rehab center. Thanks to my doctor.
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        Jul 27 2011: It sounds like YOU are not an under-utilized resource. Hey, could you paste in a link to your talk from TEDx Maastricht? I loved it!
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          Jul 27 2011: Thanks! And..True. Being a healthcare worker that tried to empower her patients in mental health it comes natural to me to try and work together. After becoming a patient myself though it took quite some time and a lot of agonising effort before my doctors realised and believed that it was ME speaking and not the brain injury I sustained.
          Here's the link from my TEDxMaastricht talk: http://www.youtube.com/watch?v=7_f49qyRuy8
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        Jul 27 2011: Okay, everybody, do watch Ragna's talk from TEDx Maastricht - "This is your captain speaking" - the captain of HER own care. Are you the captain of yours?
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      Jul 27 2011: I became an "E-patient" in the very early 90s, not knowing that I was doing so. Plagued by mis-diagnosis for a worsening neuro condition (looked like MS, but wasn't) drove me online where I was fortunate to have open access to all of Medline (via CompuServe where my old pal Dave deB and I first met).

      I still remember debating MedLine cites with the chief of neurology. He had space for a savvy patient to offer evidence, but not enough for me to actually be correct. He "bet" on the outcome of my MRI. He did not win that bet. Months later I finally got the referral to the infectious specialist I really needed to see.

      Today I am still dealing with neuro deficits that might not have happened otherwise. All of it left me an ardent advocate of patient ed and collaborative healing. I love it that Dave has now made so much headway with this cause. I also love that we are now seeing so many more open MDs in the Next Gen of physicians.
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      Jul 28 2011: I have to say I'm so tired about filling in all those forms about my previous operations, diseases, potential allergies... every time I go and see a new doctor. It would save so much time if I just had all this data on a chip card in my purse. I also sometimes fear I might say the wrong things when doctors ask me about some of my previous illnesses: was it measles or chickenpox I had when I was a child? Did the cyst in my throat have tubes to my blood vessels or to the lymph nodes? Which type owas my grandmother's diabetes? How many surgeries with general or local anaesthetics did I have and do teeth also count? Is my natural wound healing really as good as I think it is? Just some examples that came into my mind.

      All these things... and so many more that could give my doctor reliable information about my health and my history as a patient. It would prevent so many misunderstandings! I don't feel like I want to have secrets about my health when I go to see a doctor, I want him (or her) to understand what kind of patient I am (scared or not scared, open for alternative medicine or not... whatever you can imagine).

      I also want to be able to look up my conditions in an online databse myself and to find information on what I could do to maintain a better and healthier lifestyle. If I know there is a tendency to diabetes in my family, I could change my nutrition based on that. Or if I have stomach pain due to stress, I could look up whichnatural medicament helped my belly relax last time I had this.

      It could be SO easy. It could be organized and maintained on an international basis. It could be encrypted, everyone could get a number instead of being listed with their names. Login information could be saved on a chip card, or you could get PINs and TANs, just like for online banking.

      It makes me angry that in our networked society, this has not happened yet.
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        Jul 28 2011: Hi, Simone - yes, this industry is WAY behind the times. You touch on many things that will be easier when our records are online.

        I myself am not a student of the many PHR (personal health record) products that are out there. I'd like to INVITE SUGGESTIONS, even from vendors, of products people can consider. (The best would be from patients who've used them, but as I say, vendors are welcome to list theirs. No promo! (No "the best..." or "the only one that...") Just list it and say who it's particularly intended for.)

        I'm going to refrain from even mentioning the ones that do come to mind, because I"m not endorsin' anything - except the desire people have to be RESPONSIBLE FOR THEIR HEALTH. For heaven's sake, let patients help!
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    Jul 27 2011: I'm enjoying listening. I've been a health care observer and unwilling participant for years; became an epatient in l998 with a cancer diagnosis. My "robust" suspicion helped me enormously. Now I find it imperative to try to help women newly diagnosed with cancer to find the information they need to make informed decisions. Forums like this are fantastic.
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      Jul 27 2011: Hi Jody - welcome from Twitter! Got any thoughts on the QUESTION at hand?? :-)
    • Jul 27 2011: Jody, so glad to hear you're helping others. Our website is building a mentorship program where experienced patients can mentor newly diagnosed patients.
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        Jul 27 2011: Sarah,
        I'll be there to check it out. That's terrific.
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        Jul 27 2011: Do you have a link, Sarah? One of the difficulties is that there are so many different platforms evolving and keeping up with them. We also have a twitterchat on breast cancer - #bcsm - on Monday evenings.
  • Jul 27 2011: I think that the patients today have evolved and advanced over past patients. We are now more informed, and more capable to handle being an active participant. Not that there was not bright patients 200 years ago, more that there are simply a far higher percentage. tipping point.
    • Jul 27 2011: this also depends on demographics...and education i do agree with you. there are so many alternatives and ways to learn abot lifestyle and the bodys health (Yoga/Ayurveda/Chinese Medicine/Martial Arts/Meditation etc...)
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      Jul 28 2011: Again, Moehrke, you get the prize. Spot on!

      I'd just add that in addition to being better educated, we now have access to valuable information. Combine better-educated with better access, and voila, the unexpected can happen.
  • Jul 27 2011: Do you believe young doctors in training are getting this concept, or is that generation of physicians ignoring the patients' knowledge and importance?
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      Jul 27 2011: EXCELLENT point, Ellen - some docs have told me they ARE trained that "patients can't handle the truth." Others have that pounded into them during residency, and others afterward.
      • Jul 27 2011: ere we have to act strong and fast as HC we have to educate freshmen to understand the tools as wel as the shift that is happening. in the "old" days knowledge was only accessible for the pro's (goes for HC as wel as lawyer, accountancy etc) with the internet now, and upcoming transparency this is going to be completely different. Argumentation as in HC is different from i.e.l travel, banking or music industry is rubbish.
        • Aug 10 2011: AGREE! Open Courseware is available for FREE online now! iTunes offers lectures from legitimate institutions. Many universities, including MIT offer free classes, as well. When I'm in need of information that I don't currently have the knowledge of, the internet is my friend and often my 1st source. Not all on the web is credible, but I expect that MIT or East Tennessee Univ, or any otherwise reputable source of information/education can legitimately help me fill in the "blanks". Some expect HCP's to know EVERYTHING about their problem. Sometimes, that's impossible. Why do drs feel so insulted by a person educating him/herself? "I don't know, I'll get back to you" makes me feel important & worthy. The 21st century has arrived, I don't always like it either. Transparency is good. Our doc recognizes our tech savvy and has gone so far as to cite journal articles to support his HC decisions. Guessing that he doesn't offer that to all, only after an interview of pt to see how much info is too much or how much the pt actually wants to receive. Seems like a good practice.
      • Aug 7 2011: This is such a sad reality! e-Patients need to revolt and say this is not acceptable - work with me! If HC providers won't discuss, then we (e-patients) need to stand up and say, I will not be returning to you!
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      Jul 27 2011: So, aside from plain old arrogance, any thoughts on how that could have come to be part of the culture? (ASIDE from arrogance)
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        Jul 27 2011: Back in the day...
        You trusted the post master to give you proper postage.
        You trusted the butcher to give you the right cut of meat.
        You trusted.
      • Jul 27 2011: We had a less educated population than we do now, and a paternalistic system of care. Having a peer-based conversation with an expert is still frightening to many people. Studies show that if patients aren't comfortable with the information, they won't ask questions or engage -- they'll play the passive patient.
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          Jul 27 2011: Sarah, more gold stars, and maybe some confetti!

          >>> We had a less educated population:

          Yes, especially 100 years ago. Imagine: today's most senior physicians were trained by docs who were themselves trained 100 years ago. They kept experiencing conversations with patients who almost entirely had no access to medical information. Si?
        • Jul 27 2011: Education is part of it Sarah, but we also had a less lazy culture than before. Prevention and followup are tantamount in this health care thing. Another point is that Western culture has a pill for that every where you turn. I think comfort should be a word never used in healthcare cause that means one of us is not needed!
      • Jul 27 2011: Maybe some docs rely on data from tests rather than data from the patient. Patients may feel better or be able to do more on a certain drug, but that difference isn't reflected in a test performed in the clinic.
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          Jul 27 2011: YES! There's an axiom going around, "Treat the patient, not the chart." Docs are reminding each other of that because they keep realizing they depersonalize the care.

          Many feel that patients' self-observations are lower quality than lab tests. To me those are two different dimensions.
        • Jul 27 2011: Has anyone heard of functional medicine? I came across it recently and spoke to my physician who is a DO about it. She had just gone to a conference with Dr. Mark Hyman. Many allopathic doctors don't treat individual patients, but conditions. Functional medicine looks at more than personal medical history to interpret what you need to heal. Interesting concept.
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          Jul 28 2011: Yes, Sarah, a functional medicine guy spoke last fall at TEDMED. Good presentation. And I liked its focus on what the PATIENT wants to achieve, not what the microscope sees.
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        Jul 27 2011: Being forced in the tredmill of bureaucracy doesn't help either I guess...
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        Jul 27 2011: I remember being called to my grandparents house once. They were both ill. Just a flu, but after a week that's quite enough when you are old. They dragged themselves out of bed to tidy the house before the doctor came. Then they were lying in bed in their best pyamas and only answered when asked something. They wouldn't have told the doctor that they were both coughing horribly for weeks if I hadn't thrown it into the conversation. He didn't ask....

        Times are changing!
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          Jul 27 2011: Great anecdote, Ragna. It shows (1) patients may HARM themselves if they don't speak up, (2) you as a family member made a difference.
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      Jul 27 2011: I also know part of training is what to educate a patient on and what to reserve from the patient to retain their optimism since it is a driver for improved health outcomes. For example - my bonusmom had bladder cancer and it had spread quite dramatically. We were TOLD it was spread to 3 small sites, "not a problem to treat" was also added. Driving with a sealed envelope of her med records and a disc of images to her next hospital, I ripped it open and found out the cancer was in FAR more than 3 "small" spots - closer to 9 - and they were not small at all, "untreatable" was marked in a note. UNTREATABLE. Later, when we heard she had 72 hours to live and it was in her brain, I was the only family member that knew docs had that information (in the brain) a week earlier and had withheld it.
      • Jul 27 2011: Hey Dave,
        Relating to the statement of what to hold back from a patient, would that have helped you in your quest to live if the docs had held back? Do/don't you feel that holding back would have literally killed you? Optimism with no truth behind it surely cant be labeled as such can it?
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      • Jul 27 2011: yes ! thats why we have to educate freshmen AND the what i regularly call "the sitting crew" as well.
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        Jul 27 2011: Nafissa, yes, that's what also said to Whitney and Sarah a minute ago. Generational transmission of old attitudes.

        This will take CULTURE CHANGE.
      • Jul 27 2011: I think that we forget that medicine evolved from an oral history and the difference today is that we write things down for anyone to readily access.
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    Aug 9 2011: Hi Dave, what do you think about starting some kind of E-patient thing on TED.com?
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      Aug 10 2011: Hi Jimmy - what do you mean by "some kind of e-patient thing"? There are almost 300 comments here already - isn't that a "thing"? :-)
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        Aug 10 2011: Well, yes.. It's a thing... what I meant was MORE of a thing, like a devoted TED project to it... Education and health are among the biggest topics on TED and we already have (well, it's kind of new yet) TED-ED http://education.ted.com/ ... shouldn't we also have TED-MED? A place where we could make a true "E-patient revolution" by guiding the almost 1 million TEDsters to better health...

        What I'm purposing is something like many of the website links that have been shared on this conversation... but in a TED format.
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          Aug 10 2011: I didn't realize "TED projects" exist, nor education.ted.com. How marvelous! Yes, I'd LOVE to start a few fires in this area. The field needs a SLEW of new thinkers.

          "TEDMED" is a separate event licensed by TED - can't use that name. But the point is health, not medicine - the healthier people are, the less medical care we need! So maybe TED Health?
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        Aug 10 2011: I get your point about Medicine vs Health and I think TED Health would be a great name for such a project!
        There is so much that people (myself included) don't know about TED, but I am one who's trying to bind as much as possible of it together... So I scout and scout and read and and watch and press as many buttons as I can manage to keep track off.
        I also try do provide valuable information to the people that I think will use it in the best way, that includes guiding people on TED without them asking... And perhaps sharing some of my favorite medical/health TED Talks here will inspire you (and others to new ideas).
        So here are two Talks that I really think you should watch:

        Anders Ynnerman: Visualizing the medical data explosion http://www.ted.com/talks/lang/eng/anders_ynnerman_visualizing_the_medical_data_explosion.html

        Daniel Kraft: Medicine's future? There's an app for that http://www.ted.com/talks/lang/eng/daniel_kraft_medicine_s_future.html

        Also, here is a link to the Theme "Medicine without borders" It at the moment has 78 Talks (where your Talk is included) that should all be worth watching... http://www.ted.com/themes/medicine_without_borders.html

        Hope I didn't drown you in information here...
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    Aug 1 2011: Hello Dave. I want to thank you first off. For standing up for such an important thing. And ask you a couple things. My mother recently passed away, July 6th. And she passed away after a long fight with something called interstitial lung disease. Now, for the majority of her illness doctors misdiagnosed her with pneumonia every time she would be brought to the hospital. Put her on antibiotics and high doses of prednisone and off she would go. They thought the antibiotics were helping her. When really the prednisone was. In late 2010 I was searching the web for reasons why this would keep happening to my mother. And interstitial lung disease popped up. And matched her illness perfectly. I brought it up to a doctor. And was told "Let me do my job." After it was all said and done, and my mom passed away. I was met with a surprising cause of death Interstitial lung disease.

    I agree with the patients having more power. But my question is. Do you think family should be aloud to be more involved in the process of diagnosing as well? Because there were treatments my mother could of had options to at least try if this was caught sooner. Or even just considered. Not saying it would of been some miracle cure. But at least something could of been done other then treating for pneumonia every time and sending her home with nothing other then pain medicine for her pain.

    Again, I want to thank you. Because I strongly believe in this. And I am going to be going to college this year to become a Respiratory Care Specialist because I want to help prevent situations like this.

    - Jamie from Ohio
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    Aug 1 2011: It was so encouraging to hear your story and to read your comments. It is strange that the patient is underused. Possibly through tradition. Having been born in the UK with the NHS and not really seeing your own medical data or even touching it physically in your own hands, it was strange at first but refreshing to now live in Turkey where you are responsible for keeping your own medical data. It is not stored with the doctor. With the system here I have become much more knowledgeable about my graves disease and autoimmune issues which cannot be cured only controlled by medicine. I look up the test results on the Internet and consult the wider Internet community about my health. Just having access to that data pushed me to take control of my health and my life. I also gave birth to premature babies in Turkey at a time when my Turkish was not so good and again it was the e-community that provided advice and help about medical care. I spoke with a doctor friend here in Turkey about e-health etc.she said it is ok if you are 'educated' to look at the Internet and if you know where to look. However for some of here patients she tries to persuade them not to use the Internet because they sometimes turn to dangerous treatments. However, although she is not convinced yet she also has a real opportunity to help those patients become empowered patients rather than shutting down this need to research on the Internet. Perhaps it is health care providers who need to learn how to empower their patients. With empowered patients imagine what the health care system could be like.
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    Aug 1 2011: So, let me guess .... you're in favor of this "Let Patients Help" thing, yes? :-)

    IMPORTANT: people should note that Vera's words don't mention the internet. BEING AN ENGAGED, EMPOWERED PATIENT IS A SEPARATE ISSUE from whether you're online. Lots of online people are disempowered wimps, who don't engage in their care.

    Let Patients Help sometimes involves the internet but the internet isn't the point. The point is being engaged in your care.

    Good for you.
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      Aug 1 2011: Totally in favor of it, Dave. Back then, my insistence on engaging in the treatment of my own terminal diagnosis was considered radical by traditional oncologists and surgeons.In the first few weeks of me interviewing my future team, several turned me down, flatly insisting it was not my place as a patient to have any choice in my treatment, period.

      When my team was finally assembled, we had 5 weeks to save my life. As the journey and treatment progressed, I had to accompany every visit, surgery, etc. with a legal document from my attorney just to obtain MY MEDICAL RECORDS; about me and paid for by me. And thank heavens I did.

      On several occasions my records were either incomplete or inaccurate. I would have them corrected immediately.

      I ended up carrying around two 6 inch leather notebooks, full of records, test results, and data to each of my 12-15 appointments every week. I believe my insistence on my patient involvement was integral to having all the physicians and practitioners make better and more informed decisions about my treatment.

      And essentially, the creation of my own "survival roundtable" is why I am still here to tell the story.

      It would be great to have a personal medical QR code (perhaps an implant chip?) that could be easily updated. Love your rap and your Google+ personalized body data idea! Go Dave!
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    Jul 28 2011: Hey Dave,

    Would you agree that is has a great deal to do with how much "Western" medicine relies upon the symptoms in order to treat an illness rather than on the cause itself? It seems to me that in many cases illnesses develop over a period of time due to the future patients actions, behavior and lifestyle. However, when one goes to a doctor practicing "Western" medicine, it seems they are treated more like the body than the consciousness. I don't mean to get too esoteric in saying that, but I mean that said typical doctor looks at your body, asks you how your body has been feeling, uses various tools to inspect what the body looks like compared to a healthy body; then they prescribe something based on the physical symptoms and send said patient off. This medicine may treat said patients symptoms and periodically get rid of them, but if said patient isn't involved as an active and capable participant in their illness, and their lifestyle and actual being are not considered, what is to keep said patient from EVER changing the behavior that may have led them to the illness in the first place?

    It's very interesting to consider how many Chinese medicinal practitioners interact with cancer patients. In certain cases cancer patients are required to move to the health facility, they are with other cancer patients. They are put in a place where their diet is changed, they must practice physical fitness, and their entire life is assessed along with their illness. It seems to me to be a much more thorough form of health care.

    After all, health is not only determined by the body. Plenty of physically fit people are miserable after all, and they aren't all bipolar/chemically imbalanced either.

    Thoughts?

    Thanks Much!
    Sanyu
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      Jul 28 2011: Hi Sanyu - great response to the question! (A lot of comments here are about related issues, but aren't seeking to hit the nail on the head. :-))

      Honestly I don't know enough to agree authoritatively, but my gut says that the issue you cite - medicine being what we might call overly scientific (??) - is a factor. I do know numerous physicians who've said they were TAUGHT to stick to excellence only in their specialty, without a word about the whole patient; and I know of numerous cases where families have told me their doctors INSISTED on improving what was in the microscope, rather than in their lives.

      Perhaps your answer nudges up against mine: I suspect there's a belief, perhaps even a cultural myth, that the path to better health is through more and more intense science. If that's the belief, then what on earth could an unschooled patient contribute?
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        Jul 29 2011: Hey Dave!

        If you have been ill and a patient, and now you are better and aware of your illness and what part you played in getting better (or getting sick); I would argue that you definitely are an "authority." While typical self-diagnosis isn't necessarily "professional care," that is not to say it isn't valuable! Nobody who is unwell is going to get better if they do not want to get better (case in point: Amy Winehouse), so I would say that each ill person has a lot to do with their own healing/illness process.

        I would agree that "Western" medicine relies too heavily on its "scientific accuracy." People existed before many of them knew what the hell science was, and as well as science may help us understand how we technically function, knowing about science does not necessarily make us all "scientific beings."

        I think a big issue in "Western" medicine is that the technical language and sterile learning approach detaches the doctor from understanding that ultimately they are a "healer" involved in the "healing process" of those who are unwell. Being a healer in indigenous cultures is a huge responsibility and one that is regarded as both a privilege and a challenge. It is also considered to be an honor that, if abused, would lead said medicine person into situations where they themselves were humbled and had to rely on others. It's a nice cyclical philosophy of healing and illness, awareness and ignorance - in my opinion.

        Due to this break in modern and indigenous understanding, I am not surprised to see how many doctors there are today and how little healing is actually being done. After all, are doctors facilitators for pharmaceutical and insurance companies? Or are they varying specialists in matters of health? Further, what is an illness without the patient to experience it? A lab sample? Seems to me that doctors who "cure" by insisting on the microscope and not the patient are in the wrong field of science.

        Interesting topic indeed, Dave!
        Sanyu
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          Jul 29 2011: > Interesting topic indeed, Dave!

          Thanks, Sanyu. I really think this is an essential question because we ARE headed for a care famine (shortage of what people need), and fixing it will impact many lives, and one pathway is to LET patients help - to make them not under-utilized.
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        Jul 29 2011: "we ARE headed for a care famine (shortage of what people need), and fixing it will impact many lives, and one pathway is to LET patients help - to make them not under-utilized."

        Oh, very much agreed. I too am interested in the care field, though in a different respect.

        I am interested in Criminal Rehabilitation of the life-structuring variety. As in: world view shapes self view and self involvement with the world. Thus a criminal (whether they are behind government bars or "bars" of their own making) subscribes to a certain unhealthy and uncaring worldview that leads them into habituating this unhealthy mind-state into a lifestyle. I would like to assist the criminal in restructuring their worldview in order that they may then reinvent their lifestyle. In reinventing their lifestyle in a healthy and caring construct, ideally they will not end up back in prison. Recidivism is a huge problem in the US.

        Naturally my job at criminal rehabilitation would be easier if the doctors treating criminals for their other ailments were of a similar philosophy that awareness of/and choice determine(s) wellness.
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          Jul 29 2011: Sanyu, are you familiar with the US health reform bill's mandate to integrate behavioral health and primary care? From what I've heard, the entire idea is to get past the idea that there's a meaningful or useful dividing line between behavioral well-being and other types.

          Here's a blog post that touches on it http://blog.samhsa.gov/tag/primary-care-integration/ - it cites that the care team at the new "healthcare home"practices must include behavioral, too. Work is beginning to enable and support this truly massive restructuring of care in the US.
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      Aug 1 2011: Having lived in China where there are chemists on every corner with chinese medicine and chinese medical techniques it was wonderful to be seen as the whole person and not the symptom. In fact as a child in the UK I grew up in Devon, a rural place in the South West. The doctors not only treated us with western medical techniques but some of the doctors were trained acupuncturists or herbalists etc. If they did not have a specific kind of treatment they would partner with alternative practitioners. At no time were the words alternative used. This term only came into being when I moved to London and was shocked when a friend with bells pulsy was given steroids instead of acupuncture. The steroid route is a two year treatment, the acupuncture treatment is four weeks!!! What a difference that can make to someone's life. The Whittington NHS trust in London has been working to incorporate other forms of medicine: http://www.whittington.nhs.uk/
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        Aug 1 2011: Very interesting, Sharon! Thanks for sharing!
  • Jul 28 2011: I think (and others have written) that science and technology have slowly been replacing medical opinion. Talking to the patient can be a nebulous business. Patients might be cranky or spacey, because they're sick. They might be imprecise, or shy, or mentally impaired, or not fluent in English. They can have coinfections or comorbidities that hamper diagnosis. They might have beliefs about medical care that conflict with the practitioner. Medicine would be great if there weren't patients in it! :)

    I think it is also important to mention the risk of medical malpractice lawsuits as a factor in clinicians preferring test results to patients. Technology is a second opinion, science backing up the clinician's diagnosis. Tests are positive or negative -- yes, no. Nothing nebulous about it. (Never mind that tests can be wrong quite often.) You can't sue me for missing your ulcer, the H. pylori test was negative. Blame the test, blame the technician.

    Yes, it's culture. Yes, it's mentoring. And yes, the more we vote with our feet (I have recently "fired" a new PCP because of the impersonal way in which my first appointment was handled), and block the door (LOVED that story), and the more we insist on a partnership with our clinicians, the more we will contribute to returning the art of medicine back to its science.
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    Jul 27 2011: As a US citizen who is now uninsurable except for by MediCare--which I HAD for 10 years after "proving" a multitude of Disabling health issues stemming from Toxic Encepalopathy & Toxic Chemical Exposure-related Environmental Illnesses I find a govt employee at a computer bounced me OUT of Medicare & they are making me go thru reapplication now that I am in need of medical attention....So until I get thru all the denials of the system all I have access to is the LA Free Clinic---where recently an administrator asked me if I was "having trouble with the Dr because you're so smart?" Medical School needs to include training in respectful communication with the non-Dr. After all...Dr's NEED patients...
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      Jul 27 2011: Agreed, Zeeva - med schools need to include training on communication. A lot of people are saying that.

      It may be that it'll start to happen after some open protests. When will patients start marching in the streets?
  • Jul 27 2011: More TEDxMaastricht videos with several (e)patients to be found on http://www.tedxmaastricht.nl/videos/
    like Sophie http://www.youtube.com/watch?v=uo9FfMKtCFQ&feature=player_embedded
    or Ragna http://www.youtube.com/watch?v=7_f49qyRuy8&feature=player_embedded
    or from my dear colleague Prof Bas Bloem with his great patient Hans http://www.youtube.com/watch?v=LnDWt10Maf8&feature=player_embedded

    April 2nd, 2012 the next TEDxMaastricht : "The future of Health", second edition
  • Jul 27 2011: I wonder, Dave, if you have any thoughts about patients' involvement in the development of research. The journal Nature had an article recently about a Facebook group of patients with multiple sclerosis that pushed hard to get an unconventional therapy researched in Canada. Any thoughts on this aspect?
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      Jul 27 2011: I have some thoughts, yes, pretty extensively - the e-patient white paper (I'll link to it in my closing statement) has stories of research that's totally patient generated, even a patient community that built its own tissue bank. This is a deep and rich topic - let's keep discussing it after the hour is over - we'll have at least another week to grown the conversation.
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    Jul 27 2011: Lucien BRILLIANT comment: "HC has became a eGo system and we have to get back into an eCo system" I'm a very well-educated & involved patient--my late Dad a Heidelberg-trained MD med prof in NYC...I grew up in medical school practiced reading by reading JAMA to my Dad as he looked at slides...I'm in my 50's now--I remember when the AMA decided to give up HEALING or CURING & took on TREATING & MANAGING disease instead. YES patients (everyone!) need to be better educated about our bodies & how to take care of ourselves...& YES Dr's need to get off the "GOD" attitude & respect what a patient DOES know & go BACK to educating patients the way good Dr's always have... I am a toxic chemical exposure surviver with a history of brain injuries environmental illness & BLINDNESS that was supposed to be permanent. I was blind 5 years--but I GOT my sight back because I knew how oftern Mainstream medicine does complete 180's. More than 2 years AFTER all the MD's I was in 1998-1999-2000 told me what was then the belief: brain cells don't regenerate" they learned they DO! Good thing I didn't wait to develop a serious rehab program for my SELF. As a dancer with the upbringing I had from my father & grandfather the Dr's & my dance mentors who all followed natural, herb, & what we then called "Eastern" Medicine...I'd become a Peak Performance consultant/trainer & had to become my own best customer. Today--a lack of medical records made my Free Clinic MD refer me for psych eval, writing "probably delusional" rather than believing what I told him about my history...If not for locating retired Dr's who were on my case more than a decade ago...me NOT having good med records would really be trouble!
  • Jul 27 2011: The Patient population is smarter now... We need Doctors to be trained to deal with smarter population. However we also need to recognize that not everyone wants to be highly-utalized.
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      Jul 28 2011: > The Patient population is smarter now...
      > We need Doctors to be trained to deal with smarter population.
      > However we also need to recognize that
      > not everyone wants to be highly-utilized

      John Moehrke gets a prize! THAT is what has changed - it's now POSSIBLE for patients to bring information to the doctor's attention that would not be possible 20 years ago.

      And what's changed is the internet. It lets us connect with INFORMATION and with EACH OTHER in ways that were never before possible.

      Combine that with the information explosion that I've commented about here, which makes it impossible for anyone to know everything, and it becomes ENTIRELY reasonable that a random non-medical patient could have information that a doctor hasn't seen.

      That doesn't guarantee that everything you find online is accurate! Even medical journals retract articles frequently - check the amazing Retraction Watch blog! http://retractionwatch.wordpress.com/ But I say, if we want to harness this underutilized resource, the trick is to TEACH PEOPLE how to google more effectively.

      When I bring something to my doctor's attention, sometimes he says "Yes, good stuff," sometimes he says "Stay away from that," and about half the time he says "I don't know- let's look." And he TEACHES me how he evaluates information online.

      That's participatory medicine. That's empowering and enabling a patient. Woot.
  • Jul 27 2011: Yesterday I had a routine Upper Endoscopy as a follow-up to a look six months ago - checking for scartissuee or narrowing. After the intake- iv set-up - on the gurney - ready to roll on my side - the doctor puts a release form in front of me asking if i'm aware of the risks and i need to sign this. (no glasses- two pages of fine print) - Needless to say - this is POOR medical administration (he's a great doc in ability) - i signed but was miffed as we started that it went this way. I mentioned it to follow up caller today and that I hoped they would notice that it was poor timing. - basically disregarded - but i will talk to the doc about it. Perhaps some patients cannot handle the truth but we all must wake up from being asleep at the wheel. Often its the 'crisis' that does this for many. Perhaps the patient is underutilized because the relationship btwn doc and patient is now reduced to get em in - get em out. (apolo
  • Jul 27 2011: Dave, you have been involved in this movement from the beginning, what has been your most memorable moment in working to raise awareness of patient needs?
  • Jul 27 2011: Having systems & tools in place that enables patients to easily collect, organize & present their data for discussion with their physician is essential IMHO. It can help to use physician time efficiently if data which is important to both the physician and the patient can be easily reviewed & ongoing treatments & treatment goals then discussed. The patient may have outcome which are important to them which the physician may not realize - communication of goals is important.
    • Jul 27 2011: The problem that I've seen is that medical software companies don't always have an eye on compatibility. A hospital can buy an expensive software system with all the bells and whistles, but if it is not compatible with modern data gathering hardware like iPhones and barcode readers, they can't use it efficiently.
      • Jul 27 2011: Interestingly, VA hospitals use VistA (which is open source) for EHR and have an ongoing project which will allow any patient to access & download their medical records.
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        Jul 27 2011: Yes, Kitty, and one reason they dont' have an eye on compatibility is that lack of compatibility doesn't cost them business. Yet. Here's hoping that will change as hospitals become more experienced - and as PATIENT NEED becomes more of an issue.
    • Jul 27 2011: Tools are great, but they are of no use if you look at them, enjoy their pretty shinny look and dont know how they can effect or affect (to alleviate or inflate) your particular problem, good or bad.
  • Jul 27 2011: I believe that the patient has become the most under-used resource in healthcare because doctors have stopped listening to us. The reasons are many, but include: increased reliance on technology, reliance on the insurance companies to slot diagnoses into easy answers, brevity of appointment time, no years-long clinician-patient relationship, and the diagnostician's own reticence to say, "I don't know, but I will take responsibility to help you."

    Dr. Richard J. Baron said in An Introduction to Medical Phenomenology: I Can't Hear You When I'm Listening, "We must learn to hear our patients as well as their breath sounds; after all, what are we listening for?" The patient's own testimony is supposed to be part of evidence-based medicine, and when you put together multitudes of similar, independent testimonies, you have a powerful evidence base that should not be denied. Sadly, when patients aren't being listened to, we lose their clues to the cause and cure of their illnesses, and we lose what it is to care.
    • Jul 27 2011: I agree with that wholeheartedly Sharon as the patient is the catalyst for the meeting. If that were not true Dave saying his shoulder hurt would not have brought this meeting together, because no xray would have been done to find a tumor.
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      Jul 28 2011: Sharon, the relevant question, then, is WHEN did professionals stop listening to us, compared to when they did?

      Did you ever have a doc who listened well? I certainly have, and in fact I've ditched two with whom I didn't get along well.

      The phenomenon I'm talking about, though, goes waaaay back. I've talked to numerous physicians in my travels who say their mentors TAUGHT them not to waste time sharing information with patients.

      This is culture, and it's indeed changing. In my experience there are numerous doctors who agree with this, and most residents fresh out of school have not yet been "mentored" into shutting us down.

      For our part, we can ASK our doctors to listen. See the other commenter who realized the trick was to stand in front of the door so the doc couldn't leave. :)
  • Jul 27 2011: I think levels of efficacy also affect how engaged patients are. If patients have high levels of efficacy (have the tools and feel they are empowered) then they are more likely to be engaged in their health and take charge of their health. Those who lack resources (such as insurance or medical data) may find it more difficult to get engaged in their health.
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    Jul 27 2011: Shorter answer: Ego.
  • Aug 12 2011: http://well.blogs.nytimes.com/2011/08/11/letting-doctors-make-the-tough-decisions/?smid=tw-taraparkerpope&seid=auto
    I feel like a pest, Dave, with all my comments. Please accept my apologies. After reading this, all I can say is that this "study" needs a do-over. HCP's joining the circle of care is a very important step. Patient centered care and patient autonomy is a subject near and dear to me. Keep up your good work! (Making decisions for oneself does not equate "evicting" a professionally educated HCP, it merely means a person has a sense of control in a situation that may actually be out of control.)
  • Aug 11 2011: I'm guessing that a litigious society is part of the reason in America. The more the doctor reveals and engages the greater perceived risk of saying or doing something that could open them up to a law suit. Same reason we have all those unnecessary medical tests to minimize the litigation risk rather than for any benefit to the patient. Yet having the patient involved as a partner would probably decrease the chance of a court case through more success in treatment and the patient having better understanding throughout the process. They will feel less like a victim if something does go wrong.

    In the public health systems of New Zealand, Australia, and the UK I think it is just a case of insufficient resources. They seem to be systems where resources are carefully rationed and behaviors are rewarded within the system that promote the idea of dealing with as many patients as quickly and cheaply as possible. There isn't time for a lot of dialog and a lot of reviewing of medical history or engagement.

    In general medicine is not about curing a patient it is about treating a patient. I've been told several times that they might never understand what my underlying problem is but through drugs they can control the symptoms and improve my lot in life. For 10 years in 4 countries I've pursued an answer against the systems. I'm still doing self diagnosis and experimentation to figure it out. My wife was given a diagnosis of pre diabetic or perhaps even type 2 borderline and the doctor wanted to perscribe metformin for her. She went on an aggressive diet and exercise program and rigorous self study of sugars and how certain foods affected them for her. End result blood work totally normal. Why the doctor didn't tell her to do diet and exercise - "no one is ever willing to change their lives that much". The patient is the most underutilized resource in healthcare and also food is medicine. Shame no food reps are knocking down doctors doors promoting leafy green vegetables
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    Aug 11 2011: The patients are the most under-used resources in my opinion because they are the subjects on which the medical treatment is done , I think it's part of the medical ethic to use the patient the less , the main goal of a doctor I think is to treat a patient, to make him feel better/ to heal him not to inform him .
    On the other hand it's true that the patients have to know about their health problems and how they can be treated but this doesn't mean that the patient have to be used more than like a subject of treatment . Let's let the doctores to do their job. We may learn about our health problems but still the doctor is the doctor and he's the only one who can treat us (we can't do it surely) .
  • Aug 10 2011: Local culture /age play an enormous role in this subject, too. My mom was a RN educated in the 60's in the Western medical model in the midwest USA. She developed cancer, she was an extremely compliant patient. She followed every order from her team of MDs. She immediately changed her diet to nearly completely Indian vegetarian, + supplements even though she was born & raised in the midwest eating meats, vegetables, fruits usually in desserts only. She never questioned any "advice" she was given by any doctor. Professionally, she was strong and a critical thinker. When she got sick, she changed. She became passive and meek. She never once considered going to the "city" or the university hospital even though it was< an hour away. She died less than 2 years later in early 60's, after a grueling, painful attempt to survive. (She is the only family member to develop cancer). She was physically fit & active)
    .My dad is in hospital now (midwest) with many problems. CA, sepsis, pneum., etc. His wife is overwhelmed. She records all conversations with drs @ my rqst. I visited him in ICU and tho' I have his permission to get info about him, his pulmonologist told me, verbatim, I don't have time to talk to you. Talk to your stepmom. I was speechless.He abruptly left the room. I'm a nurse in addition to my other job. It is unethical in my part of the country to tell a client's family that you're "too busy to talk to" family. I would have gladly made an appointment. I was never given that opportunites.I looked around,I realized there were many differences between where I have experience and where my dad is cared for. Don't like comes to mind.Simple things: no hand sanitizer in halls (ICU!),no visitors for 2 hours at shift change, etc.I can't imagine what info has been gathered during his care that will never be shared with them and they don't have the savvy to ask for. A letter is on the way to the administrator! "Hostage patient" even if HE doesnt' feel that way! Not empowered
  • Aug 10 2011: An important topic, especially in light of changes in the delivery of health care in the US. Couple points: 1) I suspect some docs must distance themselves from engaging too deeply w/patients to avoid burnout. It's standard to do debriefing in crisis care and mental health care delivery and should be for docs. It's emotionally exhausting. Not that this excuses not listening to patients or collaborating with them - it DOESN'T - but it's a possible defense mechanism. 2) The web has not leveled the playing field btw doc and patient in that most patients do not have the training their docs do. However it does change the power dynamic and makes them more of a collaborator and more able to become the most motivated researcher you're going to find - docs could consider this free labor. 3) Adoption of EHR will be a rough road but I think in a culture where more people are comfortable putting personal info online, it will become more and more accepted and, eventually, a powerful tool for sharing among docs, specialists, patients, researchers, and advocates. 4) less literate patients or people without web access would be served by people willing to be patient advocates (a growing field, BTW) who will assist them in doing some researching and finding resources online. the new social work/case coordination role.
    So many implications and food for thought - thanks for the talk. I actually solved my own husband's health mystery when ER docs and PCPs could not - after 4 years of multiple trips to the hospital - through persistent internet research. Now we know what was making him violently ill and how to stop it. Powerful stuff.
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      Aug 11 2011: Sarah, in short you're pretty much spot-on with everything you said.

      I'd love to know more about how you helped solve your husband's tricky diagnosis. Jerome Groopman MD's book "How Doctors Think" (an e-patient essential IMO) cites that autopsy shows 10-15% of diagnoses were wrong (!), and he focuses at length on the complexities and pitfalls of the diagnostic process.

      Every true story helps make the point, whether it's in a speech or a policy meeting. So if you want to share more details, please email me via my profile.
      • Aug 11 2011: I'll keep the details private as my husband would not like them shared, but I took the following approach: I searched PubMed and used his symptoms as keywords for a Google Alert. I did a lot of searching online and took a few wrong turns before I figured it out, so people, be persistent! His condition is not one that has been identified in the literature for long (maybe 5 years) and I actually identified it first through an informal chat forum, which led to a journal article. The symptoms sounded so familiar, I emailed one of the authors of the paper. They responded (!) that it sounded like he had the condition and recommended he follow up locally with his doc. Bingo. He is working on getting healthy and his condition has improved.

        Along the way we had a lot of frustrating times as docs who can't provide a dx seem not to want to be bothered (or look bad?) and simply treat the symptoms and send him home.

        I'm not against docs or hospitals, I think they are in a tough position - IMO they should be paid for prevention and keeping pts healthy, not by the # of prodecures they can rack up (and make pts endure).

        It helps that I do public health communications-type work for a living but I am not a medical expert. Having some knowledge of the resources out there and good search skills does help.

        Thanks for the recommendation on the Groopman book - I'll look for it!
  • Aug 10 2011: My husband and I had/have the benefit of working for a legacy airline. When it became clear that his melanoma was changing pace, I began scouring the web for trials, world-wide. I called our- and I mean OUR doctor (cancer is a FAMILY disease) to request some additional testing, in a hurry. At first, I felt like I was met with some resistance. Then, after my DH failed to meet the criteria for that trial, on the other coast, I found another trial. He didn't quite make the criteria for that one either. The third one, had just closed- the 20 clients (or whatever small number of participants permitted) had been selected. It was with a very sick feeling in the pit of my stomach that I called our dr again to agree to a meeting about IL2. When we got to the clinic for that meeting, the dr was on the phone with a colleague in another city, on our coast, and had made an appt for the next day to actually ENTER the study. Our dr specializes in breast CA, melanoma is second. Thanks to Dr. Smith of Portland OR and his willingness to listen to our dedication n committment to try anything, anywhere, I was blessed with 4 more months of love from my husband. I will NEVER be able to express my gratitude to him for listening (a lot more than I had given him credit for). Somewhere along the way, we made an impression on him that made him take notice of our passion. Perhaps it was our 4 yo son sitting on my DHs lap during treatments 8 yrs earlier, perhaps it was my persistence...never will know. And naysayers, 4 months is a VERY long time! Having the info we needed, when we needed it made all of this possible. Insisting on copies of everything, everytime helped.A lot.And more than Dr. Smith made it possible, he's just our favorite. And having an advocate-either self or someone else- is absolutely critical. As a widow now, I fear for my health if it fails suddenly. My 13yo son will be of little help. Better get my hc info in writing very soon-and tell him where it is stored! Thanks Dave
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      Aug 10 2011: PJ, your story brings tears to my eyes. I *so* completely get what you faced, and the truly priceless benefit that accrued from your activism and the fact that your doctor let patients help.

      Best,
      Dave
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    Aug 10 2011: All, I apologize for being absent for a week - a lot's been going on. Hi from Los Angeles - I'm speaking tomorrow at another of the regional trainings the US government is conducting for health I.T. contractors and agencies.

    I'll start catching up with your notes. Thanks for caring!

    btw, today is six weeks since this "Let Patients Help" TED Talk was posted, and it's already risen to #530 in the Most Viewed All-Time http://www.ted.com/talks/list?orderedby=MOSTVIEWED&page=53, out of the 1,005 TED Talks. Your enthusiasm is a big part of the reason. We also have subtitles in 11 languages. (The talk's web page says 10 languages right now, because Spanish has been removed while TED Translator Francisco Gnecco improves it.)

    Thank you, everyone around the world!
  • Aug 7 2011: I SO agree with this! It is so frustrating when trying to work with some healthcare providers who just don't want to hear from you. Last summer I was helping my dad who was having serious stomach problems. When I went with him to his primary care doc - he (the doc) was annoyed at my questions, etc. When I brought up questions about potential diagnoses, he was quick to dismiss. When everything came down, I was right in my assessment of my dad's symptoms. It made me so mad!! If someone would have listened or even tried to talk with me and my dad, my dad could have had appropriate treatments 1+ months earlier. Even if I would have been wrong, the worst that would have happened is that a blood test would have been done in vain!

    I am in the healthcare field - actually, I teach future health providers. This is something I will be pushing more and more! We have to listen to each other - e-patients, providers, ALL!!
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      Aug 10 2011: Hi Carrie - yes, this is the work I'm doing in public speaking. My website epatientdave.com has a page of videos of past speeches, which may be useful - this is NOT an anti-doctor movement - this message has been invited by doctors at the National Quality Colloquium (August 2010), Institute for Clinical Systems Improvement (May 2010 and 2011), Institute for Healthcare Improvement (Dec. 2010) and many more.

      The message is NOT "doctors are wrong" - doctors saved my life. MULTIPLE doctors. The message is "Let Patients Help."

      You might be interested in articles at the (free) Journal of Participatory Medicine www.JoPM.org, published by the Society for Participatory Medicine www.ParticipatoryMedicine.org, and its blog, http://e-patients.net.
  • Aug 2 2011: Hi Dave, Thanks for such a great talk! I believe most people don't have a basic knowledge of how the body functions, from the cellular level to the level of the complete organism. They put alot of trust in those who have chosen to study healthcare, instead of empowering and educating themselves on the most important thing they own...their body! Let's face it, the body, and it's inner workings are extremely complicated, and even those who have studied it for years do not fully understand it. Thanks to the ever advancing tech world, diagnostics and treatments are being developed that we never could have dreamed of. Some things, one in particular that comes to mind is the treatment for narcolepsy, which my sister suffers from, are not yet there. In my sister's case, the treatment isn't quite there, and so she suffers because the medications are not quite the solution to her problem, but they are the ones available at this moment. So, she must take them, almost powerlessly, until a more specific treatment is developed. Luckily she is online with a support group searching for things other patients have tried. She has found it difficult to communicate with her doctor, and basically picks up her script. I keep urging her to find a Doc she is comfortable conversing with. I know they are out there, because my general MD is FABULOUS. I can ask her any question I want, and talk over ideas about my own health. She is very receptive, and together we come up with solutions.
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    Jul 31 2011: Your TED talk was an inspiration. Fourteen years ago I overturned an 8 week terminal cancer diagnosis by mobilizing a self-created multi-disciplinary treatment team incorporating traditional medicine, diverse spiritual communities and several alternative health treatment modalities to form my "survival roundtable". Like you, I demanded all data and medical records as I went through the journey which at that time seemed radical.

    I would not be here if those 105 people had not been inspired by my "roundtable" proposal to engage in the saving of one patient's life, mine.

    I encourage all patient's to be proactive.
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    Jul 29 2011: Well, here's an update for you: remember "@RAWarrior," the R.A. patient at the end of the video? She went today for another test, in which the results are used to calculate a score. Being an empowered, engaged patient, she asked for a copy of the results - and SHE (not they) noticed that they'd MANUALLY TRANSCRIBED incorrectly. So her weight and her height were reversed!

    And those figures are used in calculating the score she was being tested for.

    I get two reactions to that:

    1. Why on earth in this age are we paying people to transcribe, which requires proofreading, which is never done, so things come out wrong? Why?

    2. Until we fix that, for heaven's sake, LET PATIENTS HELP. Let us be a second set of eyes, the proofreaders on our family's data, etc etc.

    Your thoughts?

    (There will be bloggage about this as the story develops, but the points above don't have to wait.)
  • Jul 28 2011: The Institute for Patient- and Family-Centered Care has many free tools to help both patients and their physicians learn how to let patients' help. We invite you-no-we encourage you to download anything you need and use them to improve respectful exchange between patients and health care providers. (http://www.ipfcc.org/tools/downloads.html)
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      Jul 28 2011: Woohoo! So great to see IPFCC here, Joanna!

      I was invited to work with y'all at the big conference last year but couldn't afford the time. Thanks for all you folks are doing.
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    Jul 28 2011: Jeeze :-)..... @WellApps did a feisty remix of the "e-Patient Rap" in the video. It was only a few seconds there; now it's 46 seconds. :) http://wellapps.com/e-patient-dave-gimme-my-damn-data (He wants to know if I'll be touring with Jay-Z... I think not...)
  • Jul 28 2011: Hi Ragna, in my opinion Patient Empowerment comes with a kind of responsability. Social Media can be very cruel in killing reputations. Accusing your doctor or even worse threaten her/him is not the direction that strikes my mind when it comes to improve healthcare. As sad as it is, some people even need to be taught that one should not beat up healthcare professionals.
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      Jul 28 2011: Hi Remco - agreed, it doesn't accomplish much to trash someone's reputation in social media. Throughout my case (while I was apparently dying) and then as I got into healthcare, the question that I kept asking has been: "What could be said that would make any difference?"

      I expect we'll go through a process of maturing. Many years ago as people got online for the first time, a lot of people were fooled, thinking "If it's on the internet, it must be true." And people fell for the most idiotic email scams. Today most people have outgrown that as they learned to be safer.

      In the same way, I anticipate that people will learn to be careful about reading online reputation comments. Reputation IS important - it's extremely important in marketplaces like eBay and Amazon - but until you get a large number of comments about a merchant, it doesn't mean much. And as you probably know, eBay and Amazon work hard to get buyers to comment on the sellers. A rating site like Yelp has no way to do that.

      Here's an idea: perhaps "feedback" starts with CHOOSING your provider responsibly. If you meet with him/her and decide to "get married," I would hope it's partly because you communicate well. Then, if something goes wrong, you can talk about it, as in any good relationship.

      But if someone feels passive and disempowered when they CHOOSE a doctor, I bet it increases the chances they'll respond ineffectively and poorly when things go wrong.

      Thoughts?
  • Jul 28 2011: Dave, I want to thank you for participating so much in the TED 'community'

    I wanted to suggest that alot of this conversation is based on EMPOWERED PATIENTS BEING HEARD

    What about empowering those not motivated to participate in their care, even the care prescribed by the physician (maybe because it is so impersonal).

    I would like your input on this idea I had http://www.ted.com/conversations/4461/is_it_possible_to_screen_patie.html?c=293489If
    just drawing your attention to it since it is a quiet 'conversation' and yet I think you may have an opinion
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    Jul 28 2011: I believe in the e-patient revolution in principle, but have some reservations about the way a patient might unintentionally interfere with treatment for a variety of reasons.

    My father has just come away from a major hospitalization episode and his insistance that he be in control of every detail of his treatment created near chaos.
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      Jul 28 2011: Hi Jim - I'd love to learn more. In the Society I've mentioned, we're not just advocating for more engagement, we also want to develop best practices - how to do it successfully. What can you share with us that might shed light on the challenges?
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        Jul 30 2011: Sorry for the delay in responding... Yes, I would love to share some thoughts with you on the experience. I'll collect my thoughts and do that - but if I don't get back to this conversation before it closes what would be the best way to communicate with you/your organization?
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          Jul 31 2011: Click my profile and TED.com will give you a way to email me - include your address and we'll be off to the races!
  • Jul 28 2011: Kitty - that is so sad. When you KNOW something is wrong and your doctor says it isn't - it's time for a new doctor - and perhaps many new opinions. I'm sure there is arrogance in Modern Allopathy - especially, since it is not based on "Wholeness" - or taking the whole patient in, but more based on symptoms and in the case of your friend, negligence and likely stupidity on the Doctor's part. May she find her healing and healthy management of those issues.
    My point was more that I don't feel that arrogance is the main problem. I think its more like ignorance (which is ignoring the truth) I think most doctors truly want to help people. Thank you for sharing with me. It can get scarey in the Allopathic Medicine world. I really appreciate these converstation today. Miracles can also happen there.
  • Jul 27 2011: Hi Dave,
    Great story. I couldn't agree with you more, but as one who currently controls a lot of data for people such as you and me, there are three major barriers that we must overcome:
    1. Ownership (many institutions and practitioners will tell you it is "their" data for variety of reasons)
    2. Cost - Who is going to pay these interfaces/delivery mechanisms?
    3. Security - There is already to much exposure of personal data of all sorts - how would we protect people from themselves?

    I spend a lot of time worrying and thinking about these issues. I'd love to hear your take on it.
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    Jul 27 2011: That's healthcare social media! See also my colleague Susannah Fox's report "Peer to Peer Healthcare" http://www.pewinternet.org/Reports/2011/P2PHealthcare.aspx from the Pew Internet and American Life project.
  • Jul 27 2011: Dave, you would be proud of a group of persons with ALS (Lou Gehrig's disease) and caregivers of pALS who are mobilizing the ALS community to fill a clinical trial for a very promising drug for the treatment of ALS. Several of us on the trail have experienced such a remarkable response to the drug that we are using every means possible to quickly move this trial to completion. We have used PatientsLikeMe and Facebook to broadcast our experience with the drug and to educate other pALS on how to find a clinical trial site and how to enroll. We will probably fill the second half of the slots in a fraction of the time it took to fill the first half of the slots.

    Ben
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    Jul 27 2011: I haven't had time to read all comments but I wonder if one of the reasons patients are under-utilized as a resource is because they are ILL? People who are in pain, fatigued, depressed, etc. are in no position to be empowered and informed. They may struggle to find the energy, concentration, and stamina needed to educate and diagnose themselves, not to mention stand up to a doctor and convince them to take note and pay attention. The worst kinds of rare, lingering, chronic and wasting diseases are difficult to diagnose and really take a lot out of the patient. It should be the doctor's job to investigate what is wrong, with caring, compassion and competence.
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      Jul 27 2011: Hi Kris - great point (patients being ill), but it's not the point of THIS question. Even patients who are in great shape are generally underutilized, AND sick people who WANT to be involved are often downplayed.

      Plus, I point out in the TED Talk that patient is a collective noun: I don't just mean the sick person, I mean all their family and caregivers who are on the receiving end of care.

      I've even heard from some DOCTORS who have a disease that THEY have been dissed by THEIR doctors.

      There seems to be an assumption, running through many parts of our culture, that NO VALUE can possibly come from anyone other than a specialist on a topic. And that's wrong.

      If you haven't done so yet, watch the video (the TED talk in this conversation's profile). My true story, and parts of two others - an empowered patient and the wife of a patient who didn't make it.
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      Jul 27 2011: True if you are ill you might not have the energy or stamina to find out things for yourself. But as Dave says you might have a loved one or family. And if you don't maybe we should make empowerment coaches available for patients.
      They might be a good idea especially when dealing with multiple doctors and/or disciplines.
    • Jul 28 2011: excellent - astute and true! thanks
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    Jul 27 2011: GREAT to see you engendered so much conversation Dave - GREAT, but not in the least surprising!
  • Jul 27 2011: My oncologist is strictly AMA schooled and indoctrinated. All theraphy was only American Cancer Society approved and of course big pharma cashed in. One drug that was administered every two weeks was billed out at $12,600. The medical profession needs to view Dr. Oz to learn terms like "objectivity" and "holistic" The biology of belief was the key to my recovery.
    Thanks TED & Dave
  • Jul 27 2011: I agree. Some individuals will eventually stumble across an event or other motivation that causes them to actively engage in their care, research, and decisions. Only when we (society) develop a 'retail' like demand for active participation in our own care will there be wide spread engagement. Until then, it is human nature and much easier to use sterotypes and the complain about a HC system that he/she may not care to fully understand and use it to its full potential.
  • Jul 27 2011: I have been viewing TED for over a year, however this new twist with an E-patient application is truly amazing. As a cancer patient not receiving any credible answers, I feel I have indeed found my resource.
    Thanks Dave !!!!
  • Jul 27 2011: "e-Patients" interesting concept...
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    Jul 27 2011: Because the whole healthcare system is reluctant to empower patient. Neither doctor nor insurer nor healthcare provider cares about patients's opinion though they are taking descision that will impact the patient most right or wrong way!!!!

    Patients are guniepig of healthcare system.........
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    Jul 27 2011: Can't ignore the fact that most MD's resent the patients who DO SPEAK UP STAND UP ACT UP & ASK! It is an EDUCATE EVERYONE--PATIENTS to be more empowered--& DR's to respect their patient's intelligence & ability to understand!
    • Comment deleted

      • Jul 27 2011: i / we talk to a lot of patients every day in our own facility. Although we hear a lot from docs and nurses that they can not image that that is the case, many patient, family and informal care tell us often they FEEL HC pro's resent. Wheter or not true we HAVE to do something about that.
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    Jul 27 2011: I just want to thank you, Dave, for a great conversation. I'm glad to be part of this. There's enough material just in this short talk to keep my mind spinning for the rest of the week.

    Wishing you all a great day,
    Jody
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    Jul 27 2011: Wow, they just told me they'll leave this WHOLE PAGE open for comments for a WEEK! Go mad, people! :)

    And THANKS to the awesome TEDsters who conceived this and made it real! BRING FRIENDS! CHANGE HEALTHCARE! START HERE!
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      Jul 27 2011: thank you SO much for starting this festival e-Patient Dave deBronkart... & for your great talk! I am a "miracle" healing that had little to do with mainstream medicine...I wrote Zeeva the Art of Wellness & share news, tools, & experts--shared your TED talk!--on my Zeeva the Art of Wellness Facebook Page. People really WANT to be Well...I believe it's SO IMPORTANT that we have these discussions--how GREAT TED knows it too & this page will be open for comments a whole week! Thank you & Blessings! Be WELL LOVE Zeeva®
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    Jul 27 2011: I guess I don't know how a doctor's office operated 40 years, but today I see so many people being shuffled through the doors and hear doctors speak themselves about the stress they feel of having to personally attend to and "connect with" 30 patients a day. How in the world is a doctor supposed to utilize his patients and involve them in their own care when he has
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    Jul 27 2011: I will of course be coming back to keep the discussion going here, as long as it's open.
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    Jul 27 2011: So, folks, it's top of the hour and time for me to go. We're going to stop taking live comments now, but you'll be able to keep commenting as if this were a regular blog or forum. Thanks so much - my closing statement will come up shortly!
  • Jul 27 2011: For some of us, passive acceptance did not and does not exist. Getting the information of coverage, condition, procedure and medication alternatives has always been difficult. Thank you for creating the access for the critical mass of people wanting information.
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    Jul 27 2011: I'm looking forward to reading the links you posted. Thanks so much!
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      Jul 27 2011: My final statement may be posted a few minutes after the top of the hour. In any case I'll be coming back to continue the conversation for at least a week.
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    Jul 27 2011: And Lowell Hennigs..."what happens to those without either voice or advocate, the widowed, the elderly, those with family in other countries?" PLEASE ASK THAT SAME QUESTION with IN OUR COUNTRY???
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    Jul 27 2011: We're winding down to our last few minutes, folks. THIS CONVERSATION WILL STAY OPEN for additional comments - keep it up!
  • Jul 27 2011: please list the site for the e-patient mentorships, blog, etc.
  • Jul 27 2011: Last week me and my wife decided to submit our son to a surgery - and we choose a brilliant MD and a state of art hospital in Brazil. When I told her that I was informing myself about the procedure on WebMD site, she thought that I was not comfortable about de doc, the hospital etc. Seems that pacients - in some cases - think that if pay for the best, they dont need the rest (internet).
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    Jul 27 2011: This question comes via Facebook, from PJ Bird: ‎
    Please suggest to Dave, if possible, that he make his "form" available for all of us who would like to use it! [Lost my dh 11 mos ago, carried a 30lb bag of medical records to every single dr. appt (even to his primary docs) so that all the i's got dotted and all the t's got crossed. Every patient should have a (simple) form like his design to prevent errors, miss critical information and to be the "owner" of his/her information.]
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      Jul 27 2011: Hi PJ! Believe it or not I don't have a "form" or i would indeed share it. The reality today is that we need to engage with WHATEVER our docs and hospitals are using - paper, electronic, whatever. You're legally entitled in the US to a copy of it all, and new regulations mean it will become easier in the next few years. Until then, in a crisis episode, ASK TO SEE YOUR RECORD, frequently, and persist until you get it.
      • Aug 10 2011: Thank you! Can you cite the regulations that state I'm legally entitled to a copy of my records? I'd like to pursue this for a reason other than being an empowered patient. Not to sue, by the way!
        And, perhaps, you've inspired me to "design" a form that would have been helpful and easier on my elbow/shoulder! And could be emailed, like you say you do before an appointment with your HCP.
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          Aug 11 2011: PJ, you're entitled to a copy of your record under regulations written for the HIPAA law, passed in 1996. (Health Insurance Portability and Accountability Act)

          Here's a flyer about it, with a Seinfeld episode that ties into this... Seinfeld doesn't mention HIPAA partly because HIPAA was passed shortly before this episode aired. http://epatientdave.com/2010/04/23/elaine-and-kramer-play-gimme-my-damn-data/

          Many hospitals hide this from you or stonewall it ("It's not our policy") but that is ILLEGAL and can get them busted. Just say "HIPAA" (pronounced hippa) and they ought to cringe...

          Mind you, they're allowed to take a month to deliver it, and they can charge whatever state law allows. But, increasingly, if one asks nicely or pleads hardship, the record can be received reasonably quickly for free or at little cost.

          Let us know how it goes...
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    Jul 27 2011: yes i do indeed!
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    Jul 27 2011: I think the reason why is because no one talks about patients AS a resource in their own healthcare. How many patients have ever managed their own healthcare? We just take the doctor's orders and go on about our business. One could also argue that the patient didn't go through a decade of schooling to heal themselves so what resource are they truly.

    I also think healthcare has also gotten caught up in selling pharmaceuticals, rather than using the natural powers of people/patients as a resource (I assume this is what your question is getting at). I'm not sure how that might of happened. Then again this is all my (humble) opinion.
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    Jul 27 2011: I also feel like people don't trust their doctors nowadays because of all of the medical mistakes you hear. Then you have to look at it this way we have better technology today than we did 100yrs ago. With all the new ways to find thing out people don’t have to go to the doctors to find out a prognosis; you can look on the internet and find out yourself. So doctors might also feel like “Well, you came to me to find out something you could have found out yourself on the internet” With that thought they feel like I have no reason to listen to you because you came to me for the help and I didn’t come to you.
    • Jul 27 2011: They trust the doctors they have been able to create a human relationship with. But the 'system' tends to keep everyone at a distance. Treating us like widgits. Parts moving down the assembly line.
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        Jul 27 2011: Well yes, I do believe there are people who still have trust and faith in their doctors, but there are far too many people who don’t.
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        Jul 27 2011: I think this is a major cause of the current health care system problems. The industry was developed with reductionist thinking (industrial revolution type organization structures).
  • Jul 27 2011: My question would be HOW can we raise the numbers in empowered patients, the SM using, well informed patients seem to be a very small tribe
    • Jul 27 2011: by giving them a forum, stage, platform in EVERY conference about healthcare. Every one of them should have at least one patient in it. Like i said THEY are the real experts in HAVING the disease.
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        Jul 27 2011: YES, Lucien! Your TEDx Maastricht was distinctive in that the first speaker you announced was a PATIENT, and the entire day was about patients. Compare that to the "Medicine 2.0" conference at Stanford next month: only ONE PATIENT speaking. Hm! What will they talk about? Probably not what patients would want them to!
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        Jul 27 2011: In the past 2 years I started getting invited to policy meetings in DC, and the first thing I noticed was that although they would pay my expenses, I had to take time off work unpaid to do it. All of Washington is that way. So guess what we get? Policies that were developed without patients in the room!

        The result is predictable: policies that LOOK like they were developed by people in the business, not people whose lives are at stake.
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          Jul 27 2011: The reimbursement business does not work when it's your life or the life of the person you love. I found how easy the transformation to assertive patient really was much easier than I ever would have anticipated. It simply seemed like the logical thing to do.
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        Jul 27 2011: this is a good idea and would help educate those working in HC on what patients are asking for.
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      Jul 27 2011: I agree. Informed patients need to keep coming to the table AND this picture needs to be told via traditional and new media.
      • Jul 27 2011: every conference abt HC i attend or speak at i start with this question : http://www.slideshare.net/lucienengelen/lucien-engelen-keynote-doctors-20/7 that could be a start. Next we have to see patients AS IMPORTANT as other speakers that we ARE paying for their expertise. Challenge though will be to distinguish authentic epatients or i-patients (who just looked something up in the internet)
      • Jul 27 2011: Hi Jody I have a feeling that the mainstream patient does not find her/his way in the new media, so a breakthrough can only be found via the traditional media. Maybe we could give Oprah a call?
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          Jul 27 2011: LOL - unfortunately Oprah took an excellent opportunity - the Discovery Health Network - and turned it into a stage for all it friends. It could have been a superb forum for launching a series on ....let's say...The Empowered Patient....

          Seriously tho, I disagree about patients not finding their way in new media. I actually think they are the ones building the roads.
      • Jul 27 2011: I totally agree that they are the ones that have to lead a new era in Healthcare, but I hesitate to believe that the current SM will do the trick. In my country pop. 16.5M Only 30k are using Twitter on a weekly basis, that's less than 0.2% No way this group is in any way representative for the entire population.
        Nevertheless amoung the 30k are beautifull and very inspiring examples of Patient Empowerment, what puzzles me is HOW can we raise the Participation Levels and by doing so the Impact of Empowered Patients
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          Jul 27 2011: Remco, Twitter or Facebook is certainly not enough to reach everyone. (Remind me, what's the Dutch equivalent of FB?) Social media is just the most common method right now, because it is so "liquid" - people on those platforms spread ideas as quickly as spilled water runs across a table.

          I'd like to see a popular movie about this. Many years ago in the women's movement, an important movie was "9 to 5," which told ordinary people an entertaining story about a boss who was a rude sexist pig, while three empowered women decided they weren't going to take it anymore. Can we create an entertaining movie like that about patients becoming awake?

          Amazingly, those three women were Dolly Parton, Lily Tomlin and Jane Fonda - three VERY different female icons. It was a great way to reach a very big audience.
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          Jul 29 2011: Hey dave, I think you mean Hyves. (the dutch social network site).

          The liquidity of SoMe and the fact that demographics no longer dictate who your friends are DO create real-life interaction. Especially in a small country like the Netherlands.

          Creating a film is an idea, although I don't believe I would go out to see it. ( the subject not being attractive enough) But I do believe that it must be possible to get media attention and collaboration ... after all.. if you aren't a patient now, chances are you will be in the near future.. :)

          I believe the way to raise the participation levels is through education. Wether it be on (med)schools, or introduced as a standard question on your social workers'/childconsultationcenter/GP's form.
          Maybe by hosting evenings in the local community center?
          Oeh, I can think of many ways!
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      Jul 27 2011: We all become patients or loved ones from patients sooner or later, right?
      We don't teach children not to go with strangers áfter they met one. So why would we teach patients how to be patients after they have become one.
      Should there be a part in general education that teaches you this? Aside from learning to read, education should teach you about selfesteem, about healthy living, about handling money, and also being an empowerment involved individual when it comes to your health.
      • Jul 27 2011: @ragna great idea to integrate patient empowerment in general education, I guess it could contribute to responsible citizenship to empower yourself in a good way.

        @ePatient Dave who should we cast for our Movie apart from you and Oprah, but seriously I think a movie could lead to a quantum leap in patient empowerment. Let's elaborate on this one.
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          Jul 28 2011: I guess in the information age part of is it that you teach people how to distinguish 'good' and 'bad' information.

          Although I hate the sound of it, (it sounds a bit BigBrother, or back-to-the-fifties) I strongly feel for your 'responsible citizenship-class' you could embed all sorts of things in there!
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    Jul 27 2011: I make often the experience that everyone say yes but first the other.
  • Jul 27 2011: I cant understand why patients are so under utilized. I watched my mother suffer and continue to get medically induced ailments like diabetes until finally when she yelled and screamed in the middle of the floor that all "her" finding said she had sarcoidosis (yep that's what she has) then people stopped treating her as if she were a non factor. The biggest problem with this disease is that it plays peek a boo and shows up as something else.The EGO comes in the power of that white coat I think. Then it blurs the sight to realize that you are nothing without patients.
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    Jul 27 2011: What is the cultural influence on the subject. Are there differences between the U.S., Europe, Asia and Africa?
  • Jul 27 2011: I am a psychologist and recently conducted some research using a framework of therapy called pluralism that encourages the use of 'client preferences'. This means that clients have a say in how they would like to work towards their own idea of mental health in collaboration with the therapist. I was inspired by what you had to say about patients being an under-used resource. Do you think this could be extended to mental health as well?
  • Jul 27 2011: Im not sold that it is arrogance. I feel that the patient in many ways has a responsibility to advocate and learn and understand their own health and the expect/require a relationship with the doctor. There is also the issue of too much business for the doctor - and no time to actually create a relationship with the patient. Doctors need to learn more about NUTRITION and the BENEFITS OF PREVENTATIVE Healthy Lifestyles - themselves.
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      Jul 27 2011: Hi Jenna - in my experience SOMETIMES it's arrogance, but not at all the majority of the time. Yes, patients need to get off THEIR butts, too.
    • Jul 27 2011: I concur. Prevention is on the part of the patient Jenna. If you smoke you know you eventually wont be able to breathe. Why get mad at the doctor for telling you he cant heal you when you refused cessation vehicles to alleviate the problem before emphysema sunk in?
    • Jul 27 2011: Yes, sometimes it is arrogance and even negligence on the part of the doctor. My friend experienced extreme weight gain as the side effect of a prescription drug. Instead of listening to her, the doctor blamed the patient for overeating, and repeatedly told her to quit eating so much. One day, she fainted in his office. It turned out she was eating less than 800 calories per day.

      The same doctor refused to prescribe any pain meds for her fibromyalgia, because he did not "believe in" fibro as a diagnosis.
  • Jul 27 2011: To sterotype the HC industry, physcians and patients for that matter is not helpful. Physicians and patients are individuals with unique and varied skills, knowledge, demeanor, interpersonal skills, etc. Recognition, acknowledgement, and adjusting to that diversity will empower the individual. A key factor to successful healthcare episodic outcomes and health maintenance is for the individual to take responsibility and actively engage all participants in the HC community. Not everyone is willing to do that no matter how ill or well they may be currently.
    • Jul 27 2011: But that is the issue propagating those stereotypes and few if any being willing to break from them.
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      Jul 28 2011: Hi Paul - I couldn't agree more that stereotyping is not accurate. I hope you've had time to watch my talk - the conversation here is off on a distinctly different angle.

      In other comments here I've strived to make clear that this is not about a black-and-white picture of "good and bad." I carefully chose the words of my closing message - it's "Let Patients Help," not "Who needs doctors??" :-)

      On that note - last week was the 4th anniversary of the end of my treatment. I wrote this post to publicly thank the extraordinary, excellent, hard working professionals (from the lab to the bedside) who saved me. http://epatientdave.com/2011/07/23/thanks-to-you-who-saved-me./
  • Jul 27 2011: I recently have health insurance and I am running health checks and updates. I have found a patronizing pattern in HC that is not exclusively from doctors. Consult results that were different than the conversation based on a medical unilateral decision. I changed practitioners. Vote with your feet and let them know why!
  • Jul 27 2011: Dave, you are an inspiration! I have ALS (Lou Gehrig's Disease) and find much of the same experience in regards to ALS clinical trials. The patient community knows far more of the opportunites than even specialist Neurologists.
    • Jul 27 2011: I agree Rob because as it was stated earlier, the patients are the "guinea pigs" who try all of the combinations of things prescribed (and not) in their quest to get well, or at least relief.
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      Jul 28 2011: > The patient community knows far more of the opportunites than even specialist Neurologists.

      I want to be careful here about sounding like we're all asserting that all doctors are out of date. Some surely are, because these days nobody can know everything; my own oncologist agrees - in his words: "Nobody can keep up with everything, unless they're a sub-sub-specialist, as I am."

      Sub SUB specialist. Wow.

      The problem arises when doctors or patients THINK that doctors can know everything, and they get huffy (docs) or upset (patients) when they discover it's not true. Until they wake up, they're all in denial, and you can never fix something if you deny its existence.

      So this is the work of the Society for Participatory Medicine. I for one speak at a lot of conferences www.epatientdave.com/schedule of all sorts, and an increasing number of others are doing so too.
      • Jul 28 2011: I agree that NOT all doctors are out-of-date. I also agree they cannot know everything. I believe that many neurologists I am referring to, that direct ALS clinics would be sub specialists. The trials I am talking about are FDA trials, not unproven treatments. But they all seem to be familiar with only the ones for which a trial sponsor has agreed to use their site as a trial site. So, there is a certain financial incentive to recommend trials at a given clinic, but they are also not even aware of others.

        I am curious if there is a central resource for cancer trials that could be a model for other ailments? Even multiple large non-profits ALS organizations are not consolidating and sharing data.

        Thanks,
      • Jul 28 2011: Yes, very familiar with clinicaltrials.gov and PatientsLikeMe. But even, with a rare disease like ALS, 200 active trials appear in a search at clinicaltrials.gov. Most are not all that exciting, in terms of targeting actual disease progression. And, it is surprising that many ALS spe ialists are not even familiar with all the much lesser quantity of phase 2 and phase 3 trials that do. Our ALS forum users are, but we are probably 10% of all patients. PLM just duplicates clinicaltrials.gov data, but has a nice interface. It defaults to trials very near home.

        Thanks for your input!
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      Jul 28 2011: But, to bring it back to the point: as I cited in my TEDTalk, most kidney cancer patients are never told about HDIL-2 (my treatment), for two main reasons: the published info about it is out of date compared to clinical reality, and it's difficult to administer, so most hospitals don't offer it.

      But "patients know what patients want to know," as the video says, and we tell each other what we know, whether or not our physicians do.

      In my case, among the 4 docs my patient friends recommended, one of them was the doctor I was already being steered toward. But that's NOT what most patients experience.
  • Jul 27 2011: Hi Dave
    In my experience as a gynaecologist, I see many colleagues who underestimate the power of patients. They don't think that patients need to have access to their data, because they are not experts and won't understand the data. Who to deal with these colleagues? Wait till they retire?
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    Jul 27 2011: Dave, I feel that health care has become a conversation debating money more than anything else. Patients don't understand just how valuable they are as a resource from the beginning. People are more concerned first and foremost on whether they can afford to "be healed" or "get healthy" via doctors and hospitals.

    Just my thoughts.
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      Jul 27 2011: Right, HC has become all about the money - at least in the US. But this issue - patients as submissive, passive objects, to whom medicine is "done," existed long before then.
      • Jul 27 2011: Yep my gramma hated doctors and although the stint in her chest meant she could breathe better she loathed the doctors for helping her NOT smoke.
    • Jul 27 2011: That is true Corvida, and like any other market if they were to take all of their marbles and go home, someone would have to actually recognize the power of the patient. I think that is the missing element, the patient actually knowing how powerful they really are!
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    Jul 27 2011: Hi there, first of all thank you for taking the time to have this conversation with us, this is truly a great opportunity.
    I was just wondering what you think the first steps should be in order to (re)-place the patient at the center of healthcare and how can ICT help us achieve this, as I truly believe we should neither under-estimate or ignore these new tools ar our disposal?

    Thank you
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      Jul 27 2011: Things like healthcare practitioners (HCPs) educating/encouraging patients on daily self-tracking is a great first step. Technology from Health 2.0 in the US is changing a patient's ability to engage with their practitioners with their own data. I'm part of scriptyourfuture.org -- a campaign working to empower patients to ask questions about their medications - why do I take this? how do I best take this? what should I watch for? - and not just take something without understanding it. We need to keep growing the grassroots on patient empowerment!
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        Jul 27 2011: I agree and the European Union needs to get on board asap.
        As always we are far behind when it comes to ICT, but I think health 2.0 is now starting to be high on the agenda. Thank you for your responde Whitney
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          Jul 27 2011: I think the European Union is doing quite a bit, actually, if you look at the Digital Agenda. I attended the Digital Agenda Assembly this year, its 1st anniversary, and met with several folks working on ICT issues. Impressive agenda for the next ten years and it includes some REALLY phenomenal advancements regarding tech in Healthcare. "Doctors 2.0" was linked to it in many ways and I believe much transformation will unfold.
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        Jul 27 2011: The problem is that the EU sets out very impressive and ambitious projects and agendas so much so that we go in every direction and loose focus. I completely agree with you that the motivation and ambition is there and the EU's digital agenda( actually well I will start working soon) is stronger than it has ever been. I just hope we reach our goals that we have set for ourselves.

        And we need to look to our US counterparts for inspiration that is all I am saying
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      Jul 27 2011: By ICT I'm guessing you mean internet communication technology, everything from email to web. Yes?
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    Jul 27 2011: Folks, please use the red REPLY link when you're replying to someone, so the threads stay together. Thanks!
  • Jul 27 2011: I had a fascinating and frustrating experience as my wife lay in a coma and dying. I found that I was the real conduit for communication between the various specialists who flitted in and out of the ICU. Our primary care doc and I had to really have a strong alliance to get up to date information and to adjudicate among the various competing opinions on various issues. What happens to those without either voice or advocate, the widowed, the elderly, those with family in other countries?
    • Jul 27 2011: Good question and the so much for that advanced directive or does that actually help at all Lowell? How did you end up being unheard when your wife could not speak for herself?
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      Jul 28 2011: > I was the real conduit for communication between the various specialists who flitted in and out

      Absolutely. This is the problem called "silos." It traces directly back to medical school, where for some damned reason most doctors are apparently TAUGHT that their business is to be excellent in THEIR specialty. This is an essential flaw that we need to correct.

      In my own case, when my cancerous kidney was removed, most of the post-surgical nurses had not been told that my leg was in the process of breaking from the cancer! So they came in and told me it was time to stand up, post-surgery, not even realizing I had a walker in the corner.

      And NOBODY ANYWHERE felt it was their job to coordinate my care. And this was in a great academic medical center!

      > What happens to those without voice or advocate?

      They are very OFTEN harmed. Last November the Inspector General of Health & Human Services audited a batch of records and concluded:
      - 1 in 7 Medicare (elder) patients who enters a hospital is *harmed* accidentally
      - 1 in 70 is KILLED accidentally! (1.5% of all Medicare patients who enter a hospital experiences an error or infection that KILLS them.)

      Hard to believe? Check it out: http://watchdogblog.dallasnews.com/archives/2010/11/report-finds-harmful-medical-c.html That's a blog post, and it links to the original report http://oig.hhs.gov/oei/reports/oei-06-09-00090.pdf

      The solution, as far as I know, is for patients to be as involved as possible with every detail of what's going on during hospitalization. In my view no patient is sure to be safe without vigilance; hospital workers don't have systems to HELP them perform perfectly.

      For heaven's sake, Let Patients Help. And their families, caregivers, and advocates.
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    Jul 27 2011: Hi Shawn - I know first-hand from talking with many docs that some do indeed do think that. But any idea of how it got that way?
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      Jul 27 2011: I believe that it got this way because of like Whitney just said “ego.” People are very egotistic about the things that they do and to have someone come into your office and tell you what they believe is true is sometimes threatening to doctors because they went to school for it and they got the degree.
    • Jul 27 2011: How did it get that way? From generations of putting our doctors on a pedestal. Years of never questioning anything they told us. Now we are a little smarter and some of us know enough to ask questions before blindly obeying every instruction. Most Drs I have seen seldom are familiar with my chart when I get to the examination room. If I were a little forgetful, heaven knows what I'd be taking (Rx). We must start taking back the responsibility for our own health by being better informed and to better communicate our concerns to our doctors.
  • Jul 27 2011: Is there a posibility that the medical information create many self-medicate patients that makes harder the medical attention?
  • Jul 27 2011: I agree w/Shawn in some respect it is a form of arrogance. However, I am encouraged to see a few doctors who have learned the art of listening and asking relevant questions. Doctors and patients need to understand that good communication is essential to a good outcome.