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e-Patient Dave deBronkart

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

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"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.

Topics: Healthcare
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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: Brilliant, Lucien. You're an MD, right?
      • Jul 27 2011: As HC institutions we have to lister very very good to what e-patients like Dave tell us. THEY are the experts in HAVING a disease 24/7 and have the experience of suffering from it. HC pro's know how how to diagnose,treat, and may be even prevent it. Having it is a different story.
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      Jul 27 2011: I like it... :)
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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: 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: 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: 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