- e-Patient Dave deBronkart
- Nashua, NH
- United States
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.
PJ Bird
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.)
Craig Velenski
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
E G 10+
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) .
PJ Bird
.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
Sarah Baron
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.
e-Patient Dave deBronkart 50+
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.
Sarah Baron
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!
PJ Bird
e-Patient Dave deBronkart 50+
Best,
Dave
e-Patient Dave deBronkart 50+
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!
Jimmy Strobl 30+
e-Patient Dave deBronkart 50+
Jimmy Strobl 30+
What I'm purposing is something like many of the website links that have been shared on this conversation... but in a TED format.
e-Patient Dave deBronkart 50+
"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?
Jimmy Strobl 30+
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...
Carrie Meyer
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!!
e-Patient Dave deBronkart 50+
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.
Danielle Bonney
Jamie Gasser
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
Sharon Turner 500+
e-Patient Dave deBronkart 50+
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.
Vera Struck
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!
Vera Struck
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.
e-Patient Dave deBronkart 50+
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.)
Sanyu Nagenda
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
e-Patient Dave deBronkart 50+
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?
Sanyu Nagenda
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
e-Patient Dave deBronkart 50+
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.
Sanyu Nagenda
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.
e-Patient Dave deBronkart 50+
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.
Sharon Turner 500+
Sanyu Nagenda
JOanna Kaufman
e-Patient Dave deBronkart 50+
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.
e-Patient Dave deBronkart 50+
Sharon Hawkes
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.
Remco Hoogendijk
e-Patient Dave deBronkart 50+
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?
Autumn Frisco 10+
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
Jim Moonan 30+
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.
e-Patient Dave deBronkart 50+
Jim Moonan 30+
e-Patient Dave deBronkart 50+
Jenna McAsey
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.
e-Patient Dave deBronkart 50+
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.
John Schmidt
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,
e-Patient Dave deBronkart 50+
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.
John Schmidt
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.
e-Patient Dave deBronkart 50+
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.
John Schmidt
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.
e-Patient Dave deBronkart 50+