e-Patient Dave deBronkart
Dave deBronkart, better known as "e-Patient Dave," is the world’s best-known advocate for patient engagement. International keynote speaker about patient-clinician partnership.
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Wow - 50,000 articles!
I agree that learning to apply evidence correctly, and learning to read papers carefully, is important. Do you know of a reliable way to do this, or does it simply require years of hard work?
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> What is bad is to self-diagnose something based on
> what you read on Google without consulting a doctor!I agree. I too have a story where I had a symptom (not related to the cancer) and I learned everything I could, then sent him my the details and a web link and asked "What do you think??"
In some speeches I tell this story, and say "I wasn't...
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Excellent! Everyone, read Ljiljana's reply - it's a perfect "awakening" story as a physician experiences something new and realizes it's not a threat, it's a new possibility. Well done.
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I fully support your worries about the time limits on visits. I think it's an insult to the physician and dangerous for the patient.
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The money situation in the US is disgraceful. One insurance company recently said they're going to stop offering insurance on the "exchange" (Obamacare) because it doesn't make economic sense (they can't afford it), the same week that they announced their CEO was getting a bonus of millions of dollars.
To understand healthcare costs in the United States see...
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p.s. So good to meet you! On Facebook as well as here.
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Good for you! And him!
An important point here - this empowered patient/family did not put all the burden on the doctors.
In your profile I see it says "CMO." Is that chief marketing officer, chief medical officer, or other?
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> I would make sure that the information I was getting was from
> a reliable source, or I would discuss it with my doctor.Exactly! In fact I do both. During my cancer I would *always* check with my oncologist: "I found this information online - what do you think? Is it good?"
Note that my oncologist - one of the best in the world for kidney cancer,...
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Yes, but they may need help at understanding it. I'm a college graduate but I still find most medical journal articles hard to understand.
Interestingly, I get the most USEFUL help from other patients who are familiar with the material from a patient's point of view. As I always say, I'm not trying to BE the doctor, I'm trying to be the best partner I can...
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Completely agree! In fact you hit the nail on the head.
In my short video you may have noticed the definition of empowerment that I use. Today I blogged a longer discussion of it. Please look: http://www.epatientdave.com/2016/01/07/its-time-to-adopt-a-good-working-definition-of-empowerment/
What do you think about the 19 year old in the UK who died...
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Were all of those specifically useful for gastroenteritis?? (Including your anxiety and depression issues) Or just generally useful?
I'm particularly interested in whether the patient groups taught you things about the interactions of the different issues, which you did not hear from individual clinicians in their specialties. They all have their areas of...
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Hi Ljiljana - what a great statement - "my patients have found something about their disease treatment that I have never heard of."
Many clinicians say that this can feel like a threat to their wisdom and their education. Was this what felt uncomfortable to you? How did you deal with that?
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Hi Victoria - how do you find the time to do that with the patient? Many clinicians talk about the limited time they have for each visit.
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I too used everything in my power. Here's a video I recorded about the mind, and about facing death, when I was at the Mayo Clinic last March: http://www.epatientdave.com/2015/04/30/mayos-healing-words-program-reading-from-facing-death-with-hope/
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My doctor agrees: "Hey, if a home remedy solves your problem, that's great!" But of course nothing is ever certain - we have to try things and see what works. And, as with the English girl who died when her doctors said "Stop googling," we have to keep our eyes open.
You have an interesting observation about forum users taking the first suggested...
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Yes, June - "be shown how to most fruitfully do that"! That's what I meant when I said "Googling is a sign of an engaged patient. Don't stop it - improve it!" Exactly.
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I agree with everything you say :)
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In "Doc Tom" Ferguson's paper about e-patients, which is a free download on e-patients.net, he talks in particular about the value of online forums for mental health issues. It lets patients and caregivers connect with others anytime day or night, so you can do it when you're feeling up to it. Do you know the community called PsychCentral? One of the SPM's...
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Can you name any online forums that you found useful? I have a very humble list of such groups on my website www.epatientdave.com/communities and if you have one that you think is good, I'll add it.
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Re the amount of information and finding the right solution - see my other comment a few minutes ago https://www.futurelearn.com/courses/social-media-in-healthcare/1/comments/9391047
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Hi Ron - yes, slide 25 in my video showed this graph from the Institute of Medicine - over 2,000 new articles per day. http://www.ncbi.nlm.nih.gov/books/NBK207212/figure/fig_S_1/?report=objectonly
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Thanks! What do you find useful in it?
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There is another issue, even deeper than finding the right information: for anything except common conditions, diagnosis and prescribing are done with a lot of UNCERTAINTY ... things are much less certain than we all hope. THIS IS NOT A CRITICISM OF THE MEDICAL PROFESSION - unless it DENIES this problem, and insists on saying "I told you this is the diagnosis...
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Hi Eileen - I *love* #medlibs, as medical librarians are called on Twitter (at least in the US). Here's a real-time Twitter search for the hashtag: https://twitter.com/search?f=tweets&vertical=news&q=medlibs&src=sprv
You're tying this issue to the point I raised about the importance of having the most current information at the point of need, yes? You're...
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I'm glad you like it - have you had a chance to do any of these things in your work?
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Ha! I didn't mean to knock the air out of anyone. :) When you've collected your thoughts, let's discuss.
Especially, I'm recently realizing that nursing may be the BEST access point for making participatory medicine a reality, since nurses have a lot more face-to-face contact with patients and families.
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Where is "here" for you, Richard?
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Yes, go live with your blog!
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Thank you - that's great to hear, Rose! I hope to be very active here this week.
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> What could be the solution?
Great question. I think the answer is to empower the consumer by improving his or her knowledge and sophistication. Every time this happens in society, at first the knowledgeable people say "It's not possible - those people don't know anything." But that statement itself is disempowering.
I am the leader of Week 6 of this...
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I would also add that social media can most definitely be used for quality improvement, because it lets leaders hear directly from people with problems ... but this will be effective only if leadership WANTS TO HEAR ABOUT IT.
I know a healthcare board chairman who takes Twitter questions from anyone, specifically because it lets him find out whether "the...
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An enormous amount of practical information on this week's subject is available from the expert professional community at the Mayo Clinic Center for Social Media, mentioned in this week's opening lecture. Follow the #MCCSM hashtag or look at the free or paid content here http://socialmedia.mayoclinic.org/ (I am a volunteer advisor to the center.)
