Skip to 0 minutes and 1 secondHi,this is e-patient, Dave debronkar. I am going to introducing this section on how patient empowerment is to improve through social media. The e-patient in my name stands for empower, engage, equipped, enable, electronic. Any of the many way now that enable by the internet patients today are able to contribute more to helping medicine acheive it's potential. I am the author with my primary physician Dr. Denice Sams, a book called "let patients help" That would be important to talk about patients helping but not think they know everything. In this introductory video First I am going to define the word "empowerment" Because we have good functional working definition for it. I will give a short version of my own cancer story.
Skip to 0 minutes and 56 secondsIncluding how to be a engaged empower patient. My oncologist says I help save my own life. I want to then shift to talking about information theory and cover some fundemental principles of information in medcine today and then talk about how the internet has changed the flow of the information. Because this alters how we can work together to acheive to the best possible. And finally I will leave you With the thoughts that when a patient is googleing. It's a sign of them being and engage patient. It's a good thing. so we should not stop that. we should to try to improve how well it works. now, the first thing is the definition of empowerment.
Skip to 1 minute and 43 secondsA lot people talk about patient empowerment is a good idea. But is it real and useful or is it just a nice, worm and fuzzy idea? Here as a great definition that I found at a conference presented by a paitient the definition is empowerment is increasing the compacity of individuals or groups to make choices about what they want and then to transform those choices into actions and outcomes This is the definition the world bank uses when they going to a new country and people don't know how to run economy or they don't how to governer themselves.
Skip to 2 minutes and 24 secondsIt is increasing their compacity to make choices and to transform thoes choice into actions and outcomes you can see how information play a role in this. Information empower people by improving people's ability to make choices and take action. So relize if you suppress information and you want. It is dis-empowers the people who use it and we don't want to do that. Social media is empowering because it bring us information. Now a shot version of my own cancer story I was discovered in 2007 that I was almost dead from kidney cancer I had a sore shouder. I got an xray and it turns out there's a tumor in my lung.
Skip to 3 minutes and 18 secondsThe best avalible information said that my medial survival was 24 weeks. Now importantly Dr. Sams my primary physician recommend I join a onlinne patient community there I got a lot of additional useful informaiton that I used to end to what my dcotor and nurse was doing for me. Notice it didn't replace them It add to them I was doing anyting I could to help to make a long story short. In last than a year. We beat the disease I havn't had any treatment since then. In British Medical Jernal in Feb.2013. My oncologist agree to be quoted saying he doesn't know if I could have tolerated enough medcine if I hadn't been so prepared.
Skip to 4 minutes and 14 secondsThat is being empowered to help to improve the outcomes. Now with that background consider some fundamental of information. The best in medicine requires the best information at the point of need. And that raises the question that how do we get that. Some people believe that doctor should know everything but that's impossible and there is new evidence that last few year no body, no doctor, nurse and anyone can contribute the best possibles. First of all there is far too much information for anyone to know all the information that could help.
Skip to 4 minutes and 56 secondsThe institue of medicine which is the toppest of medicine institution in America said that in 2012 tehre are more than 700000 medical articales publish every year that's more than 2000 per day so it is no insult to a docotr or nurse if a less trained person has found a articale that they haven't seen. The second thing to realize is the new information does not spread to all professiona instantly. it takes years. The institue of medicine also publish a paper in the year of 2000 showing on average it take 17 year for half of doctors to learn about start using new information. Clearly patients can be useful "information hunters" to help this process.
Skip to 5 minutes and 55 secondsThe third lesson is quite surpress to a lot of people but not all information medical journalsis is reliable. it turns out and we now have statements from three major medical journal editor says this first of all Richard Smith who have 25 years was the editor of the BMJ said in 2009 most of what a appears in peer reviewed journal were scientifically weak. Then Marcia Angel who was the editor in chief of the NEJM said in 2012 I beleve it was. It's smiply no longer possible to believe much of the clinical research in journals and just in 2015 Dr. Reich Horton the editor in cheif of lancet said much of the science literature, perhaps half, may simply be untrue.
Skip to 6 minutes and 51 secondsso the lesson here is the paient and providers need to work together to figure out what's the best availabile information don't assume anything is perfact and how can we move forward trying to close in on a solution works for individual patient and finally as shown in my case see, in my case I got treatment that usually doesn't work the high dose of interlukin 2. and it kills some patients but there is nothing in litereture about how the survival is. That is what I got from my patient community The lesson here is that a lot of useful information that will never be in the litereture and it's worth finding my oncologist said the best real decan is in Boston.
Skip to 7 minutes and 45 secondsWelcome the extra information that I brought to help to save my own life. The next big eye in my agenda is the internet has changed the flow of information thought the years go all knowledge live in the medical institution all medicine literature or knowledge aobut the who the best doctor and so on and travel through a way arrow from the top of the medical world down to the patient to knew nothing that is no longer true as we've just been discussing In fact we now have what we call health 2.0 where patient sometimes bring information to the case and the world we're moving into is world some people call health 3.0 and 4.0 in which we all share information together the machanism that makes this work is the social media acts like a capillaries hepling the information flow in the same way they help blood and nutrient flow in the body it is no longer scientifically valid to say that it doesn't happened this is we now understand information theory is call "shifting" from across the system to an open network and alters how thing can't happen as surely as alter the ancestor of all other information on the internet the buttom line lesson here is the googling.
Skip to 9 minutes and 32 secondswhen a patient seek information it's a sign of being to engage a patient to engage and involve working and try to underst and what's happening the only reason a patient googles for a symptom or to learn more about the disease is that they want to understand more and that can only make them a better patient. so, if they are not good at it don't stop them or tell them from doing that. improve their skills and teach them how to do it better. nurses, and community heath workders can be a great resource on this. now predictably the establishment sometimes feels threatened and tells people to stop it and they strike back.
Skip to 10 minutes and 20 secondsIn Belgian, there is a advertisement campaign that says if you search symptom in belgian in the top of google result. it shows out says "don't google it". they spend taxpayers' money on this. they have too professionly produce advertising commercial made a long story to tell people don't google and check reliable source. Googling and check reliable source are not truely exclusive. you can do both and I think you should The problem you see is when reality changes ignoring it can be tragic there is a true story that was on facebook in 2015 where a 19 year old had died 2 years earlier. she had a unusual liver cancer. she had been cured for few years earlier.
Skip to 11 minutes and 24 secondsbut she starts to feel to sick again. she and her mother googled and found out that it is recently been learnt that her cancer can come back. the doctor said stop googling. and she dead. and in June 2015 the doctor in the national health services in UK apologized for their role in her death. nobody wants that. please realize that social media empower patients by improving their capacity to make choices and turn those choices into effective actions. Please do everything you can to encourage people to make the most oppotunity to bring the best medicine to every medical case Thank you.
Patient empowerment through social media
Our guest educator, Dave, has recorded a new video just for this course. It is a short introduction of his experience and research.
“e-Patient Dave” deBronkart is a stage IV kidney cancer survivor and advocate for “participatory medicine,” in which patients are active partners with the medical system. He will be visiting professor at the Mayo Clinic in Minnesota, USA, in March.
Dave deBronkart, known on the internet as e-Patient Dave, author of Let Patients Help: A Patient Engagement Handbook advocates for patient engagement. After undergoing treatment for stage IV kidney cancer in 2007 he became a blogger, health policy adviser, and international keynote speaker. Over the past two years he has attended over 200 conferences and policy meetings and testified in Washington for patient access to the medical record under meaningful use.
A co-founder and board member of the Society for Participatory Medicine, e-Patient Dave has appeared in Time, U.S. News, USA Today, Wired, MIT Technology Review, HealthLeaders ( “Patient of the Future”). He has published articles in The BMJ, Soc. for Gen. Internal Medicine Forum, and the Journal of the American Society for Clinical Oncology. In 2009 HealthLeaders put Dave and his doctor on their annual list of “20 People Who Make Healthcare Better.” Volunteers have added subtitles in 26 languages to his TED Talk, Let Patients Help, indicating the global appeal of his message.