Traditionally, a “prescription” meant a piece of paper that got you a vial of pills or other medication you were meant to take until your next meeting with your doctor. Today, health professionals increasingly recognize that LEARNING is part of the prescription -– if you want people to thrive with their condition, that is.
The Health 2.0 conference I attended last week was all about different approaches to this topic: how do patients best learn to manage their chronic illness –- or if they have no conditions, how do they best learn to do what needs to be done to maintain their good health?
The focal “great debate” at this event was –-
* the Health 2.0 approach: patients independent use of interactive web technologies,
- versus something called
* Information Therapy: the practice of doctors prescribing and/or making available “evidence-based health information to meet individuals’ specific needs and support sound decision making”
In other words, Health 2.0 is a grassroots-up approach to patients learning, versus Ix therapy, which is physician and institution-driven.
Both of these are useful and necessary if you ask me. After all, blogs and social networks are great for self-motivated patients who seek them out, but lots of people still don’t know about them or feel empowered to give them a try.
Ix Therapy can be a nice catalyst to make those unconnected patients aware of these tools, and to push more inert patients into becoming more proactive. (Wouldn’t it be neat if physicians would actually tell people newly diagnosed with diabetes about our online communities and how they can help?!)
But my point was that simply having doctors point patients to some studies or emailing them some data sheets is not enough. Not nearly enough! True learning comes from personal involvement, as Confucius says:
These cocktail napkins were my somewhat cheeky contribution to the event, served during Thursday’s afternoon break. Nothing like watching people wipe their mouths with your cherished wisdom 
Meanwhile, myself and the handful of other model “empowered patient” types present at the conference were striving to make these business-folk and engineers understand what we want: tools that are super-easy to use and give us some real, tangible and useful outcomes. By that I mean, we don’t need yet another “health records portal” where we’re expected to manually enter every detail of our diabetic lives -– in the hopes that some health professional will review all this data at some unspecified point in the future.
btw, I’d like to say: kudos to these kindred spirits who’ve likewise turned their chronic illness into their life force –
Trisha Torrey, online patient advocate, and expert at About.com
Matthew Zachary, founder of the I’m Too Young for This cancer foundation
Win Hodges, family patient advocate
Susan Edgman-Levitan, prolific doctor patient advocate
and a smart guy affectionately called ePatient Dave, who got national media attention lately when he looked into his own medical records, and found history of a stroke he never had.
Yipes! Obviously, being a proactive patient/advocate and seeking out a little knowledge goes a long way.
Now, given that many doctors are too busy to know which health sites have the real deal, which sell snake oil, and which serve up unaged cow droppings (and I’ve seen some real BS mixed in with the gems on some of those “for doctors in…” portals), who will be the professionals’ equivalent of Health News Review — or the patient-and-doctor-trusted source of news and information on a specific health condition?
Your blog noted the serious concern you have for medical research and cures. I encourage you to visit http://www.specterforthecure.com to see how together, we can unstrangle the cure and medical innovation with Sen. Arlen Specter’s help.
Thanks for the great write-up. I do want to clarify that, at least in my opinion, Ix (information therapy) is not always a top-down, doctor-prescribed sort of thing. Ix involves getting the right person the right information at the right time in order to make informed medical decisions. For example…
Diabetes runs in my family and I have always had issues with blood sugar. During the conference, I almost passed out several times. The people who were with me at these times (the right times) to help me the most were a coworker with no medical background, an MD, and a health policy wonk I know through Twitter. Each of these people helped me realize what was going on by asking questions and sharing information. It was the health policy wonk who followed up with me over the weekend to make sure I had someone keeping an eye on me, ate properly, didn’t drive, etc.
The wonk is diabetic. She gave me exactly the right (evidence-based) information at the right times in order for me to mentally process what was going on over the course of several days. I thank her the most for making sure I am in communication with my PCP this week to get evaluated for diabetes.
I prefer to see Ix as being consistent with the information people need as they live their lives. Most of us are lucky enough to spend only a minute fraction of our lives in an actual health care setting. Ix is also for every day life. It’s something we can help each other with, even if we don’t have MD behind our names.
You are so very right – “True learning comes from personal involvement” as does True empowerment. I use the same confusious saying at the beginning of my patient school. I firmly believe that patients need to go beyond capturing their info in a personal health record – they do need to do it, but more important than capturing the info is learning how to use that info when they see a healthcare provider.
They need to learn how to help the doc connect the pieces of their story and help them think & consider alternatives. They need to have their medical record on their lap (set up in a way that they have fingertip access to their info) when they talk w/ the doc, not in a computer hoping the doc will look at it.
Each patient/caregiver needs to be intimately knowledgeable with the details of his/her or a loved one’s health and know what information to provide and how to provide it in the right way at the right time. He/she also needs to know the right questions to ask in the right way at the right time.
All of the systems and programs being developed because patients don’t know how to be patients will never take the place of savvy patients/caregivers. The medical system will never be fixed until patients do their part.
You are correct that personal involvement with a patient and providing him or her the detailed information they need to be healthier is a critical part of health care. That’s one of the reasons why I began my blog at http://www.dentistryfordiabetics.com/blog — to provide people with diabetes information on the links between dental health and diabetes management. We write extensively about diabetes and its impact on lives and also about the importance of good dental care and how that can aid people with diabetes in their metabolic control.
Charles Martin, DDS
Founder, Dentistry for Diabetics
very good idea….nice strategy for treating illnees
[...] the value of treatment adherence. Amy Tenderich, writer of the famous blog diabetesmine calls this treating illness with information: “Traditionally, a “prescription” meant a piece of paper that got you a vial of pills or [...]
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