From Hippocratic Oaths to Health Tribes

The next big step in healthcare will NOT come from the medical community. It will not. The next big steps in healthcare needs to come from the patient community. Enough. It is over. Experts say something, other experts point in the opposite direction, and the general public falls through the cracks of information overload (many opinions, no conclusions) resulting in a standard of care far from ideal and confusion for the patients. Am I too extreme? Well, look at these examples with hypertension and diabetes. Medical communities fighting for guidelines, when the costs of healthcare skyrocket (in the US) and the patients are getting poor treatment/care (also in the US) according to this study.

Eric Topol highlighted this already in his The Patient will see you now (as you could have guessed from the book title): patients need to take control. Doctors do take their Hippocratic Oaths, and yes, they commit to help their patients. But such oaths also include references to the need to hide certain information to the patients for their own safety/security. Is all information available to the patient? Well, clearly not, and transparency is not something the medical community or the system is willing to embrace.

This is obvious in medical practice, where transparency is lacking all over, and the consumer misses big (and relevant) part of the information. This is not something I make up from reading books and articles. My father had major surgery in the last 5 years, removing a tumor in the pancreas-stomach area. About 6 to 8 months later, ultrasound tests revealed abnormalities, that lead to other tests, that lead to having appointments with the surgeon. In a 5 minute meeting with the surgeon (after about 10 months, a plethora of tests and anxiety build-up) the surgeon reveals that the patients' gallbladder was removed altogether as part of the surgery. He forgot to mention any of this in any report or medical file. Why? Well maybe, it was not something he thought it would be relevant for his patient to know then. I am grateful for the surgeon performing the procedure (do not get me wrong), but things do not work the way they should . Who is then in control right now? The doctor, under a system that favors patronizing patients. Again, in Topol's words:

The mere term patient suggests that we need to wait for the doctor

(to show up, to provide information he thinks we might need). Not cool. Let's level up.

I was recently delighted to read book from Seth Godin named Tribes. Short but extremely powerful. In this book Godin argues that there are only two main ingredients to make a tribe: a common interest, and a way to communicate. Godin argues that there is no reason you should not start your tribe right now, in the age of communication, where finding people with common interests is easy and accessible in your handheld. Although Godin hints his recommendations are about starting your own company and being an entrepreneur, I can clearly build a bridge between tribes and the health community. Online health communities like PatientsLikeMe are already starting to do this and (again) Topol already mentioned this in his book. In my (humble) opinion though, this happens only for really rare or terminal cases. Maybe re-phrasing, this is more the exception (usually associated with sickness) than the rule (we should associate it with health).

LETS MAKE HEALTH TRIBES

Your doctor says you need to lose weight and exercise. He does not tell you how, just what. Make a tribe with people that need to lose weight and they will share how they manage to do it and interchange opinions. They will recommend weight scales and times of the day that works best for them to exercise, they will recommend how often you need to weight yourself, etc. This is like AA, but with your own sickness, not only with alcoholism.

Well, the example of weight loss already showed some effectiveness. It is starting to happen. There's hope. A major pharma company has recently started leveraging from patient communities to influence drug development and trials. Quoting from the article in the link before:

"There’s a difference between how patients perceive being overweight and how physicians perceive it. "

And guess what, doctors tell you what to do and forget about the issue. You need to live with it every single day, not only at the doctors' office but every single moment of your day. It makes a whole lot of sense that the patient needs to take control.

A different example of how health tribes work is that one of diabetes. I have been recently in contact with a diagnostic case of diabetes in a teenager of my close environment. After the initial shock with its associated readjustment period, in recent conversations with the parents I was impressed at the health tribe associated with diabetes. Once you are diagnosed, diabetes is one of the few rare medical conditions where the patient is entrusted with performing their own measurements and regulating medication accordingly. So, indeed the patient takes the lead in the treatment of the disease supervised by the doctor. But it does not stop there, there are patient associations, guidelines and meetings of patients that help each other facing the disease. There are apps for your phone to help you estimate the amount of medication you need to provide based on your food intake. It is also extremely comforting to witness how kids are able to face such adversities (including measurement devices working 24/7, finger pricking and self-administered injections) as a routine much better than adults can or do. As mentioned before though, I strongly believe this happens in too few of the medical conditions, and usually related to the threat in immediateness associated with it.

Health tribes need to be extended. It is not (only) about survival, it is about well-being. In Maslow terms, I believe health tribes are still too low into the pyramid, and we need to drive them higher up.

Take hypertension for instance. Although it affects a sizable amount of people, it is perceived to be a much less life-threatening (at least in the short term) than diabetes. The patient is, again, provided with guidelines but it is up to them to follow up. Unfortunately the effects of not treating hypertension are not so immediate as those of diabetes, and (IMHO) that is what makes people less careful and willing to act on it. Guidelines are provided by doctors (what to do, not how to do it), and still feels like homework posted by a teacher: students need to provide proof they make progress every time they get an appointment. Using the same simile, we need to make students want to learn and take control, not obey. Hypertension needs a health tribe, so that patients get engaged to their disease, share their experiences and help each other facing the burden and living day to day. I recently read this article in the news about how little initiatives are already happening in this space. How an African American barbershop is proposing to take blood pressure measurements to their customers, so that awareness is created in the general population and the fear and anxiety of having measurements performed at a healthcare facility (so called white-coat effect) are diminished. Particularly relevant because the African American population are more likely to suffer from hypertension than the general population (40% chance of developing it!).

No excuses. Technology is on our side. As mentioned finding people with your health condition is way easier than what it used to be, but also measuring devices are becoming more and more easily reachable. These days you can get your wrist-based heart rate in pretty much every other wearable in the market, and a new wave of wearable technology for monitoring health is coming. Extending and making the proposition of Seth Godin more concrete, you have the health condition (common interest), you have the means to communicate to other people with the same condition, you have (or will have) the means of measuring it through technology and act on it.

Only one question remains, what are YOU waiting for to start YOUR health tribe?

DISCLAIMER: This article presents my subjective view on a topic. This does not represent the thinking of my employer, previous employers, my customers or any other affiliation I might have or have had in the past.

Image source - Pascal Vyncke