July 7, 2015

Is Citizen (Patient) Medicine Really Here?

I need to thank Gretchen Becker for giving me this topic. While I doubt that I will see a lot of this citizen medicine happen in my lifetime, I expect that my son and daughter will experience this on a broad basis. Even though this is being played up and a very few doctors are working to make this happen, the mainstream medical community is still bickering about allowing patient centered medicine and coming up with “less is more” campaigns to confuse issues. State medical boards are also attempting to prevent much of the forward progress of medicine by opposing telemedicine and other innovative trends in medicine.

Diseases once thought to be monolithic are now being broken into subgroups, sometimes even into entirely new classes. While such novel classifications might be challenging to physicians, increased access to data is enabling patients to play a greater role in managing their care, often in ways that circumvent traditional health care protocols. The recent $215 million Precision Medicine Initiative established by the Obama administration marks a clear recognition of this changing reality.

Harvard Medicine News (HMN) recently spoke with Isaac Kohane, inaugural chair of the new HMS Department of Biomedical Informatics. Kohane has long been at the forefront of innovation in this area. HMN wanted to discuss the conference themes, in particular the disruptive—and ultimately transformative—role that patients have to play.

Kohane says what excites him most about the emerging field of precision medicine is 'that it is precise.' What that means to him is that it is going to be data-driven, both by our individual characteristics, but also by the accumulation of such characteristics across all the other patients who are like us. Rather than an anecdotal personalization, through precision medicine we have at least the promise of data-driven medicine, in the same sense that Netflix and Amazon give data-driven recommendations. In current medical practice, such data-driven behavior is largely an aspiration only.

In speaking about patients as “leaders” in precision medicine Kohane said, “In the end, no one is going to care more about our loved ones than we do. That's as it should be.” Furthermore, the rarer (and therefore the more precise) someone's diagnosis, the more likely that that patient is going to be more expert about their own condition, and current diagnostic and therapeutic approaches, than the traditional care providers are. That combination of passion and expertise allows patients to influence the direction of research, influence how data is shared among researchers and how data is shared among health care providers, influence how legislation enabling precision medicine is written, and influence the economics around the delivery of precision medicine.

Kohane continued that the medical establishment has a lot on its plate. Most of what does not get done is attributable to inertia, and only occasionally, to parochial motivations. Regardless, patients are the ultimate customers of these establishments, and the more vocal and the more clear they are in their preferences; the more likely they are to overcome this inertia. Moreover, forward-looking health care systems will figure out how to enlist and empower these patients, to improve the overall care process.

When asked how can we ensure that patients’ private data remains private? Will this require exorbitant costs, both in legal costs as well as in cyber-security infrastructure?
Kohane answered, “First, we have to acknowledge that what is currently private with respect to research activity is often not private with regard to commercial activity. In plain English, your data is already being routinely shared and sold for commercial purposes. It's much more challenging to obtain patient data for research. There's a longer story there about distorted incentives, but suffice it to say that with a patient's explicit consent and control, maintaining privacy and control is not necessarily expensive or difficult—with correct governance and correct large-scale implementation.”

I did not quote all of the information as I feel that from what Kohane says is farsighted
and opens the dialogue for further discussion.

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