Citizen Medicine

As the field of medicine advances, it is becoming more precise. 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.

Isaac Kohane, inaugural chair of the new HMS Department of Biomedical Informatics, has long been at the forefront of innovation in this area.

To spark further public discussions, Kohane and his team have organized a symposium on June 24-25, titled Precision Medicine 2015: Patient Driven, a free and public event in which both academics and patients will gather to consider the ethics, economics and regulatory challenges of this emerging field.

Harvard Medicine News recently spoke with Kohane to discuss the conference themes, in particular the disruptive—and ultimately transformative—role that patients have to play.

Harvard Medicine News: What excites you most about the emerging field of precision medicine?

Kohane: That is is precise. What that means to me 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.

HM News: I’ve heard you use the term “citizen medicine.” Can you define that?

Kohane: I'll answer that by explaining who the practitioners of citizen medicine are. Individuals who take the initiative and the responsibility for ensuring that their own care, or that of their loved ones, is optimal; and where current treatments or diagnoses are lacking, they enable the necessary research, either personally or through proxies. Impressive exemplars of these are Matthew Might and Kathy Giusti (both of whom will present at the conference).

HM News: How exactly can patients be “leaders” in precision medicine?

Kohane: In the end, no one is going to care more about our loved ones than we do. That's probably 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. 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.

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HM News: This seems like a classic “disruptive” idea. Is this something that the medical establishment will allow?

Kohane: 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.

HM News: 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: 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. That is, huge economies of scale are gained if every health care system does not have to create such systems for themselves. Given that patients' care crosses multiple health care systems over their lifetime, it's also not obvious why individual health care systems should be the guarantor of record of a patient's care. My own bias is that trusted consumer groups should provide such functions.

HM News: Security and legalities aside, it’s often been pointed out that medicine is a unique area in that advances drive costs up rather than down, as opposed to, say, computer technology. Since health costs in the U.S. are at a critical level, does precision medicine have the potential to push the whole thing over the edge?

Kohane: There is a medium-term risk of unaffordability, but not a long-term risk. One hundred thousand dollar-a-year treatments are completely worth it if they are effective and save lives. Right now, they only pertain to the small groups of patients for whom such treatments have precisely been found to work. However, as precision medicine progresses and more of the common diseases get subdivided into ever more precise and therapeutically meaningful subgroups, then a larger fraction of our population will require the $100,000 a year treatment. That does not scale even if all our GDP is spent on health care. However, in the longer term, these treatment costs will be driven by market forces to affordable levels.

HM News: What do you hope to see resulting from this upcoming symposium?

Kohane: First of all, a visceral realization that precision medicine can be accelerated by patients. Second, the catalysis at the meeting of several specific initiatives to enable that acceleration. I have already had some exciting conversations in that regard with our speakers, so stay tuned.