Some Things in Life Really Are Free: Personalized Medicine Tools That Don’t Cost a Thing

By Jeanette McCarthy, MPH, PhD

Adam Voorhes

Last month, I launched an online course through Coursera, one of a number of companies offering MOOCs — massively open online courses. The topic was Genomic and Precision Medicine, and it was aimed at healthcare providers, giving them the opportunity to learn about advances in the field and earn continuing medical education. But it was also open to anyone for free. I was excited that nearly 13,000 students from more than 65 countries had enrolled and were eager to learn about genomic medicine (in fact, though, only a fraction actually completed the course). I surveyed the students to learn what they perceived as the biggest barrier to implementing personalized medicine into clinical practice. The answer was not lack of physician education, as I had suspected (that was one of the reasons for launching the course), but, rather, cost and insurance reimbursement!

Their answer was consistent with a recent article in the New York Times that discussed how physicians are increasingly weighing the costs for tests and treatments into their medical decisions. For most, it’s becoming a simple cost-benefit decision.

In the next issue of Genome, which will be available later this summer, we take a close look at the cost of personalized medicine, how reimbursement decisions are made, and how patients can influence the process. But all of this talk about health economics got me thinking about aspects of personalized medicine that are free or at least a good value for the money.

Here are a few of my favorite low-cost, high-value offerings for personalized medicine, many of which you can read more about in the next issue of Genome:

My Family Health Portrait: This tool from the U.S. surgeon general for collecting and sharing an electronic family history is available online for free. Family history remains one of the strongest risk factors for many common diseases, even better than some of the available genetic tests, and yet few physicians have time to collect an in-depth history during an office visit.

PatientsLikeMe: This online patient network allows people with the same disease to connect, share information about their condition, and learn from each other. Not only does it provide a social support system for patients with similar diseases, but it is also capturing the attention of other stakeholders. The biotech company Genentech recently announced a five-year collaboration with PatientsLikeMe to facilitate research into patients’ real-life experiences with diseases and treatment, fulfilling the vision of participatory medicine.

Rare Genomics Institute: New sequencing technologies are being used to solve rare undiagnosed diseases, but the price is still out of reach for many families. The nonprofit Rare Genomics Institute brings together patients who have rare undiagnosed diseases with scientists and physicians. It also provides a crowdfunding platform to raise the funds necessary to apply the latest sequencing technology to help solve these diagnostic dilemmas.

Cancer Commons: This nonprofit unites lung, melanoma, and prostate cancer patients with oncologists and scientists. Patients share details about their disease characteristics and experiences; in turn, they are provided with resources to guide personalized treatment plans.

Fitness Trackers: Although not free, these devices — like the Jawbone UP and the Fitbit — are an inexpensive means for patients to monitor their level of physical activity, one of the top modifiable risk factors for common diseases. It’s too early to say whether these or other devices that quantify health actually motivate behavior changes and reduce the incidence of common diseases, but in my household, they are having an impact!

It’s easy to think that personalized medicine is all about high-tech approaches to diagnosing and treating diseases, reserved for the few who can afford it. But as the cost of technologies like next-generation sequencing drops, you may live to see your genome become a standard part of your medical record and personalized medicine become the standard of care. Until then, embrace the tools within your reach and stay tuned!