When precision medicine ended my 23-year struggle with kidney cancer, I made it my mission to make individualized health care available to all. Now I have the good fortune to be part of a national precision medicine research effort that Americans are not only excited about but are eager to join.
The Precision Medicine Initiative, launched by President Obama in his 2015 State of the Union speech, aims to extend the concept of precision medicine — the right treatment or prevention plan for the right person at the right time — beyond cancer, where we have seen great progress, to all health conditions. A key part of this effort involves building the Precision Medicine Initiative Cohort Program, a group of at least 1 million Americans who will donate data about themselves, everything from health records to genetic sequences and diet surveys.
Over the last year, several thousand Americans from all parts of the country and all walks of life were surveyed about what they thought about this cohort.
The results, recently published in PLOS ONE, were very encouraging. More than half of the 2,600 respondents (54 percent) said they would definitely or probably be willing to take part in the program if asked. Younger people were a bit more likely than older people to be interested. Respondents’ education mattered a little bit, while race, ethnicity, and income had little influence. The responses to the survey left me hopeful that we will be able to achieve the program’s goals to engage diverse populations who have been historically underserved and understudied.
More than three-quarters of respondents reported that, if they were to join the cohort, they would be willing to contribute their family medical histories; data on lifestyle, diet, and exercise; soil and water samples from their homes; and genetic information. Again, our goal of having a dataset with some of the most rich, diverse data types ever — including wearable and smartphone data at some point — seems plausible.
The survey findings can’t predict actual enrollment numbers, but they give us reason to be optimistic. This level of interest reflects what I’ve experienced since I was chosen to direct the cohort earlier this year. Family members, friends, and coworkers from previous jobs almost immediately started asking me how they could sign up to be part of the cohort. I’ve even been deluged with email requests from strangers who want to take part. While we aren’t yet ready to enroll participants, I’ve been impressed with the variety of the individuals who have reached out and their level of interest in the initiative.
The Million Veteran Program, another important piece of the Precision Medicine Initiative, now includes more than 500,000 veterans and is growing. Enthusiasm from the veteran community to participate in this complementary study gives us more reason to believe in Americans’ desire to step up and participate in something with the potential to improve health for future generations.
Guided by thoughtful and rigorous Privacy and Trust Principles that were designed to ensure the integrity and confidentiality of all data, our objective is to understand new and complex risk factors for disease that we have never known before.
The Precision Medicine Initiative Cohort Program is unique for several reasons:
It will be extremely diverse. The cohort will reflect the American melting pot in every way possible: age, race, ethnicity, education, income, occupation, geography, climate, and the like. It will cover a diversity of health conditions, since participants aren’t being recruited because they have a particular disease, like cancer, or excluded because of one. It also will be designed to handle data diversity by accepting clinical data, biospecimens, information from participant questionnaires and electronic health records, and real-time data from wearables and other consumer health devices.
It is participant-centric. Members of the cohort can choose to be full partners in the work, providing input on program design, recruitment, and even suggesting what research questions to ask. They can also choose to just donate their information and be done with it.
The Precision Medicine Initiative Cohort Program can break new ground in another way by giving participants the option to receive their individual data, as well as study findings from across the cohort. This shouldn’t be an advance, but it is. In my own fight with cancer, I took part in numerous clinical trials. I gave researchers a lot of information, but got little or none in return without fighting for it. What we learned from our conversations with potential participants is that some people want their own information as soon as they can possibly get it and may even share it on social media, while others aren’t the least bit interested in seeing their data. There’s room for all of them in the Precision Medicine Initiative Cohort Program, and one of our priorities is to give this information back quickly, responsibly, and consistently.
Taking a lesson from the way Silicon Valley and other tech companies develop big data platforms, we are taking a user-centered, iterative approach to designing and piloting the Precision Medicine Initiative Cohort Program. We will launch when we have all of the pieces in place and can deliver a high-quality experience for our users and a trusted, secure infrastructure. Our initial pilot work is well underway. We plan to launch in phases, making improvements as we go, beginning as early as late fall or early winter. Stay tuned, and please think about joining us!
Eric Dishman is director of the Precision Medicine Initiative Cohort Program.