Precision medicine involves the development and application of targeted therapeutics based on patients’ genomes, lifestyles and environments. The recent conference on precision medicine at Harvard Medical School highlighted a few challenges in scaling up this process.
To help further precision medicine, the Obama administration and NIH launched the All of Us program, registrations for which are slated to start later this year. Its aim is to collect health data from one million Americans.
But the conference also highlighted several tools that patients can use proactively to collect, share and analyze their own data and use it to improve their own health — and contribute to precision medicine as citizen scientists.
Sync for Science
Sync for Science (S4S) is the main data collection system for the government’s precision medicine initiative. As patients, HIPAA grants you the right to possess your health care records. S4S gives you the ability to collect and share your electronic health records (EHRs) with scientists through an application programming interface (API).
“The value proposition here is really putting consumers in control of how they share their electronic health record data,” said Joshua Mandel, MD, research scientist at Harvard Medical School’s Department of Biomedical Informatics and co-lead on the project.
Having partnered with EHR software providers like Epic, Cerner and athenahealth, Sync for Science helps route patient EHR information to researchers.
“It gives patients not just the right [to share their data] which they’ve always had, but also the technical ability to make that decision and feed that data into a third-party app,” added Mandel.
Each individual has varying susceptibilities to diseases and varying responses to treatments dependent on genetics, lifestyles and stresses. It is this patient experience that PatientsLikeMe captures, providing a more holistic, dynamic understanding of illness. Heywood calls it a “GPS for your moment in time.”
The information that PatientsLikeMe stores paints a picture of your disease and its interactions with all the other factors in your life, regardless of any treatment. “This is about collecting the null hypothesis – the value of inaction,” said Heywood.
The platform also gives you the option sharing your information. PatientsLikeMe has published about 100 scientific research papers over the last ten years based on its patients’ data.
Noga Leviner started PicnicHealth after being diagnosed with Crohn’s disease and discovering that gathering your health records from various hospitals is no easy task. She encountered a variety of logistical hurdles. “A few people in medical records offices were mean to me, and because I have a giant chip on my shoulder, I started this company to get back at them,” said Leviner, only partly in jest.
With an “I’ll-show-you attitude,” she turned her attention to making EHR aggregation simpler for patients all around. Once you approach PicnicHealth, it is the company’s job to gather your health records from all the doctors you have ever visited, even paper records that they will digitalize. This information is then organized into a concise personal health timeline. As long as you’re subscribed to the service, you can send all your records to your doctor before your next appointment or even download it to your mobile device.
“The healthcare system already moves data around between providers. Putting the patient in the middle is just a way to make sure it actually happens effectively,” said Leviner.
Started by Joe Pickrell, PhD, a Core Member of the New York Genome Center and his colleagues, Gencove adds a collaborative aspect to the genomic testing offered by companies like 23andme. A simple swab of your mouth captures ample numbers of cells that tell a story, not just about your genetic ancestry and disease risks, but also about your microbiome — which bacteria flourish within your mouth. Gencove (formerly known as Seeq.io) encourages patient participation and pooling of data. Researchers can also use Gencove as a data collector for any studies run through the company.
Playing your part
Precision medicine initiatives and personalized healthcare are heavily reliant on patient engagement in research as citizen scientists. With these and other platforms becoming available to patients, it is too early to know which will be the most transformative. Data security and privacy are also potential concerns once data are liberated from the confines of the healthcare system.
As Heywood stated, “We are at the beginning of this journey.”