This post is part of Exploring a Culture of Health, a citizen science series brought to you by Discover Magazine, SciStarter and the Robert Wood Johnson Foundation, serving as an ally to help Americans work together to build a national Culture of Health that enables everyone to lead healthier lives now and for generations to come.
Nicholas Volker aged six, from Minona Wisconsin had suffered from a highly inflamed intestine since he could walk 1. The strange disease that his doctors could not diagnose required no less than 100 surgeries. Dr. Alan Meyer, Nic’s doctor and a pediatrician at Children’s Hospital of Wisconsin eventually decided to try a radical form of diagnosis—DNA sequencing. What Dr Meyer and his team found was a rare, ‘undiagnosable’ disease—one that could only be treated by a bone marrow transplant from umbilical cord blood.
Though he was eventually treated, Nic, his parents and his doctors had gone through a long and painful ordeal in searching for the cause of his disease. Nic could have experienced a far easier path to his eventual treatment if we had a better understanding of our genome and how it relates to diseases. While many research efforts are focused on deciphering our genome, accelerating basic research and its translation to the clinic requires an integrated effort on a much larger scale. Importantly this effort should involve the participation and more meaningful collaboration of citizens and patients in research.
“People who live with a disease every day are untapped experts. Allowing their data and experience to inform the medical discovery process will increase the likelihood that the resulting discoveries and clinical encounters give them the opportunity to live healthier lives, and will help us build a national Culture of Health,” says Paul Tarini, a Senior Program Officer at the Robert Wood Johnson Foundation (RWJF) which supports transformative ideas through its Culture of Health initiative.
With support from RWJF, several efforts are underway to explore how data, insights, and knowledge contributed by patients can further medical discovery and improve health care.
Partnering on research
BRIDGE, operated by Sage Bionetworks, is an online platform where patients can track their health data and work together with researchers and funders as virtual teams on research. “What this means,” says Thea Norman, director of Strategic Development at BRIDGE, “is that for someone who is interested in becoming more involved in medical research as a patient—someone who has insight into a disease they are suffering from, and who is motivated to understand what they are suffering from—BRIDGE offers significantly more opportunity than the traditional method of research.”
Whether collected on an app, through survey or via a personal online journal, BRIDGE offers citizens a place to store their data in whatever form they record personally. This allows researchers and other patients to potentially find correlations between some of the data collected and a journal entry that provides critical information.
The added benefit for people who contribute data? “Early insights and perhaps a shorter, faster path to new therapies,” says Tarini.
A number of research projects will be piloted on BRIDGE in the coming year—all of them will engage patients as partners in the process.
Open Humans is an online platform that connects research participants willing to publicly share data about themselves with researchers interested in using and adding to that public data. In the pilot phase, Open Humans will work with the Harvard Personal Genome Project, American Gut and Flu Near You GoViral—all studies that return data to participants and enable them to share it. Eventually, scientists will be able to work with participants to create additional data.
“When research studies agree to share data with participants, something incredible is possible: people have the ability to aggregate and share that data, to be combined with other data and re-used in powerful new ways,” says Jason Bobe, program director of Open Humans. “More sophisticated research questions and new insights become possible when data can be integrated from multiple research studies: does genetic background impact flu resistance? Does the community of microbes in the gut influence flu susceptibility?”
Improving treatments and clinical practice
PatientsLikeMe’s Open Research Exchange (ORE) is another platform that gives both researchers and patients a space to work together. The goal of the Open Research Exchange is to identify health outcomes that are meaningful to patients and develop measures that assess treatments or clinical practices against these outcomes.
Paul Wicks, the Vice President of Innovation at PatientsLikeMe and leader of the ORE initiative explains, “Many health outcomes used today to assess the efficacy of new treatments or clinical practices were developed from the perspective of the health system—what can we measure objectively, such as a blood test, or what costs the most, such as an emergency room visit. But what matters to patients is the impact of living with disease – the symptoms and side effects, the fact that they can’t work, or that they feel stigmatized.”
A classic example of this is Alzheimer’s disease. Many trials use a test called the ‘mini mental state examination,’ which asks patients to remember simple words, or say who the president is, or cite today’s date. As Wicks notes, “Caregivers don’t bring Grandpa to the doctor because he can’t remember who the president is. They bring him because he can’t remember who Grandma is.”
Are you participating in the Harvard Personal Genome Project or American Gut and thinking about joining the Open Humans network? Interested in sharing your data and collaborating on research through BRIDGE? Want to help make health care more patient-centered through the Open Research Exchange? Start a conversation in the comments below about what would incentivize you to use these platforms and participate in collaborative research to build a culture of health.
If you want to do more, you can always contribute to other health related citizen science projects below that are on SciStarter, an online hotspot for citizen science!
1. A story of faith and one tough boy” Dec 25, 2010 Milwaukee Journal Sentinel http://www.jsonline.com/news/opinion/112397804.html
Logos for Open Humans and the projects that contribute to it were obtained from openhumans.org. The Open Research Exchangelogo was obtained from openresearchexchange.org