By Jason Bobe, MSc (Associate Professor, Icahn School of Medicine at Mount Sinai; Executive Director, Open Humans Foundation; Co-founder, DIYbio.org)
This post is part of a series on how patients are creating the future of medicine. The introduction to the series is available here, and all posts in the series are available here. Jason Bobe will be participating in an NIH videocast on return of genetic results in the All of Us research program starting at 8AM on Monday, March 6, 2017. You can tune in here.
People across the world regularly rank health and health care near the top of what they value. Yet most people don’t volunteer to participate in organized health research. This is the “participation paradox.” We appear to be neglecting the very inquiry that feeds our ability to understand our bodies and to evaluate approaches to preserve, improve, or recover health from disease.
Better advertising and more effective recruitment strategies for research studies may help drive numbers up. But catchy slogans won’t drive a cultural shift toward a new future, where research participation becomes a regular part of life and organized health research is seen as a first step toward solving our health challenges, not merely the last hope for people with devastating illnesses.
Given how long it took patient-centered medicine to catch on, participant-centered research may face a long road ahead. Warner Slack was publishing about “patient power” at least as far back as 1972 (in his chapter on “Patient Power: A Patient-Oriented Value System,” in Computer Diagnosis and Diagnostic Methods, edited by John A. Jacquez, 1978). More than forty years later, great strides have been made, yet “patient power” is still a work in progress.
Take the issue of patient access to their own medical data. People in the United States now enjoy a federally protected right to access their medical records. But it wasn’t always that way. Before any federal mandate, one test to evaluate hospitals for patient-centeredness was whether the medical record hung inside the examination room or outside, where it was accessible only to doctors and staff. In fact, it wasn’t until 2014 that patient access to their lab test results without physician authorization became the default practice.
Empowering participants in research is a work in progress. Right now research is governed based on rigid, role-based ideas about who is the investigator and who is the subject. The consequence too often is denying participants access to their own research data. One geneticist recently worried about the consequences:
“I fear that potential volunteers who are refused access to their genetic data will become less willing to donate them to science…. After all, if potential participants can obtain their genetic data from a growing number of commercial companies, they might turn their backs on traditional research studies altogether.” (Sarah Nelson, Geneticists Should Offer Data to Participants, 539 Nature, Nov. 1, 2016).
How big is this problem? Amid a celebration of the growing number of genomes sequenced at the Broad Institute, Dr. Madeleine Ball asked, “How many of these people had access to their own genome data?” The response: “Approximately zero.” (https://twitter.com/madprime/status/816758387262287872)