In one of the opening talks of Medicine X (Med X) at Stanford, Eric Topol MD director of the Scripps Translational Science Institute, spoke about the need for patients to own their data. In order for precision health to be effective, patients must at least have access to their data in order for it to be actionable. One of the current problems that must be overcome is the fact 49 out of 50 U.S. states recognize health care systems as the owners of the data, not the patients. Eric argues that patient ownership of their health data is a civil right. Currently barriers to entry are falling. For example in Arizona patients may schedule and receive their own lab tests without a physician’s order. In the future, these lab tests will be conducted at home using mobile testing devices. Ultimately, Dr. Topol argues this will result in the “democratization of medicine.” Where treatment and guidance are provided by doctors to patients but with greater partnership with patients.
A great example of this democratization is action is the work currently being conducted by Matt Might PhD, Associate Professor of Computer Science at the University of Utah. Dr. Might is acting as an advisor to the Undiagnosed Diseases Network because of his work identifying his son’s extremely rare disease, which is an N-Glycanase deficiency. At the time of diagnosis, the physicians handling Matt’s son’s care informed Matt his son was the first person identified with the condition. Matt worked tirelessly to map his son’s genome and apply his computer science skills to improve the health of his son. Working with health care researchers, physicians, and with online support communities, Dr. Might has found 39 more patients with an N-Glycanase deficiency worldwide. By getting the information he needed and engaging with others, Matt is fueling a paradigm shift in how precision health care will be conducted in the future.
At the end of Med X, Nick Dawson, Larry Chu MD, and Claudia Williams announced the result of the Precision Health Initiative’s Challenge. During the conference, members of the initiative’s team interviewed conference attendees about their ideas regarding how precision health can be a collaborative endeavor and includes the patient voice. Opinions were also solicited from members of the online Med X community with a survey. The result is a set of design principles that creates a dynamic and inclusive governance structure. The goal is to build trust, accountability, respect, and reciprocity through meaningful engagement. You can find a breakdown of the design principles in more detail here. It is Med X’s hope that these principles will be adopted by the precision health innovation community. If successful, patients will have a greater role in how research conducted and ultimately their precision health care is delivered.