Patients Helping Doctors: Unlocking the Information Researchers Need

For all the human and financial capital flowing through our healthcare system, there remains a formidable list of diseases for which there are no cures, or even meaningful treatment options. Each patient—each person, more accurately—has a unique medical history and biological materials, including tissue, blood and DNA, which are vital to understanding and managing disease. But too often that information remains locked away and inaccessible to researchers.

The Patients Helping Doctors panel at the Milken Institute Global Conference was a spirited discussion about the role (and power!) of individuals in helping to cure disease and limit its damage. Moderated by FasterCures’ Executive Director Margaret Anderson, it covered the democratization of research, the “unreasonable effectiveness” of data, and the shift to a learning healthcare system.

It’s not clear to most people what their role in medical research is, agreed the panelists, and this context has to be provided to them in their frame of reference to mitigate fear and motivate participation.

“We’re working towards demystifying the research process for people,” said Susan Love of the Dr. Susan Love Research Foundation. Her Army of Women democratizes clinical research, putting women in control and increasing trial participation through viral outreach. As much as the patient is assuming a more active role, she noted, it is still important that physicians help ensure that research stays relevant.

Jack Cochran, Executive Director of The Permanente Federation, said that every physician has three roles—healer, leader and partner. “The physician is no longer the main arbiter of information,” he said. Patients now have access to information from many sources, not the least of which is the internet and social networking communities. Given this, the fundamental goal (and role) of the doctor has shifted from how many patients he/she can see, to how many patients’ problems they can solve.

The panelists went on to discuss the fact that technology is advancing faster than medicine. As technology has improved and more and more tools (or “toys”) become available, research has been, in some ways, distracted by all of the things the “toys” can do, rather than remaining focused on how to utilize them in the context of solving the clinical problems that patients need answers to.

“What’s missing is meaning” said Jamie Heywood, Chairman and Co-Founder of Patients Like Me. “The individual defines the meaning.” As an engineer, he argued that it’s not about the art, but about the science, and that better information platforms are critical to accelerating progress towards medical solutions. “People are altruistic by nature” he noted, “but we need to give them what they need to contribute.”

When asked about the “wish list” for medical research moving forward, John Wilbanks of Creative Commons called for a federal data sharing policy that would allow taxpayer funded data to be shared in an open way so that innovation could be crowd-sourced and progress towards cures accelerated.

Ultimately, accountability, continuous learning, and partnership/communication with the individuals involved in the research will help to build the trust and momentum needed to speed the path to cures.