Patients are Driving Innovation and Becoming Research Partners

The intent behind Medicine X (Med X) at Stanford is to act as a catalyst for new ideas regarding the future of health care. Traditionally patients have unfortunately been left out of many facets of an industry that has a direct impact on their quality of life. The director of Med X, Larry Chu MD, desires to create a culture of health where everyone’s experience is respected. By engaging with patients, it’s possible to create an innovation that meets the needs of all parties, such as patients and caregivers, not just hospitals or doctors. Furthermore, medical research has too often left patient’s opinions or insights by the wayside. Conferences such as Med X are beginning to change that.

An exciting example of how Med X is bringing all parties together and collaborate was the addition of a new “lab simulation.” Patients, providers, and health care researchers were invited to watch a physician interact with a “standard patient” (actor or actress playing the role of a patient). After the patient encounter was over, the group had a chance to dissect elements of the interactions that went well or detracted from the experience. When the brainstorming session was over, one of the Med X e-patients was invited to take on the role of the physician and continue the assessment of the “standard patient.” Again the interactions were dissected and analyzed as a group. The end result was a sense of empathy and understanding for all parties involved. It gave everyone the chance to discuss different health care roles from an alternate perspective.

One of the most engaging e-patient speakers at Med X was Dana Lewis. The theme of her talk, “we are not waiting,” describes her and other patients’ frustration with the glacial pace of medical technology development. As a Type 1 diabetic, Dana has to continuously monitor her glucose levels in order to ensure her body is functioning normally. Unfortunately, up until a few years ago, she lived with the daily reality that there was a possibility she could wake up paralyzed, unable to move, or call for help while living alone. The alarm on her continuous glucose monitor was not loud enough to wake her up in the event of an emergency. After unsuccessfully petitioning the manufacturer to improve the device, she took matters into her own hands. Dana was able to successfully “hack” her own pump using readily available hardware and simple coding to build additional functionality on top of her device to better meet her needs. Dana is an great example of a patient who is taking matters into her own hands and driving health care research.

During my time on the mPOWEr team, I have had the unique opportunity to engage with two patient advisors who have contributed a great deal of invaluable expertise. Many times their opinions and insights have directly contributed to the direction of mPOWEr development. Groups such as PCORI and BMJ are also encouraging or even requiring patient engagement at all levels of the research process now. This is an exciting new development in the world of health care research, which I feel can only add immense value. It also goes to show, if you give patients the opportunity to participate, they’ll be enthusiastic research partners.