Ensuring Education for Stakeholders of Personalized Medicine

“We have to rethink how we practice medicine because there’s a lot at stake,” was how Ralph Snyderman, MD, chancellor emeritus of Duke University, opened up a panel discussion at the PMC/BIO Solutions Summit held October 14, 2015, in Washington, DC. The panel, Education Regarding the Use of Personalized Medicine Throughout the Health Care Continuum, was set up to discuss widespread and appropriate education of personalized medicine (PM) among payers, providers, patients, and families.

Snyderman was joined by Wendy K. D. Selig, founder and CEO of WSCollaborative; Jane Binge, EdD, RN, senior research officer, Sutter Health; and Jeffry Ross, MD, medical director, Foundation Medicine.

“We have far from fulfilled the original goals of PM,” Snyderman continued, emphasizing the need for additional patient involvement as well as that of their families. “The whole field of PM is about using disruptive technologies that renew our capabilities. Disruptive technology can be innovative when used to solve a problem,” he said, because together they can develop a new mode to practice medicine. A physician, in collaboration with the patient, could change the trajectory of disease using the PM approach, but it would require a novel approach to clinical practice, Snyderman explained.

Ross, who is chair of pathology at Albany Medical College, said that they are already bringing forth the change by “training our second year medical students and residents on molecular pathology so they are aware of the [monumental] changes in the field and can keep up with the direction in which the clinical field is rapidly moving.” Ross said that PM is exciting to him personally because he believes PM can provide patients much better treatment outcomes.

“We need to educate payers on new options and therapies and the value they bring to the patient and his outcomes,” Ross continued. “Payers need to be well aware of our strategy for off-label and off-target clinical data and we need to come back to the payers and inform them on any positive outcomes. But, most importantly, we need this to be the national approach,” Ross emphasized.

Selig said that they have had different experiences in the patient advocacy space, “but when we make strides in 1 disease area, it can also be applied to other therapeutic areas.” While several groups and organizations are on the frontline for educating both patients and providers, “the patient community is hungry for information to understand their disease, their available options, and ways to fight their condition. This provides a huge opportunity to decide where we want to go. The industry needs to tap the resources these patient organizations provide,” said Selig.

Selig explained that most cancer patients are treated in the community and that’s where the treatment gap comes in, because while awareness on medical information is much better in academic institutions, community oncologists lag a bit on that front. “We need to figure out ways to communicate and collaborate better to share the limited data that is available.” Another aspect that Selig raised was about data ownership, saying that is always a major concern for patients.

Snyderman pointed out the need to develop a core curriculum to understand what providers of care need to know to move the field of PM forward. “If we identify the constituencies that can play a major role in telling the story of PM,” everyone would benefit.

According to Ross, payer education can be challenging. “We are currently in a chaotic phase where some [payers] are on board some are planning to and some may never be. Some bigger payers are asking for more than just anecdotal data to be submitted—they want clinical trial information to help them understand these tests better and help them determine coverage.”