After 30-plus years working in Washington DC, it’s clear healthcare decision makers recognize that a patient’s story can add value to a discussion when data cannot.
While the value of data is not disputed, the art of patient storytelling is seldom discussed. I believe this is partly due to the desire that patients’ experiences be respected, not questioned, or confronted in the same manner policies are debated. There’s also a desire not to cherry-pick the patient’s words or put words in their mouth. They are experts in their knowledge of their disease, it’s treatment, and what it takes to manage it.
There is, however, a growing need to recognize the complexity of situations – FDA meetings, policy forums, CMS coverage decisions, legislative debates – where patients are being asked to tell their story. To shed light on this, it was my pleasure to work with BIO for a panel presentation on “The Art of Storytelling” at the BIO 2019 Patient and Health Advocacy Summit in Washington, DC.
Common to the discussion was a fundamental belief in the power of the personal story. For Freda C. Lewis-Hall, MD, DFAPA, Chief Patient Officer and EVP of Pfizer, embedded in a personal story is the ability to change someone’s life. She described a former professor in medical school who advised her to shoot for “equanimity under duress,” a trait she recognized within herself when her husband was diagnosed with cancer. According to Paul Hastings, CEO, Nkarta Therapeutics, the value comes in sharing a “connection” for patients to “feel normal.” Similarly, Dena Battle, Co-Founder and President, KCCURE, commented that patients can better deal with their own diagnosis and help others do the same by sharing personal stories.
Of the two, stories provide insights that cannot be captured scientifically. “Stories provide context,” was how Dr. Lewis-Hall said it. “We argue about time, how long, how much. A story can conceptualize the importance of time.” Battle echoed the value of defining time from the patient’s perspective – in her husband’s case it was 9-months of quality life with their family.
Of concern was how to remain authentic when critics often view patient stories as mouthpieces for industry. Hastings challenged patients to be “unapologetic” and “transparent about funding” at all times. Dr. Lewis-Hall spoke of a tempered, yet forthright approach: moderated authenticity. “You’ve got to work hard to relate, you’ve got to listen first.”
An important area of discussion was the representation of a single patient speaking for others with different backgrounds or experiences. A patient can be reflecting on their own personal experience, while others at the table back up their opinions with years of research or analysis. The inequity can be daunting to patients, in general, even more so to those who feel like outsiders. I asked the panelists how to overcome this gap. Hastings’ said to “simply sit in silence” if necessary. Dr. Lewis-Hall added, “Be yourself, don’t try to be who they are, be who you are.” Battle spoke for all of us when she reminded us of the best approach, “just speak from your heart.”
There’s much to learn about the art of patient storytelling for it to be routinely included in any policy discussion. Together with data and statistics, it can round out an otherwise abstract or distant belief about an illness or treatment. Under BIO’s leadership, it would be worthwhile to continue the discussion of how to be do this so that all within the healthcare sector find care that puts patients first.
By Dr. Gwen Mayes, Founder & Chief Concept Officer, GwenCo Health
Gwen Mayes, JD, MMSc is the Founder and Chief Concept Officer of GwenCo Health, a healthcare consulting business focused on helping stakeholders ensure the patient’s story is equally represented and valued as data in policy affairs. A cardio-thoracic physician assistant and lawyer by training, Gwen has led government affairs, advocacy, and reimbursement teams for over 30 years on a state and national level. She has lived a lifetime with hypertrophic cardiomyopathy. www.gwencohealth.com or email@example.com