Health care conferences should embrace patients as collaborators - STAT

Health care conferences like the North American Cystic Fibrosis Conference are as much professional events and critical evaluators of progress as they are times to connect with old friends and make new ones. Almost universally, they are missing one thing: patients.

Health care conferences without patients are like birthday parties without the birthday girl or graduation parties without the graduates.

It is our hope that one byproduct of the coronavirus pandemic will be an end to these exclusive events, and that they will be replaced with an inclusive and accessible conference landscape. The pandemic has opened the door to an efficient virtual world, allowing for an unprecedented level of accessibility. A lasting legacy of this crisis should be a reimagining of the incorporation and invitation of patients into the health care industry at large, and health care conferences in specific.

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We both live with cystic fibrosis. We were disappointed when the Cystic Fibrosis Foundation promoted registration for its annual medical meeting, the North American Cystic Fibrosis Conference, and didn’t include “patients and families” from the prompt “Who Should Attend?” It made no sense to us that the patients whose time and effort led to the research at the heart of the conference were not included in the “who.” The language doesn’t forbid us from attending — anyone can purchase registration after all — but it does ignore us as valued contributors.

It signals to us that the health industry continues to see patients as passive benefactors of modern medicine and not engaged participants in their own lives and care. Why aren’t patients invited to bask in the most up-to-date science and conversation about the diseases they live with at health care conferences, especially since it is known that when patients are included, information from these meetings flows more effectively back to the community?

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At this year’s North American Cystic Fibrosis Conference, people who have “personal connections” to cystic fibrosis are offered a watered-down, limited, complimentary track that offers significantly less content than has been offered in previous years. Why is the conference taking a step backward?

When pressed, the foundation has said to patients that there is a significant gap between the large number of patients who advocate for access and the small number who actually attend scientific sessions when granted access. Of course patients won’t come when they aren’t enthusiastically invited. Who wants to show up to a party they weren’t invited to? Organizers should encourage and empower patients to attend these sessions. Only then will the metrics on patient participation have meaningful value.

Let’s call the complimentary offering what it is: appeasement. It is a façade for a hapless attempt at patient engagement.

We write this not only as adults living with cystic fibrosis, but also as proof of the success people with this condition have achieved since the disease-causing gene was identified in 1989. We are both graduate students who hope to put our degrees to use inside the health care industry that has given us so much. Combined, we have nearly 60 years of living with cystic fibrosis and more than a decade and a half of studying the intersection of science and the health care industry. We are well able to understand the science that guides our treatment decisions, as are many of our cystic fibrosis colleagues.

People living with cystic fibrosis review grants, give feedback on clinical trial protocols, serve on data safety monitoring committees, and help construct clinical care guidelines, all activities where the Cystic Fibrosis Foundation has been a leader. Patients are valuable members of the health care industry, and it is time that they are incorporated into the health care conference conference culture. As patients participate more as clinical research partners, their attendance at conferences will only help them be more effective in these roles while also keeping up with how to best manage their conditions.

Patient engagement should not be appeasement. Instead, it should be seen as collaboration.

Exclusion of patients from conferences and collaboration isn’t limited to cystic fibrosis. It is part of a larger and outdated paternalistic culture that does not see patients as equals in the health care hierarchy. Across the spectrum of health care industry conferences, people living with scores of conditions have sought to be not only included but welcomed at these events. It is the very core of the disability movement: “Nothing about us without us.”

Given the Cystic Fibrosis Foundation’s history in recent years of embracing digital events, from patient-only conferences to livestreaming portions of the North American Cystic Fibrosis Conference, we believe there is an opportunity to engage the patient community at unprecedented levels with this year’s all-digital conference.

Providing free admission would be a step in the right direction. It would make us feel welcome at our own annual conference. The $125 general admission registration fee is low as conference registration fees go, but academics, clinicians, and industry attendees will not actually pay the fee, their institutions or employers will. Patients do not receive that kind of institutional support and may see that cost as prohibitive, especially in the middle of the global health crisis that has taken over our world.

For future conferences, we hope that patients are not only welcomed but encouraged to attend. The means embracing the virtual medium. Infection control in the cystic fibrosis community presents a unique challenge. The irony is not lost on us that virtual conferences are exactly what people with cystic fibrosis have long needed — gatherings with low chances of infection — but that emerged only when the entire world suddenly faced the threat of infectious disease. The age of coronavirus is driving solutions that allow people like us to experience the unique conference environment while avoiding cross-infection.

The medical community and health care industry should both see that accessibility, including patient accessibility, will be a positive legacy of the pandemic. It is time they fully embrace patient participation at conferences.

Gunnar Esiason, an M.B.A./M.P.H. candidate at Dartmouth College, lives with cystic fibrosis and serves on the board of directors at the Boomer Esiason Foundation, his family’s nonprofit organization. Emma D’Agostino, a Ph.D. candidate in biochemistry at Emory University, lives with cystic fibrosis and serves as a patient advocate for the Cystic Fibrosis Foundation and a consumer representative for the FDA.

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