A Possible Turning Point In The Power Of The Patient Voice In Policy

Patient activists and supporters display the personal stories painted on the backs of their Walking ... [+] Gallery jackets by artist Regina Holliday, far right, at a Health Datapalooza reception in Washington, DC.

The patient activists and their supporters are facing away from the camera, the focus on the colorful images on the backs of their jackets. Each, hand-painted by patient activist Regina Holliday as part of her Walking Gallery, told a personal story of the wearer.

The gathering was at a reception hosted by AcademyHealth in conjunction with Health Datapalooza and at the same time as World Patient Safety Day. It symbolized events that over several days began to feel like a turning point in the power of the patient voice in health policy. Different strands of patient activists interacted in ways that hadn’t happened before, while the relationship with federal officials also felt significantly different.

“What we’re starting to see is a coming together,” said Dave deBronkart, an activist internationally renowned as “e-Patient Dave.” The “e” is from those long-ago days (the 1990s) when “e” stood for “electronic,” symbolizing proficiency in using the Internet. Today, deBronkart could also be “AI Dave” due to his leadership in insisting that #PatientsUseAI be a core part of discussions on artificial intelligence.

Here’s one example of the change: the patient-led group The Light Collective has earned policymaker and public attention by spotlighting online patient privacy issues and the need for the patient involvement in medical AI. By comparison, patient safety advocates at groups like Patients for Patient Safety (US) have traditionally focused on old-fashioned, analog issues, like a loved one killed by a diagnostic error or ineffective approach to infection control.

But here was a panel moderated by PFPS (US) co-founder Martin Hatlie and co-sponsored by AcademyHealth that featured three Light Collective leaders discussing the potential of AI to improve safety and the need to include patient input when evaluating algorithms. The discussion followed the premiere of a movie, The Pitch: Patient Safety’s Next Generation, funded by the Jewish Healthcare Foundation and focusing on a young entrepreneur, Reeetam Ganguli. The 23-year-old Ganguli is shown relentlessly pitching funders for his start-up that uses machine learning to detect danger signs for expectant mothers much earlier than humanly possible.

The three leaders’ own medical struggles – Andrea Downing and Valencia Robinson with cancer, Christine von Raesfeld with more than 40 diagnoses of mysterious conditions – emphasized that patient safety policies involving both AI and low-tech harm prevention strategies were personal.

As for a voice heard by government, two events stood out. First was a group of federal health officials who came to a panel organized and moderated by PFPS (US) members (myself and Beth Daley Ullem) – a recognition of patient turf, as it were. Washington’s Johns Hopkins University Bloomberg Center hosted the movie and PFPS (US) activities thanks to the effort of Hopkins professor Kathy McDonald, a pioneering researcher on patient-reported outcomes measures and diagnostic safety. This panel featured leaders from the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Centers for Medicare & Medicaid Services, the Office of the Inspector General of the Department of Health and Human Services and the Veterans Health Administration.

There was also a White House Healthcare Safety Forum, where a number of initiatives to strengthen safety were announced and representatives from PFPS (US) and The Light Collective were active participants. And perhaps most influential in the long run, an all-day meeting to advance Project PIVOT, a PFPS (US) initiative. The project, which has attracted private and government participants and funders, is an effort to make patient-reported measures and outcomes an integral part of the information collected by providers.

Still, this is power that remains fragile. The White House event was prompted by a presidential advisory panel’s recommendations, but the actual actions taken were carefully calibrated to avoid antagonizing the hospital industry. Though the White House venue sent an important symbolic message, so, too, did the absence of the president, vice president or HHS Secretary.

Exercising power engenders pushback. While patient groups often rely on volunteers and very modest funding, the American Hospital Association spent nearly $15 million on lobbying in 2024 alone, according to the website OpenSecrets. Separately, OpenSecrets reported 460 organizations lobbying on some aspect of AI in 2023.

Fledgling organizations like The Light Collective and PFPS (US) should reach out to veteran, policy-savvy groups such as the Public Citizen Health Research Group, the U.S. Public Interest Research Group network and the Patient, Consumer and Public Health Coalition. They all have spent years trying to amplify the patient voice, even if the focus has been somewhat different.

We may have reached a turning point, but much more sustained effort will be necessary to ensure there’s no turning back.