RARE Advocacy Summit 2023: Rebel Health author Susannah Fox on Patient-Led Innovation

Susannah Fox will be a keynote speaker at the 2023 RARE Advocacy Summit in San Diego, California, September 19-21.

by Sravanthi Meka

Susannah Fox, author of the soon-to-be-published Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, has had a front row seat at the intersection of healthcare and technology for the past two decades. She served as the Chief Technology Officer for the U.S. Department of Health and Human Services (HHS), where she led an open data and innovation lab during the Obama administration. Before that, she directed the health portfolio at the Pew Research Center’s Internet Project where she conducted fieldwork in online patient communities, focusing on those with rare and chronic conditions.

She used this fieldwork and the survey research she did at Pew as a basis for the book, using historic and modern examples in academic writings of how patients and caregivers connect through online communities and change the trajectory of science. Susannah praised the rare disease community for their unwillingness to surrender.

“My mentor, Tom Ferguson, MD, told me that the best way to see the future is to find people who, when confronted with a challenge, stop at nothing to solve it,” she said. “People who bend tools until they break and then make a new one of the broken pieces. People who rush out to the frontier and build communities, sharing what they know with anyone who needs help. He was describing people living with rare diseases, who have been early adopters of every new technology trend in health and health care. The courage and generosity of the rare disease community is the animating force of the patient-led revolution. They break the path so others can follow.”

That spirit of collaboration continued while she was at HHS, where entrepreneurship and innovation were encouraged to help improve the health and welfare of the nation using data and technology. She provided a few examples:

• Historically, HHS collected and created huge volumes of data that were inaccessible. Our Health Data Initiative made available troves of government data, from hospital utilization to prescription drug use, changing the default setting of data warehouses from closed to open.
• Prize competitions allowed citizens to contribute to solving high-priority health challenges, showing that anyone with a great idea can play a role in addressing these issues. This can-do spirit of openness continues to reverberate, echoing the rare disease community’s calls for openness and experimentation. We all go faster when we work together.

This open-access concept has far-reaching implications, both in the rare disease community, and in healthcare in general. Look no further than the COVID-19 pandemic to see how patients led the charge to identify Long COVID using their own symptoms, consumer-strength tools, and industrial-strength research. Instead of dismissing the concerns of the patients, scientists and government leaders embraced their efforts and worked with the Patient-Led Research Collaborative to amplify their work. One paper they published in Nature has been accessed almost a million times and is in the top 5% of research papers tracked by Altmetric. Most scientists could only dream about this type of recognition, and here it was — written by patients about their own disease.

Fox acknowledges that industry is taking note. “Smart organizations are going beyond patient engagement and instead partnering with patients and caregivers to create new products, services, research protocols, and treatments.” She said, “Leaders are starting to recognize that it is a competitive advantage to work closely with the people who are experiencing the problems they are trying to solve.”

Rebel Health is Fox’s way of giving back. “A rebel alliance of patients, survivors, and caregivers have generously shared their stories with me and now it’s my turn to pay it forward, helping everyone see how powerful they are,” she said.

Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care will be published in February 2024 by MIT Press.

Global Genes’ 12th Annual RARE Patient Advocacy Summit is one of the world’s largest gatherings of the rare disease community. The event is an opportunity for advocates to learn, network, and inspire each other as they interact with researchers, healthcare professionals, drug developers and other advocates during the three-day event that runs September 19 through 21 at the Sheraton San Diego Hotel & Marina on Harbor Island Drive in San Diego. RARE Advocacy Summit is part of Global Genes’ Week in RARE, and will be preceded by the RARE Health Equity Forum, September 18 and 19.

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