Rédaction Africa Links 24 with Isabella Cueto
Published on 2024-02-05 09:30:09
Susannah Fox’s upcoming book, “Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care,” features a unique snapshot at the end of each chapter, distilling the information into easy-to-digest bullet points. This concept was inspired by “The Long Covid Survival Guide,” and it is a representation of the patient-led movements that Fox has been studying and writing about in her book. Her deep knowledge has been accumulated over decades of researching online patient communities and her professional experiences.
Fox’s work began around 20 years ago when she started tracking online patient communities and the technology at that time was very different. People used email and bulletin board services to create communities where they could connect with one another. Fox would ask permission from the community leaders to post surveys and links and then follow up with phone interviews. Her work was emotionally taxing, as she was deeply invested in understanding and sharing the experiences of patients.
Her interest in growing communities can be traced back to her early career when she worked at U.S. News and World Report and noticed the importance of people connecting with each other for information and support. She began to realize that patients with rare conditions who connected online were often the first to discuss important healthcare issues, such as genetic testing and data pooling, long before the rest of the healthcare community.
Fox states that there are no precise numbers for rare diseases, but they are more common than we might think. About 25 to 30 million people in the U.S. are thought to live with a rare condition, and she feels a sense of responsibility to document the stories that have been shared with her and to introduce patients to policymakers and healthcare executives.
Her book, “Rebel Health,” is unique because it shares stories of patient-led innovation, ingenuity, and the strength of community in solving unmet health needs. She highlights groups like the Diabetes Rebel Alliance who worked together to create positive change. She maintains a tone of optimism throughout the book, emphasizing that the revolution in healthcare is something that everyone should want to be a part of. She believes that technology brings good things to individuals and healthcare and that change, whether at the individual level or national level, requires careful implementation.
Fox highlights the potential for individuals and communities to create immediate change and the need for policy changes at the national level. She stresses that healthcare change needs to happen slowly and carefully, and the patient-led revolution has the ability to drive change from the ground up.
In “Rebel Health,” she also discusses historical examples of patient-led healthcare efforts, such as the sickle cell initiatives of the Black Panther Party, underscoring how individuals and communities have the power to drive meaningful change in the healthcare industry. Overall, her book provides a comprehensive understanding of the patient-led revolution and how everyone, whether in private industry or government, should leverage the wisdom and strength of patient communities to solve unmet health needs.
