Most stakeholders in biomedical innovation – scientists, clinicians, patients, caregivers, funders, regulators – recognize each other as allies in the fight against disease. But they often lack shared principles and practices to guide the work they do together. For example, a research organization may say they value patient input, but they do not recognize their […]
research issues
Wow! How? Peer Support for Queer Youth
Today’s “wow” is unfortunately a troubling statistic: 49% of LGBTQ+ young people in the U.S. experience depressive symptoms, according to a survey conducted by Hopelab and Common Sense Media, compared with 24% of their straight and cisgender peers. But many Queer youth are meeting the challenge by accessing online therapy to a greater degree (44%, […]
Books I read while writing Rebel Health
While writing my book, Rebel Health, I dove into the history of innovation and of the patient-led scientific revolution. I read the daring adventures of caregivers, survivors, and patients who pushed the edges of what is possible in medicine. I learned about clinicians’ and researchers’ perspectives on the changes happening in health care. And I […]
Transforming research participation
Below is a letter I wrote in response to Tania Simoncelli’s article, “From Bedside to Bench and Back,” (Issues in Science and Technology, Summer 2023). Read all the responses here. Biomedical research has blind spots that can be reduced, as Tania Simoncelli writes, by “centering the largest stakeholders in medicine—the patients.” By focusing on rare […]
A survey about clinical trial support groups
I love talking about peer-to-peer health care, noodling over survey research questions, and meeting new people. Thanks to an introduction from Craig Lipset, I recently got to do all three. Denell Lewis is a student in the final year of her Masters of Regulatory Affairs/ Masters in Law program at the University of Pennsylvania. She […]
The Promise of Patient-Led Research Integration
The Council of Medical Specialty Societies (CMSS) and Patient-Led Research Collaborative (PLRC) have developed a collaborative research model for use by patients and patient organizations, funders, research institutions and other traditional biomedical research teams. The project was funded by a grant from the Patient-Centered Outcomes Research Institute (PCORI). The model is represented by a set […]
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