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 diseases, the Chan Zuckerberg Initiative is partnering with the most daring rebels of the patient-led movement. These pioneers are breaking new paths forward in clinical research, health policy, and data rights management.

But it’s not only people living with rare diseases whose needs are not being met by the current approach to health care delivery and innovation. Equally exciting is the broader coalition of people who are trying to improve their lives by optimizing diet or sleep routines based on self-tracking or building their own mobility or disease-management tools. They, too, are driving research forward, often outside the view of mainstream leaders because the investigations are focused on personal health journeys.

For example, 8 in 10 adults in the United States track some aspect of their health, according to a survey by Rock Health and Stanford University’s Center for Digital Health. These personal scientists are solving their own health mysteries, managing chronic conditions, or finding ways to achieve their goals using clinical-grade digital tools that are now available. How might we create a biomedical research intake valve for those insights and findings?

Patients know their bodies better than anyone and, with training and support, are able to accurately report any changes to their care teams, who can then respond and nip issues in the bud. In a study conducted at Memorial Sloan Kettering Cancer Center, patients being treated with routine chemotherapy who tracked their own symptoms during treatment both lived longer and felt better. Why are we not helping everyone learn how to track their symptoms?

Hardware innovation is another front in the patient-led revolution.

People living with disability ingeniously adapt home health equipment to meet their needs. By improving their own mobility, making a home safer, and creatively solving everyday problems, they and their care partners save themselves and the health care system money. We should invest in ways to lift up and publicize the best ideas related to home care, just as we celebrate advances in laboratory research.

Insulin-requiring diabetes requires constant vigilance and, for some people, that work is aided by continuous glucose monitors and insulin pumps. But medical device companies lock down the data generated by people’s own bodies, ignoring the possibility that patients and caregivers could contribute to innovation to improve their own lives. Happily, the diabetes rebel alliance, whose motto is #WeAreNotWaiting, found a way to not only get access to the data, but also build a do-it-yourself open-source artificial pancreas system. This, by the way, is just one example of how the diabetes community has risen up to demand—or invent—better tools.

Finally, since any conversation about biomedical innovation is now not complete without a reference to artificial intelligence, I will point to evidence that patients, survivors, and caregivers are essential partners in reducing bias on that front as well. For example, when creating an algorithm to measure the severity of osteoarthritis in knee X-rays, a team of academic and tech industry researchers fed it both clinical and patient-reported data. The result was a more accurate estimate of pain, particularly among underserved populations, whose testimony had been ignored or dismissed by human clinicians.

The patient-led revolutionaries are at the gate. Let’s let them in.

Image: “Stars” by Paul van de Velde on Flickr. Dandelions are hardy pioneers. Every seed is a tiny flower with potential.