Patients’ Voices Ring Out

“Avoid tokenism,” she added. “We can tell when we’re being the tokenistic patient at the table who’s just there to tick off a box. We want to engage truly and have an actual say and input in studies. We don’t want to feel like [we’re in] a revolving door.”

It’s important to compensate patients fairly for their time and expertise, which will encourage participation while also helping patients lead healthier lives, she said.

Researchers need to remember barriers common among patients, including their fluctuating health, frequent low energy levels, the emotional drain, and varying learning and communication styles that may mean that what works for one patient participating in the process may not work for another.

To help, researchers can be flexible with scheduling, allow for remote participation when necessary although patients often prefer being there in person, take thorough notes for meetings that patients can’t attend, and include more than one patient partner to reduce the burden on any single patient whose health condition can vary day by day.

“I do believe that experience over time has helped me become a stronger patient partner,” Ms. Davidson said. “Each time I’m invited to the table, I learn something, or I’m able to contribute something to the research process.”

Another Perspective

Ms. Julia Simard

Julia Simard, ScD, principal investigator and associate professor of epidemiology and population health at Stanford University, said patient involvement can be much more than giving input and interpreting results at the tail end of a research project. Helping develop research questions and participating in discussions along the way can make for a better study, she said.

“There’s a lot of work that happens long before we get to analyzing our data and partnering with patients at different stages can significantly improve our research,” she said.

In design, recruitment and data collection, “there are important conversations that can be happening,” she said.

For example, if a physician told a patient to take 200 mg of hydroxychloroquine on one day and 400 mg the next, a patient might report they’re non-adherent if a question in a research project says, “300 mg per day.” Patient involvement in design can help avoid such problems, Dr. Simard said.

She shared lessons from her experience. In one scenario, her team put together a diverse group of eight lupus patients and caregivers—a number chosen because it has been identified as an optimal number to generate discussion.