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WASHINGTON, D.C.—When she was diagnosed with rheumatoid arthritis (RA) at age 29, Eileen Davidson was working in Vancouver and had a 2-year-old son.
She soon learned that having the disease was just a part of the challenge, she said in a session at ACR Convergence. She became frustrated that people didn’t understand her diagnosis was serious and that it made life very difficult to navigate.
She began writing about her experience in a blog, which was not only an outlet but an outreach that connected her with hundreds of patients who said her writing has helped them with their illness. The blog also helped open doors and lead to participation in clinical research.
Ms. Eileen Davidson
When patients with rheumatic conditions get involved in patient-facing organizations and in clinical research planning, they can derive benefits while also improving the quality of life of the broader rheumatology community and advancing knowledge in the field, patient advocates and academic research coordinators said in the session.
Ms. Davidson, who has been a member of the Arthritis Research Canada Patient Advisory Board since 2018 and is a writer with the patient organization Creaky Joints, said she realizes that getting involved with academic centers in their research work may not be for the faint of heart.
“Patient partners—individuals living with arthritis—play a crucial role in ensuring that studies are relevant, meaningful and truly patient centered,” she said. “But for those without an academic background, getting involved may seem daunting.”
As her experience in this work has grown, she has come to understand its profound importance, she said.
“Without diverse patient partners, arthritis research risks focusing on academic questions that may not be relevant to real patient lives,” she said. This involvement can ensure that research findings are applicable to a wide audience, can contribute to equitable health outcomes and lead to tailored interventions unique to various groups. They can also help improve trust and engagement of patients with the medical and research community.
She said that having patients at the table can help lead to protocols that are more realistic for patients and boost the odds of a successful research project.
Do’s & Don’ts
At the same time, she said, there are pitfalls for researchers to bear in mind. They should be aware of power imbalances that can make patients feel “like [their] input is undervalued or overlooked compared to professionals.”
“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.
“What happened was we didn’t have enough overlap in the group to talk about certain issues,” she said. The researchers had prioritized diversity and there was an intentional lack of homogeneity, but it turned out that only one in the group had ever been pregnant, so this wasn’t a topic that could be meaningfully discussed.
Another issue, she has learned through experience, is the importance of “everyone being aligned to understanding what it means to come up with an answerable research question,” said Dr. Simard. For many, their experience with research came through recommendations, seeing study results and condensed information, such as brochures, making this effort a challenge.
“As open access continues to grow, perhaps this divide will be a little bit smaller,” she said.
Dr. Simard also stressed the importance of fostering a feeling of inclusion.
“Whether we are on a Zoom meeting all together, or all sitting around a table, it’s really important to keep in mind that everybody in that conversation feels valued, appreciated and respected,” said Dr. Simard.
Patient-Facing Groups
Ms. Christele Felix
Christele Felix, who is a patient with lupus and works with the lupus patient community LupusChat, said that patient-facing organizations can help patients gain experiences and insight.
“One thing we know really well is that life happens outside the exam room,” she said. “So it’s important for patients to have necessary tools to assist [us] when we’re out in the world.”
With these organizations, patients can feel the power of sharing—they hear from other patients, can share their experiences and learn how others deal with their disease in the context of their everyday lives.
Patient-facing organizations also help patients continue their education.
“One really important part of being forced to live with a lifelong condition is that we need to be educated on our conditions, on how the disease presents itself, so that we know what to look for, how our treatments work [and] how to get the best out of treatment plans, both specifically medications and other tools that enhance our quality of life,” she said.
An educated patient, she said, is a more active patient. It can also help prepare them for participation in clinical research, if they choose to do so, Ms. Felix said.
“I personally believe that it’s very important for patients to already have some clinical research awareness before being approached to participate in a particular study.”
Thomas Collins is a freelance medical writer based in Florida.
