NEW ORLEANS—With artificial intelligence and other cutting-edge technologies dominating the news cycle, it’s no wonder physicians have explored how these groundbreaking innovations may apply to clinical medicine and research. At the 2023 Pediatric Rheumatology Symposium, in a presentation titled Using Technology to Engage Patients in Research, Jonathan Hausmann, MD, assistant professor of medicine Beth Israel Deaconess Medical Center, Boston, addressed this topic in detail, providing useful tips to researchers across many areas of rheumatology.
First, Dr. Hausmann summarized why patient engagement is important when conducting research. Research studies may involve invasive and/or time-consuming procedures that may dissuade some patients from participating unless they feel they are contributing to a greater good. Additionally, barriers to patient participation in studies, such as geography and socioeconomic status, often exist. Researchers need to mitigate these barriers to recruit diverse participant groups. The enrollment of heterogeneous populations that represent the full spectrum of patients with a given disease helps minimize bias in studies, making results more generalizable. Dr. Hausmann also explained that an aim of research is to ensure the knowledge produced from a study is relevant to patient needs and reflects the true patient experience. Patient engagement is critical to this aspect.
One example of excellent patient engagement in the research process can be seen in the COVID-19 Global Rheumatology Alliance. This group initially formed at the beginning of the pandemic and included rheumatologists and patients from around the world. At first through Twitter, and later through Slack and Zoom conversations, a steering committee was created and sought to cull data from individuals and researchers around the globe. Through the Alliance, patients have been intimately involved in the development of research questions, surveys, patient recruitment plans, data analysis, the drafting of research manuscripts and plain language summaries accessible to the public. The Alliance has generated a great number of important scientific findings that have been presented and published internationally, representing a new model for clinician-patient collaboration in research. representing a new model for clinician-patient collaboration in research.
Social Media & Beyond
Next, Dr. Hausmann discussed a research study he and colleagues conducted and had published in 2022 evaluating the feasibility and efficacy of online strategies in recruiting the parents of children with pediatric rheumatic diseases to enroll them in research trials. They found Facebook was the most successful means by which to recruit participants. Not only did Dr. Hausmann and colleagues see the benefits of using social media platforms to recruit participants, but they also demonstrate these participants had similar demographics to patients found in the legacy Childhood Arthritis and Rheumatology Research Alliance (CARRA) clinical registry.1