Wired: Tech-Based Strategies for Engaging Patients in Research

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.

Diversity

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

In addition to commonly used social networks, patients connect with one another in other online groups. Example: PatientsLikeMe was conceived in 1998, when Stephen Heywood was diagnosed with amyotrophic lateral sclerosis (ALS) at age 29. His brothers, Jamie and Ben, wanted to learn more about the condition to help Stephen. In effect, they became citizen scientists who sought to aggregate the real-world experiences of patients with the disease from across the world. Since its 2005 launch, PatientsLikeMe has connected people living with ALS and expanded to include other conditions and is now among the world’s largest patient community and digital health management sites.

This platform and others allow patients to share information, learn how to manage their condition more effectively, gain insights into disease and symptom management and discover tools for self-management of disease to improve quality of life. Additionally, the PatientsLikeMe portal includes approximately 36,000 patients who self-identify as having lupus, and studies have been conducted to learn from the self-reported patient experience and add to the rheumatology literature on lupus and other rheumatic diseases.²  

Dr. Hausmann noted that research studies may involve invasive &/or time-consuming procedures that can dissuade some patients from participating unless they feel they are contributing to a greater good.

Data Collection

In the next portion of the talk, Dr. Hausmann discussed several technology-driven projects that he has worked on in recent years.

One such project is Feverprints, which seeks to better understand the association of fever patterns with various conditions and identify ranges of normal and febrile temperatures across individuals. smartphone app that asks individuals to measure and record their temperature with a thermometer, and then input the data along with responses to surveys about their health. In collecting more than 5,000 temperature readings, Dr. Hausmann and colleagues were able to show that crowd-sourced data on average normal and febrile temperatures were similar to those seen in studies performed under controlled conditions.³

From this experience, Dr. Hausmann explained that he learned how passive—rather than active—data gathering can be a valuable research method. The team also realized that working with established research platforms and having internal software development can be an advantage to performing high quality research studies.

Dr. Hausmann also discussed the vRheum app, which is designed to capture symptoms and patient-reported outcome measures for pediatric patients and their parents. A study is currently underway to evaluate how this app is being used by patients and their families. In the future, Dr. Hausmann hopes to provide data from the app to rheumatologists that may improve care by measuring medication adherence and integrating its data collection with that being done via the CARRA registry.  

In Sum

Concluding his talk, Dr. Hausmann summarized the benefits of using technology for patient engagement, such as the ability to provide patients with real-time feedback about their health, assistance with self-monitoring and self-management of disease, improving care between office visits and the future use of artificial intelligence to process data, identify patterns and alert physicians and patients of developing issues.

Challenges will arise with the use of such technologies, including ensuring patient privacy, upholding informed consent, preventing a deluge of hard-to-interpret data and the concern of disease hypervigilance (i.e., the constant monitoring of disease that may make it hard for patients to focus on anything else). Despite these challenges, Dr. Hausmann made it clear that, with the integration of technology into the patient experience, the future is bright for improving research and clinical care in rheumatology.

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Jason Liebowitz, MD, completed his fellowship in rheumatology at Johns Hopkins University, Baltimore, where he also earned his medical degree. He is currently in practice with Skylands Medical Group, N.J.

References

1. Hausmann JS, Vizcaino-Riveros J, Marin AC, et al. Feasibility and efficacy of online strategies to recruit parents of children with rheumatic diseases for research. ACR Open Rheumatol. 2022 May;4(5):410–416.
2. Nyman E, Vaughan T, Desta B, et al. Characteristics and symptom severity of patients reporting systemic lupus erythematosus in the Patientslikeme online health community: A retrospective observational study. Rheumatol Ther. 2020 Mar;7(1):201–213.
3. Hausmann JS, Berna R, Gujral N, et al. Using smartphone crowdsourcing to redefine normal and febrile temperatures in adults: Results from the Feverprints study. J Gen Intern Med. 2018 Dec;33(12):2046–2047.