Participation in Clinical Research Registries: A Focus Group Study Examining Views From Patients With Arthritis and Other Chronic Illnesses

Abstract

Objective. Patient registries have contributed substantially to progress in clinical research in rheumatic diseases. However, not much is known about how to optimize the patient experience in such registries. We assessed patient views, motivations, and potential barriers towards participation in registry research to better understand how registries can be improved to maximize patient engagement. Methods. Focus groups were held with 23 patients (mean 6 SD age 59 6 13 years) from the Boston area and led by a bilingual moderator trained in focus group methodology, using a semistructured moderator guide. Three separate focus groups were conducted to thematic saturation: patients with rheumatoid arthritis (RA) who had registry experience, patients with any chronic illness, and Spanish-speaking patients with RA or osteoarthritis. Patients in the latter 2 groups had no prior registry experience. Focus groups were audiotaped and transcribed. Four researchers independently analyzed transcripts using open data coding to identify themes. A normative group process was used to consolidate and refine themes. Results. Seven major themes were identified, including personalization/convenience of data collection, trust and confidentiality, camaraderie, learning about yourself and your disease, altruism, material motivators, and capturing mental health and other elements of the lived experience. We observed distinct differences in the discussion content of the Spanish-speaking patients compared to the English-speaking patients. Conclusion. This study identified patient attitudes towards registry research among those with and without prior experience in a registry. The results provide insight into strategies for registry design to maximize patient engagement, which can lead to more robust registry data.

A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency

“…• Insurances that security measures protect confidentiality of personal health information are in place are important, as are reassurances that this will be done consistently and reliably. 0.95 [ 36 ], USA, not reported Focus groups, grounded theory approach Arthritis and other chronic conditions/hospital 23 Age, years, mean 59 (SD ±13), range 36–84 Sex, male 5 (21) Chronic Illness 10 (43.5) Privacy Trust Privacy • Confidentiality was noted as a concern generally for patients. Trust • Trust, distrust, and confidentiality were influential and a consideration in patients’ views towards research registry participation.…”

“…Granting access to a small number of named individuals was not seen as a solution to resolving privacy concerns, as these individuals themselves may not be trustworthy [44]. Any research undertaken using secondary data analysis must not undermine or New Zealand 2 [28,47] Northern Ireland 1 [26] United Kingdom 8 [27,30,31,34,41,43,44,48] United States of America 7 [21,24,[35][36][37][38]40] compromise an individual's trust in medical research [30]. The level of respondents' education influenced their view of trust, with a higher level of education being more trusting of their government and research institutions compared to those who finished their education earlier [16].…”

“…Studies indicated that use of health information exchanges and digital health platforms can improve care [25]. While these positives were noted, views on use of these technologies varied widely [36].…”

Clinical patient registry recruitment and retention: a survey of patients in two chronic disease registries

“…However, little is known about the patient perspective on registries. As a follow-up to a prior set of focus groups, [9] we surveyed two cohorts of patients who participate in chronic disease registries. There were important similarities across the cohorts regarding motivating factors, but also important differences regarding preferences for how to receive and answer questionnaires, frequency of questionnaires, and honorarium.…”

“…We have previously conducted several focus groups with patients involved in chronic disease registries or others uninvolved but with chronic diseases [9]. The focus groups uncovered a variety of issues for patient engagement in registries, including participant burden, methods for survey completion, and content area.…”