Perspectives on neurological patient registries: a literature review and focus group study

Abstract

BackgroundPatient registries represent a well-established methodology for prospective data collection with a wide array of applications for clinical research and health care administration. An examination and synthesis of registry stakeholder perspectives has not been previously reported in the literature.MethodsTo inform the development of future neurological registries we examined stakeholder perspectives about such registries through a literature review followed by 3 focus groups comprised of a total of 15 neurological patients and 12 caregivers.Results(1) Literature review: We identified 6,435 abstracts after duplicates were removed. Of these, 410 articles underwent full text review with 24 deemed relevant to perspectives about neurological and non-neurological registries and were included in the final synthesis. From a patient perspective the literature supports altruism, responsible use of data and advancement of research, among others, as motivating factors for participating in a patient registry. Barriers to participation included concerns about privacy and participant burden (i.e. extra clinic visits and associated costs). (2) Focus groups: The focus groups identified factors that would encourage participation such as: having a clear purpose; low participant burden; and being well-managed among others.ConclusionsWe report the first examination and synthesis of stakeholder perspectives on registries broadly with a specific focus on neurological patient registries. The findings of the broad literature review were congruent with the neurological patient and caregiver focus groups. We report common themes across the literature and the focus groups performed. Stakeholder perspectives need to be considered when designing and operating patient registries. Emphasizing factors that promote participation and mitigating barriers may enhance patient recruitment.

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

“…Focus group participants also expressed differing views regarding the mode of data collection, with some patients preferring mailed surveys while others preferred to have data collection coincide with their medical appointments. These findings support prior research that highlights patient preferences and demands of study participation as perceived barriers to patient participation in research (17,19,20). Importantly, Robiner et al (21) found significant correlation between protocol adherence and perceived barriers such as missing work, frequency of appointments/procedures, number of appointments/procedures, and access to study location in 978…”

“…In a 2006 study among elderly patients with cancer, researchers found that endorsement and conversely discouragement from a patient's doctor was one of the most important influences on a patient's decision to enroll in a clinical trial (16). Similar views were expressed in a focus group among a Canadian population of patients with neurologic conditions (17). If a trusted provider presents a registry research opportunity to a patient and endorses it as both safe and of scientific value, the patient may be more inclined to join the registry, compared to when information about the registry is conveyed through other means.…”

“…Monetary payment, gift cards, and accommodations such as free parking during office visits are material motivators that patients were receptive to. As with prior research (13,17), some patients also expressed the value of nonmaterial motivators, such as the altruistic satisfaction derived from helping others and the opportunity to learn about their disease through the research process. These comments suggest that registry researchers may foster stronger engagement among patients by offering opportunities to learn about how their data are being interpreted compared to other research participants.…”

“…To our knowledge, only 1 focus group has previously been conducted to explore patient views regarding participation in registry research, and this group was in a Canadian population of patients with neurologic conditions (17). The objective of the present study was to understand how registries can be improved to maximize patient engagement and ensure that patient goals align with registry methods in a US population of patients with rheumatic and other chronic conditions.…”

Patient- or Participant-Generated Registries

“…92 Privacy concerns include the risk of data falling into the hands of employers and health insurance companies. 92 Patients with more severe conditions like ALS appeared to have less reluctance about sharing their medical information, which may reflect a sense of urgency for research to develop meaningful treatment options in these more severely affected patients.…”