Examining how study teams manage different viewpoints and priorities in patient-centered outcomes research: Results of an embedded multiple case study.

INTRODUCTION: Limited evidence exists about which patient and stakeholder engagement practices support or hinder study teams as they negotiate different viewpoints in decisions about the design and conduct of patient-centered outcomes research. METHODS: We applied a multiple-embedded descriptive case study design for six studies funded by the Patient-Centered Outcomes Research Institute (PCORI). We interviewed 32 researchers and stakeholder partners, including patients, caregivers and clinicians, and reviewed documents related to each study (e.g., publications, and progress reports submitted to PCORI). FINDINGS: Overall, researchers reported that incorporating different viewpoints was a strength or opportunity to learn rather than something to be avoided or dreaded. Across cases, different viewpoints and priorities, often related to ethical or pragmatic considerations, emerged between researchers and stakeholders, between stakeholder groups (e.g., patients and clinicians) or within groups (e.g., amongst researchers). Examples of navigating different viewpoints arose across study phases. The length of time to resolve issues depended on how strongly people disagreed and the perceived importance or impact of decisions on the study. All cases used collaborative decision-making approaches, often described as consensus, throughout the study. Interviewees described consensus as using negotiation, compromise or working towards an agreeable decision. To encourage consensus, cases actively facilitated group discussions with an openness to diverse opinions, remained flexible and open to trying new things, referenced a ground rule or common goal and delegated decisions to partners or smaller workgroups. When viewpoints were not easily resolved, cases used different approaches to reach final decisions while maintaining relationships with partners, such as elevating decisions to leadership or agreeing to test out an approach. No one engagement structure (e.g., advisory group, coinvestigator) stood out as better able to manage different viewpoints. Teams adjusted engagement structures and behaviours to facilitate an overall culture of inclusion and respect. Partners acknowledged the intentional efforts of researchers to incorporate their perspectives, navigate challenges and communicate the value of partner input. CONCLUSION: By using collaborative decision-making in the early stages and throughout the study, researchers built trust with partners so that when decisions were difficult to resolve, partners still felt listened to and that their input mattered. PATIENT OR PUBLIC CONTRIBUTION: Members of the PCORI Patient Engagement Advisory Panel in 2019-2020 provided input into the design of the study, including the research questions and approaches to data collection and analysis.

Patient Acceptance of Nurse Practitioners and Physician Assistants in Rheumatology Care.

OBJECTIVE: To assess whether patients with autoimmune disease would accept advanced practice providers (APPs) as an option to fill the growing shortage of rheumatologists. METHODS: We administered a cross-sectional survey to 500 patients or parents of children who reported having been diagnosed with qualifying autoimmune conditions and who had seen their primary rheumatology providers in the past 6 months. Respondents self-reported whether their primary providers were rheumatologists or APPs. Our analysis compared the attitude and experience of the patients whose primary rheumatology providers were APPs with those of patients whose primary providers were rheumatologists. RESULTS: Of respondents, 36.8% reported having APPs as primary rheumatology providers. Patients of APPs were significantly more likely to arrive at their provider's office in 15 minutes or less (P < 0.01) and to be able to schedule routine and urgent appointments sooner (P = 0.02 and 0.05, respectively). There were no significant differences in overall patient experience of care between provider types. Most patients rated their providers highly, but those who saw rheumatologists rated their providers significantly higher (P < 0.01). Patients of APPs were significantly more likely than patients of rheumatologists to prefer to see APPs over rheumatologists (P < 0.01) and to recommend APPs (P < 0.01). CONCLUSION: APPs may improve access to care and, regardless of provider type, patients rated their overall experience of care similarly. Overall, patient attitudes toward APPs were positive regardless of provider type, although APP patients held more positive overall attitudes toward APPs than did rheumatologist patients.