Understanding the Influence and Impact of Stakeholder Engagement in Patient-centered Outcomes Research: a Qualitative Study.

BACKGROUND: Engaging patients and other stakeholders as partners in research offers promise in improving the relevance and usefulness of research findings. OBJECTIVE: To explore the influence and impact of patient and other stakeholder engagement on the planning and conduct of comparative effectiveness research studies. DESIGN: Qualitative study with virtual, hour-long semi-structured interviews. PARTICIPANTS: Fifty-eight researchers and fifty-one partners from a diverse purposeful sample of fifty-eight studies funded by the Patient-Centered Outcomes Research Institute (PCORI). APPROACH: Content and thematic analysis of interview data. KEY RESULTS: Described as an integral, long-term part of the research process, engagement influenced all aspects of the design and execution of studies. Partner influence was also dynamic and iterative, taking different forms over the course of the study. Across studies, we identified 387 discrete examples of influence and classified each as one of five types of influence, derived inductively from the interview data: co-producing, redirecting, refining, confirming, and limited. Most projects exhibited multiple types of influence, with 50 researchers and 41 partners reporting two or more types of influence within a project. Of the 387 examples of stakeholder influence, 306 had at least one reported impact on the study. Such impacts included changes to reflect the needs and preferences of patients or clinicians, as well as impacts on study feasibility, study quality, engagement scope or quality, and study relevance. Both researchers and partners identified multiple types of impact within projects, with 42 researchers and 38 partners reporting two or more types within a project. Because of these observable impacts, researchers and partners described engagement as worthwhile. CONCLUSIONS: Findings provide insights for funders and institutions supporting engagement, measurement efforts, and clinical researchers aiming to conduct engaged research and observe similar influences and impacts in their own studies.

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.

What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings.

BACKGROUND: US research organizations increasingly are supporting patient and stakeholder engagement in health research with a goal of producing more useful, relevant and patient-centered evidence better aligned with real-world clinical needs. The Patient-Centered Outcomes Research Institute (PCORI) engages patients, family caregivers and other health-care stakeholders, including clinicians, payers and policymakers, as active partners in prioritizing, designing, conducting and disseminating research as a key strategy to produce useful evidence for health-care decision making. OBJECTIVE: To inform effective engagement practices and policies, we sought to understand what motivates patients and caregivers to engage as partners on PCORI-funded research projects and how such engagement changed their lives. METHODS: We conducted thematic analysis of open-ended survey responses from 255 patients, family caregivers and individuals from advocacy and community-based organizations who engaged as partners on 139 PCORI-funded research projects focusing on a range of health conditions. RESULTS: Partners' motivations for engaging in research were oriented primarily towards benefiting others, including a desire to improve patients' lives and to support effective health-care interventions. In addition to feeling they made a positive difference, many partners reported direct benefits from engagement, such as new relationships and improved health habits. DISCUSSION AND CONCLUSIONS: By identifying patient and caregiver motivations for engaging in research partnerships and what they get out of the experience, our study may help research teams and organizations attract partners and foster more satisfying and sustainable partnerships. Our findings also add to evidence that engagement benefits the people involved as partners, strengthening the case for more widespread engagement.

Evaluating Art Therapy to Heal the Effects of Trauma Among Refugee Youth: The Burma Art Therapy Program Evaluation.

BACKGROUND: Art therapy uses the creative process to encourage personal growth and alleviate symptoms of mental illness. The Art Therapy Institute provides programs for refugee adolescents from Burma to decrease their trauma-related symptoms. This article describes and discusses the methods and findings from an evaluation of this program. The challenges of assessing art therapy with this population and assessment tool gaps are explored and suggestions for future evaluations discussed. METHOD: Four validated clinical assessment tools were administered to 30 participants at baseline and follow-up to measure symptoms of anxiety, depression, and behavioral problems. Focus group discussions with clinicians were used to assess the evaluation. RESULTS: Nearly all participants had experienced one or more traumatic events. At baseline, results showed a higher prevalence of depression than national rates among adolescents. Follow-up results showed improvements in anxiety and self-concept. Qualitative findings suggest that specific benefits of art therapy were not adequately captured with the tools used. DISCUSSION: This evaluation showed some effects of art therapy; however, symptom-focused assessment tools are not adequate to capture clients' growth resulting from the traumatic experience and this unique intervention. Future evaluations will benefit by using an art-based assessment and measuring posttraumatic growth.