Co-production of the quality of patient-centered outcomes research partnerships instrument for people with mental health conditions

Fortuna, Karen L.; Myers, Amanda; Brooks, Jessica; Collins-Pisano, Caroline; Marceau, Skyla; Pratt, Sarah I.; Lyons, Kathleen Doyle; Walker, R. M.; Thompson, Shavon; Greene, Kaycie; Pringle, Willie; Carter, Katina

doi:10.35680/2372-0247.1533

Cited by 9 publications

(4 citation statements)

References 28 publications

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“…The quality of PCOR was assessed using the Quality of Patient-Centered Outcomes Research Partnerships Instrument (QPCOR) [ 12 ]. The QPCOR contains the following domains: (1) purpose, goal, and population; (2) respect (respect community diversity and culture); (3) inclusion (activate community assets); (4) colearning (develop capacity); (5) become knowledgeable about the community; (6) self-determination; (7) shared decision-making (partner with the community); (8) perceived support (interact and establish relationships with the community); (9) flexibility; and (10) sustainability (commitment to long-term collaboration).…”

Section: Methodsmentioning

confidence: 99%

“…Despite the need for the integration of community engagement methodologies into the scientific inquiry, doctoral and master’s level competencies in the field of psychiatry commonly do not include dedicated training or coursework on community engagement methodologies [ 2 ]. Without appropriate training or research experience, attempts to facilitate community engagement in research are often ineffective and burdensome, leaving partners feeling disengaged [ 3 ].…”

Section: Introductionmentioning

confidence: 99%

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Examining the Feasibility, Acceptability, and Effectiveness of Remote Training on Community-Based Participatory Research: Single-Arm Pre-Post Pilot Study

Fortuna,

Bohm,

Lebby

et al. 2024

J Particip Med

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Background Over the past decade, a growing body of scientific evidence has demonstrated that community engagement in research leads to more relevant research, enhances the uptake of research findings, and improves clinical outcomes. Despite the increasing need for the integration of community engagement methodologies into the scientific inquiry, doctoral and master's level competencies in the field of psychiatry often lack dedicated training or coursework on community engagement methodologies. Objective A total of 13 service users, peer support specialists, caregivers of people with mental health challenges, and scientists (with specialties ranging from basic science to implementation science) aged 18 and older participated in remote training on community-based participatory research. Data were collected at baseline, 2 days, and 3 months. Methods A total of 13 service users, peer support specialists, caregivers of people with mental health challenges, and scientists (with specialties ranging from basic science to implementation science) aged 18 and older participated in remote training on community-based participatory research. Data were collected at baseline, 2 days, and 3 months. Results The pilot study demonstrated that a 3-month remote training on community-based participatory research (“Partnership Academy”) was deemed feasible and acceptable by service users, peer support specialists, caregivers of people with mental health challenges, and scientists. Improvements were found in research engagement and the quality of partnership. A marked increase in distrust in the medical system was also found. Groups submitted 4 grant applications and published 1 peer-reviewed journal at a 3-month follow-up. Conclusions This pre- and postpilot study demonstrated it is possible to train groups of service users, peer support specialists, caregivers of people with mental health challenges, and scientists in community-based participatory research. These findings provide preliminary evidence that a 3-month remote training on community-based participatory research (“Partnership Academy”) is feasible, acceptable, and potentially associated with improvements in research engagement as well as the quality of partnership and output, such as manuscripts and grant applications.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Examining the Feasibility, Acceptability, and Effectiveness of Remote Training on Community-Based Participatory Research: Single-Arm Pre-Post Pilot Study

Fortuna,

Bohm,

Lebby

et al. 2024

J Particip Med

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“…Following the completion of the Ideas Lab workshops, participants completed an online evaluation survey. Ten items from the Quality of Patient-Centered Outcomes Research Partnerships Instrument were adapted for use in evaluating engagement in planning sessions and Ideas Lab sessions [28]. These Likert items (1 = "not at all" to 3 = "very much") related to participants' understanding of the purpose of the workshops, nature and quality of their participation, comfort, ability to communicate with and relate to other participants, and overall impact of participation.…”

Section: Post Ideas Lab Surveymentioning

confidence: 99%

Mothers with Intellectual/Developmental Disabilities and Behavioral Health Conditions and Community Experts Provide Recommendations for Treatment/Services, Systems, and Research

Nicholson

Mazel

Faughnan

et al. 2023

IJERPH

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Mothers with intellectual and developmental disabilities (IDD) are vulnerable to perinatal complications and adverse outcomes. Their vulnerabilities may also be exacerbated by co-occurring behavioral health (BH) conditions. Their wellbeing may be compromised by a lack of tailored treatments or by treatments and services that are inaccessible, irrelevant, and/or ineffective. A five-session virtual Ideas Lab workshop series was implemented to bring together diverse community experts (n = 30), including mothers with IDD/BH, to discuss the experiences of mothers and set priorities for treatment/services, systems, and research. Participants completed background and evaluation surveys and brainstormed, grouped, and ranked items of importance, which fell into two broad categories: (1) cross-cutting themes drawn from lived experience with recommendations applicable to all substantive domains (i.e., accessibility, diversity, adverse experiences and trauma, and trust) and (2) substantive themes with specific recommendations for treatment/services and systems (i.e., services and supports, peer support, provider practices and training, and systems navigation/transformation). Research recommendations were generated in all discussions and emerged in relation to all themes, underscoring the importance of including mother-driven questions and priorities in research agendas and strengthening researcher training and skills to engage mothers with IDD/BH and other community members actively, and in meaningful ways.

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“…CPS are also increasingly involved in research-related activities (eg, recruitment, retention efforts, obtaining informed consent, collecting sensitive data, publishing findings in peer-reviewed journals [ 6 ]). For example, the Quality of Patient-Centered Outcomes Research Partnerships instrument was developed by researchers and CPS to offer quality improvement opportunities related to developing equitable research partnerships [ 7 ]. Moreover, community-engaged research that includes CPS in all stages of research may also lead to the dissemination of study results to a wider audience by incorporating CPS in conferences and publications as well as by using social media to showcase results in a more digestible manner for service users of the mental health system and other CPS [ 6 ].…”

Section: Introductionmentioning

confidence: 99%

Peer Support Specialists’ Perspectives of a Standard Online Research Ethics Training: Qualitative Study

Fortuna¹,

Marceau²,

Pratt³

et al. 2022

JMIR Form Res

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Background Certified peer support specialists (CPS) have a mental health condition and are trained and certified by their respective state to offer Medicaid reimbursable peer support services. CPS are increasingly involved as partners in research studies. However, most research ethics training in the protection of human subjects is designed for people who, unlike CPS, have had exposure to prior formal research training. Objective The aim of this study is to explore the perspectives of CPS in completing the Collaborative Institutional Training Initiative Social and Behavioral Responsible Conduct of Research online training. Methods A total of 5 CPS were recruited using a convenience sample framework through the parent study, a patient-centered outcomes research study that examined the comparative effectiveness of two chronic health disease management programs for people with serious mental illness. Participants independently completed the Collaborative Institutional Training Initiative Social and Behavioral Responsible Conduct of Research online training. All participants completed 15 online modules in approximately 7-9 hours and also filled out a self-report measure of executive functioning (the Adult Executive Functioning Inventory [ADEXI]). Qualitative data were collected from a 1-hour focus group and qualitative analysis was informed by the grounded theory approach. The codebook consisted of codes inductively derived from the data. Codes were independently assigned to text, grouped, and checked for themes. Thematic analysis was used to organize themes. Results Passing scores for each module ranged from 81%-89%, with an average of 85.4% and a median of 86%. The two themes that emerged from the focus group were the following: comprehension (barrier) and opportunity (facilitator). Participants had a mean score of 27.4 on the ADEXI. Conclusions The CPS perceived the research ethics online training as an opportunity to share their lived experience expertise to enhance current research efforts by nonpeer scientists. Although the CPS completed the online research ethics training, the findings indicate CPS experienced difficulty with comprehension of the research ethics online training materials. Adaptations may be needed to facilitate uptake of research ethics online training by CPS and create a workforce of CPS to offer their lived experience expertise alongside peer and nonpeer researchers.

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Co-production of the quality of patient-centered outcomes research partnerships instrument for people with mental health conditions

Cited by 9 publications

References 28 publications

Examining the Feasibility, Acceptability, and Effectiveness of Remote Training on Community-Based Participatory Research: Single-Arm Pre-Post Pilot Study

Examining the Feasibility, Acceptability, and Effectiveness of Remote Training on Community-Based Participatory Research: Single-Arm Pre-Post Pilot Study

Mothers with Intellectual/Developmental Disabilities and Behavioral Health Conditions and Community Experts Provide Recommendations for Treatment/Services, Systems, and Research

Peer Support Specialists’ Perspectives of a Standard Online Research Ethics Training: Qualitative Study

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