Engaging people with lived experience in the grant review process

Rittenbach, Katherine; Horne, Candice G.; O’Riordan, Terence; Bichel, Allison; Mitchell, Nicholas; Parra, Adriana M. Fernandez; MacMaster, Frank P.

doi:10.1186/s12910-019-0436-0

Cited by 8 publications

(5 citation statements)

References 10 publications

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“…Fortunately, governments and organizations are increasingly recognizing the need for community driven interventions to be informed by the people that use them and for whom they directly affect (i.e., PWLE) [27][28][29]. Speci cally, scienti c research funders have acknowledged the importance of community-based participatory and PWLE-involved research, while researchers in both Canada and abroad have developed recommendations to support the meaningful inclusion of PWLE in research, and have established research cohorts and longstanding partnerships with the local community to ensure research aligns with the needs of communities [27,[30][31][32][33][34][35][36][37][38][39][40][41]. Engagement of PWLE has thus been progressively supported as a best practice approach when developing research priorities and related programs and policies.…”

Section: Introductionmentioning

confidence: 99%

WITHDRAWN: Examining Substance Use Services and Treatment Barriers and Needs among People with Lived Experience (PWLE) in Ontario, Canada.

Russell

Ali

Nafeh

et al. 2020

Preprint

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Introduction: Substance use is a complex issue, with rates of illicit and licit substances varying across Canada, and in Ontario, specifically. Services and treatment options for problematic substance use remain vital. Recent initiatives to increase the effectiveness of services have been implemented, however, a disconnect remains between the availability and accessibility of these programs and the real-world experiences and needs of people with lived experience (PWLE). There is a lack of knowledge regarding barriers to accessing services and service needs, yet PWLE are best suited to identify these factors. As such, this study critically examined these issues among a cohort of PWLE in Ontario, Canada. Methods: Semi-structured, one-on-one interviews with n=50 adult PWLE participants were conducted. Participants were recruited from substance use services across Ontario, based on ConnexOntario’s directory of all provincial addiction services, as well as by word-of-mouth. Questions focused on participants’ experiences and perspectives on substance use services. All data were transcribed and underwent an inductive thematic analysis based on key themes that emerged. Results: Beneficial services identified varied based on participant experiences and needs. A variety of barriers to service access were acknowledged, primarily related to system-level issues such as an overall lack of services, a lack of service capacity, and a severe lack of service coordination and gaps in service delivery. Recommendations revolved around the need for low-barrier, affordable, seamless services run by non-judgemental staff, including fellow PWLE. Conclusions: This study identified needs and barriers to substance use care among PWLE in Ontario, and highlighted important areas for policy change and program planning and implementation. Concrete recommendations include the development of a government-funded, low-barrier, comprehensive and integrated model of substance use services that includes PWLE as collaborators and program facilitators to ensure that services are as successful and meaningful as possible. Results from this study will work towards the improvement of substance use treatment and service provision across the province.

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Section: Introductionmentioning

confidence: 99%

WITHDRAWN: Examining Substance Use Services and Treatment Barriers and Needs among People with Lived Experience (PWLE) in Ontario, Canada.

Russell

Ali

Nafeh

et al. 2020

Preprint

View full text Add to dashboard Cite

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“…A recent example is the Lancet Psychiatry’s Commission on Psychoses in Global Context [ 87 ]; this effort intends to increase the inclusion of individuals with lived experience in working groups and editorial boards to ensure that outputs and activities involve co-production. Another related effort to enhance the representation of consumers with lived experience is the development of grant review panels [ 88 ] including at the National Institute of Mental Health (NIMH) [ 89 ].…”

Section: Discussionmentioning

confidence: 99%

Revisiting the policy ecology framework for implementation of evidence-based practices in mental health settings

Wortham,

Rodwin,

Purtle

et al. 2023

Implementation Sci

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Background Over the past three decades, policy actors and actions have been highly influential in supporting the implementation of evidence-based practices (EBPs) in mental health settings. An early examination of these actions resulted in the Policy Ecology Framework (PEF), which was originally developed as a tactical primer for state and local mental health regulators in the field of child mental health. However, the policy landscape for implementation has evolved significantly since the original PEF was published. An interrogation of the strategies originally proposed in the PEF is necessary to provide an updated menu of strategies to improve our understanding of the mechanisms of policy action and promote system improvement. Objectives This paper builds upon the original PEF to address changes in the policy landscape for the implementation of mental health EBPs between 2009 and 2022. We review the current state of policy strategies that support the implementation of EBPs in mental health care and outline key areas for policy-oriented implementation research. Our review identifies policy strategies at federal, state, agency, and organizational levels, and highlights developments in the social context in which EBPs are implemented. Furthermore, our review is organized around some key changes that occurred across each PEF domain that span organizational, agency, political, and social contexts along with subdomains within each area. Discussion We present an updated menu of policy strategies to support the implementation of EBPs in mental health settings. This updated menu of strategies considers the broad range of conceptual developments and changes in the policy landscape. These developments have occurred across the organizational, agency, political, and social contexts and are important for policymakers to consider in the context of supporting the implementation of EBPs. Summary The updated PEF expands and enhances the specification of policy levers currently available, and identifies policy targets that are underdeveloped (e.g., de-implementation and sustainment) but are becoming visible opportunities for policy to support system improvement. The updated PEF clarifies current policy efforts within the field of implementation science in health to conceptualize and better operationalize the role of policy in the implementation of EBPs.

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“…Since we completed this work, a peer-review group from Alberta have published their experience. 16 The Addiction and Mental Health Strategic Clinical Network (AMH-SCN) used a standard peer-review process to identify grants that were in the fundable range and then asked a panel of patients with lived experience of addiction and mental health problems to rank the applications. The steering committee took the ranking into account when making the final funding decisions, but it is not clear whether they followed the rank order exactly.…”

Section: Discussionmentioning

confidence: 99%

“…One of the biggest challenges facing organizations that wish to engage patient partners in research will be to manage expectations and to take the time to work with individual patients to find the role that suits them best. Everyone involved will need to support future patient partners who may feel “unnecessary pressure” 16 if they have concerns that they are unequal to the task in any way.…”

Section: Discussionmentioning

confidence: 99%

Involving Patient Partners in the KRESCENT Peer Review: Intent, Process, Challenges, and Opportunities

Fowler

Bell²,

Burns

et al. 2022

Can J Kidney Health Dis

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Purpose of review: The Kidney Research Scientist Core Education and National Training (KRESCENT) is a national Canadian training program for kidney scientists, funded by the Kidney Foundation of Canada (KFOC), the Canadian Institutes of Health Research (CIHR), and the Canadian Society of Nephrology (CSN). We describe our first year of incorporating patient partners into a scientific peer-review committee, the 2017 committee to select senior research trainees and early-career kidney researchers for funding and training, in the hope that it will be helpful to others who wish to integrate the perspective of people with lived experience into the peer-review process. Sources of information: Other peer-review committees, websites, journal articles, patient partners, Kidney Foundation of Canada Research Council, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) Patient Council, participants in the 2017 Kidney Foundation of Canada KRESCENT peer-review panel. Methods: We describe our motivation, rationale, guiding principles, plans, feedback, implementation, and response. Key findings: We disseminated a “call for patient partners” 8 weeks before the meeting, seeking patients or their care givers to partner with the KRESCENT peer-review panel; we defined these people with lived experience of kidney disease as patient partners. Eight patient partners came forward and all participated as reviewers. Patient partners first participated in a webinar to learn about the function, structure, and processes of a peer-review committee. They practiced reviewing plain language summaries and giving feedback. In a subsequent teleconference, they shared and discussed their reviews. Plain language summaries were scored, overall, on the same 0-5 quality scale used by scientific reviewers. Three patient reviewers participated in some or all of the 6-hour meeting, which was conducted as usual, for this panel, by teleconference (initially audio only; from 2020 onwards by videoconference). In the meeting, the 2 assigned scientific reviewers first gave their scores, followed by the patient reviewers giving their scores, and discussion (mostly scientific, and conducted in usual scientific language). Scientific reviewers then negotiated a consensus score based on their initial scores, the discussion, patient reviewers’ scores and statements, and the scientific officer’s notes. Patient reviewers, scientific reviewers, and the Kidney Foundation of Canada (KFOC) were generally positive about the process. The increased length of the meeting (estimated at 1 hour) was generally thought to be acceptable. Patient reviewers also provided feedback on the methods used to incorporate patients into the research under review. These comments were concrete, insightful, and helpful. The patients did not uniformly recommend that basic scientists involve patients in their work. We did not detect bias against preclinical science, work that did not involve patients, or rarer diseases. Some patients found participation inspiring and enlightening. All participants appreciated the idea of patient partners as community witnesses to a group process committed to fairness and supportiveness. We discussed assigning formal meaningful weight to patient reviewers’ assessments. Most, but not all, patients thought that the scientific reviewers were ultimately the best judges of the allocation of scarce research resources. Limitations: Patient participants tended to be Caucasian, middle class, and well educated. Because of the difficulties of travel for some people living with or supporting those living with kidney disease, our findings may not generalize fully to peer-review meetings that are conducted face to face. This is explicitly a supportive panel, committed to reviewing junior scientists with kindness as well as rigor; our findings may not generalize to panels conducted differently. We did not use formal qualitative methodology. Implications: Inclusion of patient partners as patient reviewers for the KRESCENT program peer-review panel was feasible, added value for scientific and patient reviewers, and for the funding stakeholders (CIHR, KFOC, and CSN). We were glad that we had taken this step and continue to refine the process with each successive competition.

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Engaging people with lived experience in the grant review process

Cited by 8 publications

References 10 publications

WITHDRAWN: Examining Substance Use Services and Treatment Barriers and Needs among People with Lived Experience (PWLE) in Ontario, Canada.

WITHDRAWN: Examining Substance Use Services and Treatment Barriers and Needs among People with Lived Experience (PWLE) in Ontario, Canada.

Revisiting the policy ecology framework for implementation of evidence-based practices in mental health settings

Involving Patient Partners in the KRESCENT Peer Review: Intent, Process, Challenges, and Opportunities

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