The North American Primary Care Research Group’s Patient and Clinician Engagement Program (PaCE): Demystifying patient engagement through a dyad model

Sand, Jessica; Felzien, Maret; Haeme, Ray; Tapp, Hazel; Derkowski, Diane; Westfall, John M.

doi:10.1093/fampra/cmx027

Cited by 9 publications

(7 citation statements)

References 9 publications

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“…One example is the study protocol by Samalin et al 47 that will examine the efficacy of shared decision-making on treatment adherence of patients with bipolar disorder. To engage the community in research, Sand et al 48 propose a “dyad” model, whereby a patient and a primary care provider collaborate to learn about and engage in primary care, primary care research, grant review, proposal development and advocacy. In addition, a series of educational trainings were held during the study in conjunction with national primary care conferences, international webinars and local symposia.…”

Section: Resultsmentioning

confidence: 99%

A Systematic Review of Patient Engagement Experiences in Brain Disorders

Bertorello¹,

Brichetto²,

Folkvord³

et al. 2022

PROM

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Background Patient engagement is increasingly considered to be an important element in the treatment of brain disorders to optimise outcomes for patients, society, and healthcare systems. Nonetheless, scientific research examining methodologies to engage patients with brain diseases in Research and Innovation (R&I) is scarce. Aim To review existing scientific evidence regarding the engagement of patients with brain disorders in research and innovation. Methods Studies were retrieved from several bibliographic databases (publication date between January 2016 and April 2019) with pre-specified selection criteria. Results In total, 49 articles were identified as meeting the inclusion criteria and were reviewed systematically. Results showed that there is limited evidence available on the impact and (cost-) effectiveness of patient engagement in (brain) research and innovation. Most published studies are protocols, guidelines, and discussion articles for patient engagement in health research and innovation. Overall, there exists a general consensus to engage patients in every step of the research procedure. Relevant evidence identified includes principles of engagement, definitions of stakeholder types, key considerations for planning, conducting and disseminating engaged research, potential engagement activities, and examples of promising practices. Discussion Findings are inconclusive due to methodological differences. Comparison between studies was difficult due to differences in patients, form of engagements, and total duration of engagement of patients. Experiences of patient engagement mainly concern adherence to medical treatments or participation of “expert patients” in clinical trials, but very rarely the governance of R&I according to the dictates of Responsible Research and Innovation (RRI). More structuralized, well-conducted and comparable Randomized Controlled Trials (RCTs) are needed to be able to make evidence-based recommendations on how to increase effective patient engagement in research and innovation and assess the impact and (cost)-effectiveness.

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Section: Resultsmentioning

confidence: 99%

A Systematic Review of Patient Engagement Experiences in Brain Disorders

Bertorello¹,

Brichetto²,

Folkvord³

et al. 2022

PROM

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“…Additional engagement activities for the C.A.C include engagement as coinvestigators on grants 17 and registration for attendance to the North American Primary Care Research Group's (NAPCRG) Annual Conference. 18 The HPRN staff is dedicated to regular communication between C.A.C. meetings, as seen in Table 2.…”

Section: Cac Engagement In Research Projects Hprnmentioning

confidence: 99%

Strategies for Developing and Sustaining Patient and Community Advisory Groups: Lessons from the State Networks of Colorado Ambulatory Practices and Partners (SNOCAP) Consortium of Practice-Based Research Networks

et al. 2019

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Background: Patient and community engagement is essential to maintain the relevance of practicebased research. Empowered engagement requires going beyond the check box, with advisory groups involved in every aspect of a project. Here, 4 Colorado practice-based research networks (PBRNs) share their advisory group origins, as well as methods for continued engagement and the work that has resulted. Methods: PBRNs, like communities and practices, vary in form and function. In a 4-part case series, we describe commonalities and differences among advisory groups within the State Networks of Colorado Ambulatory Practices and Partners (SNOCAP), a consortium of PBRNs in Colorado. Three SNOCAP advisory groups are well established, while a fourth is under development. Results: Each case shares ways in which advisory groups have been structured within SNOCAP, including meeting frequency, compensation, and member activities to ensure the design, conduct, analysis, and dissemination of research are grounded in the needs of patients and communities. We share 6 lessons learned regarding membership, relationships, relevance, care and feeding, listening, and showing up. Conclusions: SNOCAP believes advisory groups are the backbone and guidepost of PBRN work. Patient advisors are an essential and invaluable complement to traditional research when engaged beyond "basic" participation. Best structures for advisory groups depend upon stakeholder needs.

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“…2 Patients' perspectives can produce innovative solutions that improve the health and well-being of the population. 7,10 PE has positive impacts on researchers and patient partners such as enhanced skills, and increased self-confidence, social support, learnings and satisfaction. 2,4,7 Many tools and frameworks have been proposed to assess PE in implementation research.…”

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confidence: 99%

Patient engagement in health implementation research: A logic model

Bisson

Aubrey‐Bassler

Chouinard

et al. 2023

Health Expectations

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IntroductionGrowing evidence supports patient engagement (PE) in health implementation research to improve the quality, relevance and uptake of research. However, more guidance is needed to plan and operationalize PE before and throughout the research process. The aim of the study was to develop a logic model illustrating the causal links between context, resources, activities, outcomes and impact of PE in an implementation research programme.MethodsThe Patient Engagement in Health Implementation Research Logic Model (hereafter the Logic Model) was developed using a descriptive qualitative design with a participatory approach, in the context of the PriCARE programme. This programme aims to implement and evaluate case management for individuals who frequently use healthcare services in primary care clinics across five Canadian provinces. Participant observation of team meetings was performed by all team members involved in the programme and in‐depth interviews were conducted by two external research assistants with team members (n = 22). A deductive thematic analysis using components of logic models as coding categories was conducted. Data were pooled in the first version of the Logic Model, which was refined in research team meetings with patient partners. The final version was validated by all team members.ResultsThe Logic Model highlights the importance of integrating PE into the project before its commencement, with appropriate support in terms of funding and time allocation. The governance structure and leadership of both principal investigators and patient partners have significant effects on PE activities and outcomes. As an empirical and standardized illustration that facilitates a shared understanding, the Logic Model provides guidance for maximizing the impact of patient partnership in various contexts for research, patients, providers and health care.ConclusionThe Logic Model will help academic researchers, decision makers and patient partners plan, operationalize, and assess PE in implementation research for optimal outcomes.Patient or Public ContributionPatient partners from the PriCARE research programme contributed to developing the research objectives and designing, developing and validating data collection tools, producing data, developing and validating the Logic Model and reviewing the manuscript.

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The North American Primary Care Research Group’s Patient and Clinician Engagement Program (PaCE): Demystifying patient engagement through a dyad model

Abstract: To date, 186 participants have completed the full-day, interactive PaCE training, and more than 250 people have participated in PaCE webinars and/or symposia. A 6-month follow-up sent to PaCE participants evaluates engagement activities following training.

Cited by 9 publications

References 9 publications

A Systematic Review of Patient Engagement Experiences in Brain Disorders

A Systematic Review of Patient Engagement Experiences in Brain Disorders

Strategies for Developing and Sustaining Patient and Community Advisory Groups: Lessons from the State Networks of Colorado Ambulatory Practices and Partners (SNOCAP) Consortium of Practice-Based Research Networks

Patient engagement in health implementation research: A logic model

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