Development of the patient-oriented research curriculum in child health (PORCCH)

Macarthur, Colin; Walsh, Catharine M.; Buchanan, Francine; Karoly, Aliza; Pires, Linda; McCreath, Graham A.; Jones, Nicola L.

doi:10.1186/s40900-021-00276-z

Cited by 10 publications

(6 citation statements)

References 23 publications

(19 reference statements)

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“…These values and skills are not typically included in researcher training programs and the lack of competency in these areas is often described as a barrier to engaging with patient partners by researchers interested in POR [22][23][24]. There are stand-alone training programs for engaging patients as partners in research, such as the Patient Oriented Research Curriculum in Child Health (PORCCH) [25], the Kids Brain Health Network, Can-Child, McMaster's Continuing Education Family Engagement in Research (FER) Course [26], Partners in Research (PiR) [27], and the Patient and Community Engagement Research (PaCER) [28] training program. While programs tend to take the form of online modules or certificate courses, which are helpful resources to teach the basic principles of research and the concept of POR, few have been designed for patient partners and researchers to learn together in a safe environment where they experience firsthand each other's challenges.…”

Section: Introductionmentioning

confidence: 99%

Codesigning simulations and analyzing the process to ascertain principles of authentic and meaningful research engagement in childhood disability research

et al. 2022

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Background Including youth with disabilities and their families as partners in childhood disability research is imperative but can be challenging to do in an authentic and meaningful way. Simulation allows individuals to learn in a controlled environment and provides an opportunity to try new approaches. The objectives of the research study were to (1) codesign a suite of simulations and facilitation resources and understand how stakeholders engaged in the codesign process; and (2) describe the principles of authentic and meaningful research engagement as identified by stakeholders. Methods Interdisciplinary stakeholder groups, including youth with disabilities, parents, researchers, and trainees, codesigned simulation training videos by developing shared storylines about challenges with research engagement that were then performed and digitally recorded with standardized patient actors. Two forms of data were collected: (1) observations via field notes and video recordings were analyzed to understand the codesign process; and (2) interviews were analyzed to understand principles of authentic and meaningful engagement. Results Four simulation training videos were developed, and topics included: (1) forming a project team; (2) identifying project objectives and priorities; (3) reviewing results; and (4) navigating concerns about knowledge translation. Thirteen participants participated in the simulation codesign; nine of whom consented to be observed in the codesign process and seven who completed follow up interviews. We identified two themes about authentic and meaningful engagement in research: (1) whether the invitation to engage on a project was authentic and meaningful or was extended to ‘tick a box’; and (2) whether there were authentic and meaningful opportunities to contribute (e.g., valued contributions aligned with people’s lived experience, skills, and interests) or if they only served as a ‘rubber stamp’. Communication and expectations tied the ‘tick box’ and ‘rubber stamp’ themes together and underlie whether engagement was authentic and meaningful. Conclusions For research engagement to be authentic and meaningful, researchers and families need to set clear expectations, build rapport, have tangible supports, use clear communication, and build time and space to work together. Future work will explore the utility of the simulations and whether they improve knowledge and attitudes about authentic and meaningful engagement in research.

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Section: Introductionmentioning

confidence: 99%

Codesigning simulations and analyzing the process to ascertain principles of authentic and meaningful research engagement in childhood disability research

et al. 2022

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“…Initially, researchers did not plan for a PFAC, but proposed to engage AYA and parent representatives in more of a paid consultative role (e.g., both as consultants and as participants) in focus groups, interviews, usability/acceptability testing, and on the prototype development team. The plan was wellintentioned in attempting to include AYA and parent Co-presentations at conferences PFAC members were invited to co-present at several conferences [32][33][34] Brainstormed ideas, provided feedback on abstract submissions, scripted content, provided suggestions for the visuals of the presentation, co-presented live or via pre-recording, answered questions from the audience Website of resources for youth who were not eligible to participate in the study A website was developed to: Thank youth and families for their interest in the READYorNot ™…”

Section: Key Recommendations and Lessons Learnedmentioning

confidence: 99%

Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research

Nguyen,

Pozniak,

Strohm

et al. 2024

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Background While patient and family engagement in research has become a widespread practice, meaningful and authentic engagement remains a challenge. In the READYorNot™ Brain-Based Disabilities Study, we developed the MyREADY Transition™ Brain-Based Disabilities App to promote education, empowerment, and navigation for the transition from pediatric to adult care among youth with brain-based disabilities, aged 15–17 years old. Our research team created a Patient and Family Advisory Council (PFAC) to engage adolescents, young adults, and parent caregivers as partners throughout our multi-year and multi-stage project. Main body This commentary, initiated and co-authored by members of our PFAC, researchers, staff, and a trainee, describes how we corrected the course of our partnership in response to critical feedback from partners. We begin by highlighting an email testimonial from a young adult PFAC member, which constituted a “critical turning point,” that unveiled feelings of unclear expectations, lack of appreciation, and imbalanced relationships among PFAC members. As a team, we reflected on our partnership experiences and reviewed documentation of PFAC activities. This process allowed us to set three intentions to create a collective goal of authentic and meaningful engagement and to chart the course to get us there: (1) offering clarity and flexibility around participation; (2) valuing and acknowledging partners and their contributions; and (3) providing choice and leveraging individual interests and strengths. Our key recommendations include: (1) charting the course with a plan to guide our work; (2) learning the ropes by developing capacity for patient-oriented research; (3) all hands on deck by building a community of engagement; and (4) making course corrections and being prepared to weather the storms by remaining open to reflection, re-evaluation, and adjustment as necessary. Conclusions We share key recommendations and lessons learned from our experiences alongside examples from the literature to offer guidance for multi-stage research projects partnering with adolescents, young adults, and family partners. We hope that by sharing challenges and lessons learned, we can help advance patient and family engagement in research.

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“…The OSSU online training programs have had national uptake by SPOR SUPPORT Units across Canada and have also reached international stakeholders. For example, as of September 2022, the patient-oriented research curriculum in child health (PORCCH) has had more than 100,000 unique visitors to the site ( www.porcch.ca ) from more than 16 countries around the world, and the curriculum has been integrated into hospital family advisory committee onboarding programs as well as international research networks [ 12 ]. Taken together, the portfolio of online POR capacity building programs resulting from the WGTCD competition offers something for learners from all backgrounds, disciplines, and experience levels.…”

Section: Specific Ossu Capacity Development Initiativesmentioning

confidence: 99%

Training and capacity development in patient-oriented research: Ontario SPOR SUPPORT Unit (OSSU) initiatives

et al. 2023

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Background In Canada, the Canadian Institutes of Health Research launched the Strategy for Patient-Oriented Research (SPOR) in 2011. The strategy defines ‘patient-oriented research’ as a continuum of research that engages patients as partners, focuses on patient priorities, and leads to improved patient outcomes. The overarching term ‘patient’ is inclusive of individuals with personal experience of a health issue as well as informal caregivers including family and friends. The vision for the strategy is improved patient experiences and outcomes through the integration of patient-oriented research findings into practice, policy, and health system improvement. Building capacity in patient-oriented research among all relevant stakeholders, namely patients, practitioners, organizational leaders, policymakers, researchers, and research funders is a core element of the strategy. Main body The objective of this paper is to describe capacity building initiatives in patient-oriented research led by the Ontario SPOR SUPPORT Unit in Ontario, Canada over the period 2014–2020. Conclusion The Ontario SPOR SUPPORT Unit Working Group in Training and Capacity Development has led numerous capacity building initiatives: developed a Capacity Building Compendium (accessed greater than 45,000 times); hosted Masterclasses that have trained hundreds of stakeholders (patients, practitioners, organizational leaders, policymakers, researchers, and trainees) in the conduct and use of patient-oriented research; funded the development of online curricula on patient-oriented research that have reached thousands of stakeholders; developed a patient engagement resource center that has been accessed by tens of thousands of stakeholders; identified core competencies for research teams and research environments to ensure authentic and meaningful patient partnerships in health research; and shared these resources and learnings with stakeholders across Canada, North America, and internationally.

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Development of the patient-oriented research curriculum in child health (PORCCH)

Cited by 10 publications

References 23 publications

Codesigning simulations and analyzing the process to ascertain principles of authentic and meaningful research engagement in childhood disability research

Codesigning simulations and analyzing the process to ascertain principles of authentic and meaningful research engagement in childhood disability research

Navigating meaningful engagement: lessons from partnering with youth and families in brain-based disability research

Training and capacity development in patient-oriented research: Ontario SPOR SUPPORT Unit (OSSU) initiatives

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