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

Abstract Background The Canadian Institutes for Health Research launched a national ‘Strategy for Patient-Oriented Research’ (SPOR) in 2011. Patient-oriented research is defined as a continuum of research that engages patients as partners, focuses on patient-identified priorities, and improves patient outcomes. Capacity development is a core element of SPOR. Barriers to patient-oriented research include unfamiliarity with the research process for patients and families and unfamiliarity with the methods of patient and family engagement for researchers. Methods The aim of the Patient-Oriented Research Curriculum in Child Health (PORCCH) is to build capacity in patient-oriented research in child health among patients and families, researchers, healthcare professionals, decision-makers, and trainees through a curriculum delivered via a series of interactive online modules (e-learning). A multi-disciplinary, multi-stakeholder steering committee, which included patients and families, guided the development of the curriculum and provided feedback on individual modules. The content, design, and development of each module were co-led by a parent and researcher in an equal partnership. Results PORCCH consists of a series of five modules. All modules are interactive and include video vignettes and knowledge comprehension questions. Access to the modules is free and each module takes approximately 30 min to complete. The five modules are: Research 101 (an Introduction to Patient-Oriented Research, parts 1 and 2), Patient Engagement 101 (an Introduction to Patient Engagement in Child Health Research, parts 1 and 2), and Research Ethics 101. Conclusions PORCCH was developed specifically to overcome recognized barriers to the engagement of patients and families in child health research. The aim of the curriculum is to build capacity in patient-oriented research in child health. The goal is for PORCCH to be a useful resource for all stakeholders involved in patient-oriented research: patients and families, researchers, healthcare professionals, decision-makers, and trainees.

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Partnering with parents to advance child health research

Healthcare Management Forum ◽

10.1177/0840470417744568 ◽

2018 ◽

Vol 31 (2) ◽

pp. 45-50 ◽

Cited By ~ 7

Author(s):

Janet A. Curran ◽

Andrea Bishop ◽

Jill Chorney ◽

Lauren MacEachern ◽

Rebecca Mackay

Keyword(s):

Child Health ◽

Patient Engagement ◽

Health Research ◽

Research Process ◽

Lessons Learned ◽

Research Organizations ◽

Dissemination Of Research ◽

Research Findings ◽

Patient Engagement In Research ◽

Child Health Research

Although patient engagement in research is widely touted as an important foundation for improving the relevance and sustainability of research findings, there is little consensus on how to do it in practice. This article describes our research team’s experiences working with and engaging parents throughout the entire research process to reach full partnership in the identification, management, and dissemination of research. Our report of these experiences includes lessons learned along the way regarding how healthcare and research organizations can better support researchers and patients to achieve successful partnerships.

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An Online Survey to Assess Parents’ Preferences for Learning About Child Health Research

10.21203/rs.3.rs-92280/v1 ◽

2020 ◽

Author(s):

Lisa Knisley ◽

Anne Le ◽

Shannon D Scott

Keyword(s):

Child Health ◽

Health Research ◽

Online Survey ◽

Research Process ◽

Stressful Situation ◽

Cross Sectional Survey ◽

Cross Sectional ◽

Child Health Research ◽

To Receive ◽

Research Studies

Abstract Background: Child health research is crucial to finding safe and effective treatments for children. However, child health research can be challenging in that it can require significant resources. Additionally, parents may need to make the decision to participate in a study during a stressful situation, such as an emergency department visit. Although innovative study design and methodology are being used to try and address these challenges, a key component of conducting more efficient, relevant and successful child health research is finding better ways to engage and involve parents in the research process from study conception to dissemination of results. Methods: We employed a cross-sectional, survey design to seek feedback from parents on 1) how they would like to learn about potential child health research studies that their child could participate in; 2) whether they would like to learn more about the research studies they are participating in; and 3) how they would like to receive information about studies they are participating in. Results: The survey findings demonstrate that parents are interested in hearing about opportunities to participate in child health research, particularly during visits to their general practitioner/pediatrician or walk-in clinics. Most parents would like to receive updates on the progress, results, and researchers involved in studies their child has participated in. Parents would also like to be provided with support to participate in research studies (i.e., travel or child care). Conclusion: This study is part of a larger initiative that is re-examining recruitment and retention methods to inform research teams in planning child health studies. In order to involve a wider range of parents and children in current and future studies, there must be strong engagement strategies in place, developed with parents, to effectively and respectively share research opportunities, progress and results, and demonstrate that their participation matters.

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Mixed methods study exploring parent engagement in child health research in British Columbia

BMJ Open ◽

10.1136/bmjopen-2018-025404 ◽

2019 ◽

Vol 9 (5) ◽

pp. e025404

Author(s):

Jennifer Smith ◽

Ian Pike ◽

Mariana Brussoni ◽

Lori Tucker ◽

Louise Mâsse ◽

...

Keyword(s):

British Columbia ◽

Mixed Methods ◽

Child Health ◽

Health Research ◽

Data Privacy ◽

Online Survey ◽

Research Process ◽

Parent Perspectives ◽

Online Platform ◽

Child Health Research

ObjectivesThe objective of this study was to explore parent perspectives of and interest in an interactive knowledge translation platform called Child-Sized KT that proposes to catalyse the collaboration of patients, families, practitioners and researchers in patient-oriented research at British Columbia Children’s Hospital (BCCH).MethodsAn explanatory sequential mixed methods design was used over 1 year. Over 500 parents across BC completed an online survey, including a subsample of 102 parents who had accessed care at BCCH within the past 2 years. The survey explored parent perspectives about the value of their engagement at all stages of the research process and their interest in and concerns with using an online platform. Following the online survey, two focus groups were held with parents in the Vancouver area to explore themes emerging from the survey.ResultsParents expressed keen interest in engaging in research at BCCH. Parents perceived benefit from their input at all stages of the research process; however, they were most interested in helping to identify the problem, develop the research question and share the results. Although parents preferred online participation, they had concerns about protecting the privacy of their child’s information.ConclusionsParents see value in their involvement in all stages of child health research at BCCH. Their input suggests that Child-Sized KT, a hypothetical online platform, would facilitate meaningful stakeholder engagement in child health research, but should offer a customised experience and ensure the highest standard of data privacy and protection.

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Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program

Journal of Multimorbidity and Comorbidity ◽

10.1177/2633556521999508 ◽

2021 ◽

Vol 11 ◽

pp. 263355652199950

Author(s):

Maureen Markle-Reid ◽

Rebecca Ganann ◽

Jenny Ploeg ◽

Gail Heald-Taylor ◽

Laurie Kennedy ◽

...

Keyword(s):

Older Adults ◽

Lived Experience ◽

Research Program ◽

Patient Engagement ◽

Health Research ◽

Research Process ◽

Research Unit ◽

Lessons Learned ◽

Meaningful Engagement ◽

Oriented Research

Background: Patient “engagement” in health research broadly refers to including people with lived experience in the research process. Although previous reviews have systematically summarized approaches to engaging older adults and their caregivers in health research, there is currently little guidance on how to meaningfully engage older adults with multimorbidity as research partners. Objectives: This paper describes the lessons learned from a patient-oriented research program, the Aging, Community and Health Research Unit (ACHRU), on how to engage older adults with multimorbidity as research partners. Over the past 7-years, over 40 older adults from across Canada have been involved in 17 ACHRU projects as patient research partners. Methods: We developed this list of lessons learned through iterative consensus building with ACHRU researchers and patient partners. We then met to collectively identify and summarize the reported successes, challenges and lessons learned from the experience of engaging older adults with multimorbidity as research partners. Results: ACHRU researchers reported engaging older adult partners across many phases of the research process. Five challenges and lessons learned were identified: 1) actively finding patient partners who reflect the diversity of older adults with multimorbidity, 2) developing strong working relationships with patient partners, 3) providing education and support for both patient partners and researchers, 4) using flexible approaches for engaging patients, and 5) securing adequate resources to enable meaningful engagement. Conclusion: The lessons learned through this work may provide guidance to researchers on how to facilitate meaningful engagement of this vulnerable and understudied subgroup in the patient engagement literature.

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