Engagement of patient and family advisors in health system redesign in Canada

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Abstract

Objectives

Globally, there has been a shift towards integrated care delivery and patient-centredness in the design of health services. Such a transformation is underway in Ontario, which is progressively using an interprofessional team-based approach known as Ontario Health Teams (OHTs) to deliver care. During their initial development, OHTs were required to integrate patient and families’ preferences, experiences and opinions in the form of consultation and partnership with patient and family advisors (PFAs). This study aimed to understand how PFAs were involved in the early stages of planning for health system change and the perceived benefits of including PFAs in system reform.

Methods

This study used a qualitative descriptive design. Semi-structured interviews were conducted with 126 participants at 12 OHTs, including PFA ( n = 16) and non-PFA ( n = 110) members (e.g. clinicians). Data were analysed thematically.

Results

We identified four themes; mechanisms of engagement, motivations to engage, challenges to PFA engagement and PFAs’ impact and added value. Overall, participants viewed PFA engagement positively and PFAs felt valued and empowered. There remain logistical challenges around PFA compensation, and the amount of time and training expected of PFAs. However, all participants believed that developing an understanding of the patient, caregiver and family experience will strengthen the engagement of PFAs in OHT planning, decisions and policies.

Conclusions

Diverse approaches to and stages of PFA engagement fostered meaningful and highly valued contributions to OHT development. These were considered critical to successfully achieving the mandate of patient-centred care reform.

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Most cited references 28

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What's in a name? Qualitative description revisited.

Margarete Sandelowski (2010)

"Whatever Happened to Qualitative Description?" (Sandelowski, 2000) was written to critique the prevailing tendency in qualitative health research to claim the use of methods that were not actually used and to clarify a methodological approach rarely identified as a distinctive method. The article has generated several misconceptions, most notably that qualitative description requires no interpretation of data. At the root of these misconceptions is the persistent challenge of defining qualitative research methods. Qualitative description is a "distributed residual category" (Bowker & Star, 2000). Cambridge, MA: The MIT Press) in the classification of these methods. Its value lies not only in the knowledge its use can produce, but also as a vehicle for presenting and treating research methods as living entities that resist simple classification.

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Guidance on how to develop complex interventions to improve health and healthcare

Alicia O'Cathain, Liz Croot, Edward Duncan … (2019)

Objective To provide researchers with guidance on actions to take during intervention development. Summary of key points Based on a consensus exercise informed by reviews and qualitative interviews, we present key principles and actions for consideration when developing interventions to improve health. These include seeing intervention development as a dynamic iterative process, involving stakeholders, reviewing published research evidence, drawing on existing theories, articulating programme theory, undertaking primary data collection, understanding context, paying attention to future implementation in the real world and designing and refining an intervention using iterative cycles of development with stakeholder input throughout. Conclusion Researchers should consider each action by addressing its relevance to a specific intervention in a specific context, both at the start and throughout the development process.

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Engaging patients to improve quality of care: a systematic review

Yvonne Bombard, G Ross Baker, Elaina Orlando … (2018)

Background To identify the strategies and contextual factors that enable optimal engagement of patients in the design, delivery, and evaluation of health services. Methods We searched MEDLINE, EMBASE, CINAHL, Cochrane, Scopus, PsychINFO, Social Science Abstracts, EBSCO, and ISI Web of Science from 1990 to 2016 for empirical studies addressing the active participation of patients, caregivers, or families in the design, delivery and evaluation of health services to improve quality of care. Thematic analysis was used to identify (1) strategies and contextual factors that enable optimal engagement of patients, (2) outcomes of patient engagement, and (3) patients’ experiences of being engaged. Results Forty-eight studies were included. Strategies and contextual factors that enable patient engagement were thematically grouped and related to techniques to enhance design, recruitment, involvement and leadership action, and those aimed to creating a receptive context. Reported outcomes ranged from educational or tool development and informed policy or planning documents (discrete products) to enhanced care processes or service delivery and governance (care process or structural outcomes). The level of engagement appears to influence the outcomes of service redesign—discrete products largely derived from low-level engagement (consultative unidirectional feedback)—whereas care process or structural outcomes mainly derived from high-level engagement (co-design or partnership strategies). A minority of studies formally evaluated patients’ experiences of the engagement process (n = 12; 25%). While most experiences were positive—increased self-esteem, feeling empowered, or independent—some patients sought greater involvement and felt that their involvement was important but tokenistic, especially when their requests were denied or decisions had already been made. Conclusions Patient engagement can inform patient and provider education and policies, as well as enhance service delivery and governance. Additional evidence is needed to understand patients’ experiences of the engagement process and whether these outcomes translate into improved quality of care. Registration N/A (data extraction completed prior to registration on PROSPERO). Electronic supplementary material The online version of this article (10.1186/s13012-018-0784-z) contains supplementary material, which is available to authorized users.

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Author and article information

Journal

Journal ID (nlm-ta): J Health Serv Res Policy

Journal ID (iso-abbrev): J Health Serv Res Policy

Journal ID (hwp): sphsr

Journal ID (publisher-id): HSR

Title: Journal of Health Services Research & Policy

Publisher: SAGE Publications (Sage UK: London, England )

ISSN (Print): 1355-8196

ISSN (Electronic): 1758-1060

Publication date (Electronic): 2 July 2022

Publication date (Print): January 2023

Volume: 28

Issue: 1

Pages: 25-33

Affiliations

[1 ]Associate Professor, School of Health Studies, Faculty of Health Sciences, Department of Family Medicine, Schulich School of Medicine and Dentistry, The Schulich Interfaculty Program in Public Health, Schulich School of Medicine and Dentistry, Ringgold 6221, universityWestern University; , London, Canada

[2 ]Senior Academic Research Coordinator, Department of Medicine- Geriatrics, Ringgold 7989, universitySinai Health/University Health Network; , Toronto, ON, Canada

[3 ]Researcher, Institute of Health Policy, Management and Evaluation, Ringgold 7938, universityUniversity of Toronto; , Toronto, ON, Canada

[4 ]Research Chair, Institute for Better Health, Adjunct Scientist at ICES, Professor, Institute of Health Policy, Management and Evaluation, Ringgold 7938, universityUniversity of Toronto; , Toronto, ON, Canada

Author notes

[*]Shannon L Sibbald, School of Health Studies, Faculty of Health Sciences, Department of Family Medicine, Schulich School of Medicine and Dentistry, The Schulich Interfaculty Program in Public Health, Schulich School of Medicine and Dentistry, Western University, Room 334, Arthur & Sonia Labatt Health Sciences Building, 1151 Richmond Street, London, ON N6A 5B9, Canada. Email: ssibbald@ 123456uwo.ca

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Walter P Wodchis https://orcid.org/0000-0003-2494-7031

Article

Publisher ID: 10.1177_13558196221109056

DOI: 10.1177/13558196221109056

PMC ID: 9850384

PubMed ID: 35786052

SO-VID: 4e5abc9b-ea6a-4abb-886b-fc074a8d067c

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This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

History

Funding

Funded by: Ontario Ministry of Health;

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ScienceOpen disciplines: Social policy & Welfare

Keywords: patient and family advisors,co-design,health system design

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ScienceOpen disciplines: Social policy & Welfare

Keywords: patient and family advisors, co-design, health system design

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Most cited references 28

What's in a name? Qualitative description revisited.

Guidance on how to develop complex interventions to improve health and healthcare

Engaging patients to improve quality of care: a systematic review

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