ArticleHealth expectations : an international journal of public participation in health care and health policy2020
A co-designed framework to support and sustain patient and family engagement in health-care decision making.
Article in Health expectations : an international journal of public participation in health care and health policy, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A decision aid to support family carers of people living with dementia towards the end-of-life: Coproduction process, outcome and reflections.Health expectations : an international journal of public participation in health care and health policy · 2021Pooled it
- Identity Reconstruction Through Leisure Activities in Parkinson's Disease: A Three-Case Qualitative Report.Cureus · 2026Article
- Supporting the continuous development and use of a patient partnership framework in European rare disease networks (ERNs): a scoping review of frameworks in the scientific literature.Journal of community genetics · 2025Review
- Between regulatory functions and emotional burden: balancing engagement in digital health interventions for self-care in chronic illness.Frontiers in psychology · 2025Article
- Perspectives of cancer consumer representatives on their involvement in healthcare service improvement: a qualitative study.BMC health services research · 2024Article
- Experiences of people with Long Covid with a digital physiotherapy intervention: A qualitative study.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- Co-building a training programme to facilitate patient, family and community partnership on research grants: A patient-oriented research project.Health expectations : an international journal of public participation in health care and health policy · 2023Article
- Review
- Factors Impacting User Engagement in Reablement: A Qualitative Study of User, Family Member and Practitioners' Views.Journal of multidisciplinary healthcare · 2023Article
- Parents' perspectives on user participation and shared decision-making in adolescents' inpatient mental healthcare.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- The impact of COVID-19 on patient engagement in the health system: Results from a Pan-Canadian survey of patient, family and caregiver partners.Health expectations : an international journal of public participation in health care and health policy · 2022Article
- Incorporating the patient voice and patient engagement in GOAL-Hēm: Advancing patient-centric hemophilia care.Research and practice in thrombosis and haemostasis · 2022Article
- Methods to Generate Innovative Research Ideas and Improve Patient and Public Involvement in Modern Epidemiological Research: Review, Patient Viewpoint, and Guidelines for Implementation of a Digital Cohort Study.Journal of medical Internet research · 2021Review
- ReIMAGINE: a prostate cancer research consortium with added value through its patient and public involvement and engagement.Research involvement and engagement · 2021Article
- Organizational capacity for patient and family engagement in hospital planning and improvement: interviews with patient/family advisors, managers and clinicians.International journal for quality in health care : journal of the International Society for Quality in Health Care · 2021Article
- How do health services engage culturally and linguistically diverse consumers? An analysis of consumer engagement frameworks in Australia.Health expectations : an international journal of public participation in health care and health policy · 2021Article
- Co-designing strategies to support patient partners during a scoping review and reflections on the process: a commentary.Research involvement and engagement · 2021Article
- Co-design of Guidance for Patient and Public Involvement in Psychedelic Research.Frontiers in psychiatry · 2021Article
- A co-designed framework to support and sustain patient and family engagement in health-care decision making.Health expectations : an international journal of public participation in health care and health policy · 2020Article
- 23.4 Briefing.Health expectations : an international journal of public participation in health care and health policy · 2020Article
Corrections and comments
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Authors and funding
9 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPatient and family engagement in health care has emerged as a critical priority. Understanding engagement, from the perspective of the patient and family member, coupled with an awareness of how patient and family members are motivated to be involved, is an important component in increasing the effectiveness of patient engagement initiatives. The purpose of this research was to co-design a patient and family engagement framework.
methodsWorkshops were held to provide additional context to the findings from a survey. Participants were recruited using a convenience sampling strategy. Workshop data collected were analysed using a modified constant comparative technique. The core research team participated in a workshop to review the findings from multiple inputs to inform the final framework and participated in a face validity exercise to determine that the components of the framework measured what they were intended to measure.
resultsThe framework is organized into three phases of engagement: why I got involved; why I continue to be involved; and what I need to strengthen my involvement. The final framework describes seven motivations and 24 statements, arranged by the three phases of engagement.
conclusionThe results of this research describe the motivations of patient and family members who are involved with health systems in various roles including as patient advisors. A deeper knowledge of patient and family motivations will not only create meaningful engagement opportunities but will also enable health organizations to gain from the voice and experience of these individuals, thereby enhancing the quality and sustainability of patient and family involvement.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.