Resources to support patient, family and caregiver engagement and partnership

Join the OHT communities of practice focused on patient, family and caregiver partnership and engagement on the OHT Shared Space.

Patient, family and caregiver engagement and partnership community of practice for patients, families and caregivers working with OHTs, OHT staff interested in and supporting engagement, and provincial organizations supporting partnership and engagement.

Improving equitable access to care and improving health outcomes and experiences is core to the vision for Ontario Health Teams (OHTs). As outlined in the OHT guidance document released in 2019, patient, family and caregiver engagement and partnership is a foundational building block of the OHT model and critical to the implementation of a population-health management approach.

Many OHTs are strengthening partnerships with patients, families and caregivers as a central element of OHT development. OHTs are engaging patients, families and caregivers as key partners in decision-making in governance (e.g., as steering committee members), leadership (e.g., as Patient and Family Advisory Council chairs), and co-design processes (e.g., as working group co-leaders). Key guidance documents to support OHTs in advancing patient, family and caregiver engagement across their spectrum of work are the Patient, Family and Caregiver Declaration of Values for Ontario and the guidance document to support OHTs in developing their Patient, Family and Caregiver Partnership and Engagement Strategy.

To support meaningful engagement and partnership with patients, families and caregivers, OHTs can draw on the assets and resources that have been developed by the ministry as well as health-system partners, including the Health Systems Policy Network (HSPN), Ontario Caregiver Organization (OCO), Ontario Health (OH), Public and Patient Engagement Collaborative (PPEC), and Rapid Improvement Support and Exchange (RISE), among others.

Organized below by population-health management component, each of the eight OHT building blocks, and population focus, the following assets and resources provide guidance for all OHTs to strengthen meaningful patient, family and caregiver engagement and partnership.

Resources to support patient, family and caregiver engagement in OHTs’ planning, design and delivery of services organized by population-health management component

Component in population-health management approach, including implementation considerations	Resources
	RISE	Partner organizations	Ministry of Health and Ontario Health	Curated searches
Population identification		The Entités developed a provincial guide highlighting the importance of identifying Francophone patients
Segmentation for needs, risks and barriers		Health Commons Solutions Lab developed a tool to map available community services The Public and Patient Engagement Collaborative developed the Supporting Equity Centred Engagement: A Step-by-Step Guide with Tailored Resources, which highlights key considerations with tailored resources to support OHTs to bring a stronger equity focus to their engagement work	Ontario Health developed a resource to support recruiting for diversity in engagement
Co-designing person-centered care models and service mix	Rapid synthesis and brief on empowering caregivers to deliver home-based restorative care Citizen brief and panel summary on engaging patients, families and caregivers in OHTs Webinar on how OHTs can meaningfully engage their community and develop appropriate mechanisms for communication Plain language summary - Five areas should be prioritized to increase public participation and influence in local decision-making	HSPN developed a webinar and accompanying presentation deck on the quadruple aim -patient-reported experience HSPN has a patient and caregiver engagement resource page and OHT patient survey resources, including OHT patient experience survey OCO has a resource section to support meaningful engagement and co-design OCO developed a brief and video on caregiver perspectives on meaningful engagement OCO offers guidelines on 15 ways to support meaningful engagement with patients, families and caregivers OCO offered a series of webinars on supporting and engaging caregivers in OHTs, including caregivers as part of the care team, and supporting caregiver well-being. The Algoma Ontario Health Team developed a Community Partnership Toolkit that can help other organizations include patients, families, and caregivers in their work PPEC developed Creating Engagement Capable Environments in Ontario Health Teams: A Framework for Action in collaboration with patient, family, and caregiver partners and engagement leads from OHTs, the MPFAC Chair, and the Ministry of Health. This framework outlines the competencies, supports and enablers needed to build engagement-capable OHTs along with a one-stop shop of resources to facilitate learning and development The Muskoka and Area OHT developed an FAQ document to support learning about PFC partnership, engagement, and co-design.	The Ministry of Health developed a guidance document to outline requirements and supports to OHTs in developing their Patient, Family and Caregiver Partnership and Engagement Strategy The Minister’s Patient and Family Advisory Council and the Ministry of Health co-designed a webinar with guidance on patient, family and caregiver partnership and the amended provincial Patient, Family and Caregiver Declaration of Values Ontario Health developed Ontario’s patient engagement framework Ontario Health developed the equity in engagement framework Ontario Health developed a resource to guide engagement and partnership and to support patients, families and caregivers joining committees Ontario Health developed a resource on plain language communication and common acronyms used in health care Ontario Health developed modifiable templates for a terms of reference for patient, family and caregiver advisory committees (PFAC) and a PFAC participant agreement
Implementation and reach	Plain language summary - Patient‐reported health information and patient education can improve healthcare professionals’ adherence to recommended clinical practice Plain language summary - Community engagement, culture centeredness, systems thinking, and integrated knowledge translation are key to implement health interventions in Indigenous communities	Indigenous Primary Health Care Council (IPHCC) developed a toolkit to support safer health system environments for Indigenous people in Ontario PPEC prepared a brief on early lessons from engagement and partnership experiences in OHTs
Monitoring and evaluation		PPEC has developed two evaluation tools The Public and Patient Engagement Evaluation Toolkit (PPEET) to evaluate the process of engagement and early impacts for use with patient, family and caregiver advisors as well as organizations for short-term and long-term projects The Engage with Impact toolkit to support the development of an evaluation plan and logic model to evaluate the impacts of engagement PPEC developed a webinar series to support implementation of the Engage with Impact Toolkit PPEC offers coaching upon request to support the evaluation of patient, family and caregiver engagement (including the implementation of the PPEET and Engage with Impact Toolkit)	Ontario Health developed a guide to evaluate the impact of partnership with patients, families and caregivers

Resources to support patient, family and caregiver engagement in OHTs’ planning, design and delivery of services organized by OHT building block

OHT building blocks	Resources
OHT building blocks	RISE	Partner organizations	Ministry of Health and Ontario Health	Curated searches
Building block #1: Defined patient population toward population health management and equity (who is covered, and what does ‘covered’ mean?)	Plain language summary - community engagement, culture centredness, systems thinking, and integrated knowledge translation are key to implement health interventions in Indigenous communities	Health Commons Solutions Lab developed a tool to map available community services IPHCC developed a toolkit to support safer health system environments for Indigenous people in Ontario	Ontario Health developed an equity, inclusion, diversity and anti-racism framework
Building block #2: In-scope services (what is covered?)
Building block #3: Patient partnership and community engagement (how are patients engaged)	Rapid synthesis and brief on empowering caregivers to deliver home-based restorative care Citizen brief and panel summary on engaging patients, families and caregivers in OHTs Webinar on how OHTs can meaningfully engage their community and develop appropriate mechanisms for communication Plain language summary - Five areas should be prioritized to increase public participation and influence in local decision-making Plain language summary – community engagement, culture centredness, systems thinking, and integrated knowledge translation are key to implement health interventions in Indigenous communities	OCO developed a brief and video on caregiver perspectives on meaningful engagement OCO offers guidelines on 15 ways to support meaningful engagement with patients, families and caregivers OCO offered a series of webinars on supporting and engaging caregivers in OHTs, including caregivers as part of the care team, and supporting caregiver well-being. PPEC has developed two evaluation tools: The Public and Patient Engagement Evaluation Toolkit (PPEET) to evaluate the process of engagement and early impacts for use with patient, family and caregiver advisors as well as organizations for short-term and long-term projects The Engage with Impact Toolkit, to support the development of an evaluation plan and logic model to evaluate the impacts of engagement PPEC developed a webinar series to support implementation of the Engage with Impact Toolkit PPEC offers coaching upon request to support the evaluation of PFC engagement (including the implementation of the PPEET and the Engage with Impact Toolkit) PPEC developed a brief on learning from early experiences in patient, family and caregiver engagement in OHTs Together with RISE and patient, family and caregiver partners, PPEC conducted a survey on OHTs’ experiences developing their Patient, Family and Caregiver Engagement Strategies PPEC developed Creating Engagement Capable Environments in Ontario Health Teams: A Framework for Action in collaboration with patient, family, and caregiver partners and engagement leads from OHTs, the MPFAC Chair, and the Ministry of Health. This framework outlines the competencies, supports and enablers needed to build engagement-capable OHTs along with a one-stop shop of resources to facilitate learning and development The Muskoka and Area OHT developed an FAQ document to support learning about PFC partnership, engagement, and co-design. The Public and Patient Engagement Collaborative developed the Supporting Equity Centred Engagement: A Step-by-Step Guide with Tailored Resources, which highlights key considerations with tailored resources to support OHTs to bring a stronger equity focus to their engagement work The Institute for Better Health created an OHT Patient, Caregiver & Community Engagement Learning Series Workbook 1: Communication, compassion & empathy Workbook 2: Bearing witness to lived experience Workbook 3: Equity, diversity and inclusion Workbook 4: Leaning into the challenges Workbook 5: Preparing for engagement activities Workbook 6: Engagement methods Workbook 7: Evaluating engagement Trillium Health Partners’ Institute for Better Health collaborated with patients, families and caregivers, OHT support partners, the ministry and Support House to develop a Patient, Caregiver & Community Engagement Learning Series including webinars and workbooks on key competencies for meaningful engagement.	The Ministry of Health developed a guidance document to outline requirements and support OHTs in developing their patient, family and caregiver partnership and engagement strategy The Minister’s Patient and Family Advisory Council and the Ministry of Health co-designed a webinar with guidance on patient, family and caregiver partnership and the amended provincial Patient, Family and Caregiver Declaration of Values Ontario Health developed Ontario’s Patient Engagement Framework Ontario Health developed the Equity in Engagement Framework Ontario Health developed resources for patients, families and caregivers and health care providers to support partnership and engagement Ontario Health developed a resource to guide engagement and partnership and to support patients, families and caregivers joining committees Ontario Health developed a resource on plain language communication and common acronyms used in health care Ontario Health developed modifiable templates for a terms of reference for patient, family and caregiver advisory committees (PFAC) and a PFAC participant agreement
Building block #4: Patient care and experience and service delivery (how are patient experiences and outcomes measured and supported?)	See population-specific resources in next table or through RISE briefs on older adults, people with chronic conditions, mental health and addictions issues and people who could benefit from a palliative approach to care for additional resources on patient care and experience Rapid synthesis and brief on empowering caregivers to deliver home-based restorative care	HSPN developed a webinar and accompanying presentation deck on the quadruple aim -patient-reported experience HSPN has a patient and caregiver engagement resource page and OHT patient survey resources, including OHT patient experience survey OCO offered a series of webinars on supporting and engaging caregivers in OHTs, including caregivers as part of the care team, supporting caregiver well-being OCO partnerships team is available on request to provide guidance to OHT’s on caregiver engagement, support and inclusion in patient care The Algoma Ontario Health Team developed a Community Partnership Toolkit that can help other organizations include patients, families, and caregivers in their work
Building block #5: Digital health and information sharing (how are data and digital solutions harnessed?)		The Centre for Addiction and Mental Health developed a report on patient and family engagement in health information technology initiatives
Building block #6: Leadership, accountability and governance (how are governance and delivery arrangements aligned, and how are providers engaged?)	Plain language summary - Five areas should be prioritized to increase public participation and influence in local decision-making	HSPN ADVANCE developed learning modules on topics such as OHT leadership and shared accountability PPEC developed the Public and Patient Engagement Evaluation Toolkit (PPEET) to evaluate the process of engagement and early impacts to survey PFC advisors as well as organizations for short-term and long-term projects
Building block #7: Funding and incentive structure (how are financial arrangements aligned?)		The Change Foundation developed a decision-aid to support patient and caregiver compensation OCO developed a resource on 7 things to think about when considering compensation for patient, family and caregiver advisors
Building block #8: Performance measurement, quality improvement, and continuous learning (how is rapid learning and improvement supported?)		PPEC has developed two evaluation tools The Public and Patient Engagement Evaluation Toolkit (PPEET) to evaluate the process of engagement and early impacts for use with patient, family and caregiver advisors as well as organizations for short-term and long-term projects The Engage with Impact toolkit to support the development of an evaluation plan and logic model to evaluate the impacts of engagement PPEC developed a webinar series to support implementation of the Engage with Impact Toolkit PPEC offers coaching upon request to support the evaluation of patient, family and caregiver engagement (including the implementation of the PPEET and Engage with Impact Toolkit) PPEC developed a brief on learning from early experiences in patient, family and caregiver engagement in OHTs	The ministry commissioned a citizens’ report on successful community engagement in the LHINs from Kingston, Richmond Hill and Thunder Bay (with a scorecard included on pg 93) Ontario Health developed a guide to evaluate the impact of partnership with patients, families and caregivers

Resources to support patient, family and caregiver engagement in OHTs’ planning, design and delivery of services organized by population focus

Population group	Resources
Older adults	Regional Geriatric Programs of Ontario offer a suite of tools for implementing senior-friendly care Behavioural Supports Ontario’s provincial lived experience advisory network includes people with dementia, neurological conditions, or mental health and/or substance-use problems and their caregivers Regional Geriatric Programs of Ontario conducted a series of focus groups to understand the education needs of informal caregivers who support older adults living with frailty An Ontario Health report on caregiver distress and an Ontario Caregiver Organization publication spotlight on Ontario’s caregivers describe the challenges faced by unpaid caregivers, including those caring for older adults with greater needs Health TAPESTRY supports trained volunteers to visit people where they live and learn about their health needs and goals. They send the information to their primary-care-anchored health team to inform care planning, and often check in again on progress The Indigenous cognition and aging-awareness research exchange develops resources and tools relating to culturally safe dementia care for Indigenous people Ontario Centres for Learning, Research and Innovation in Long-Term Care have resources for supporting diverse older adults in long-term care including LGBTQ+ and Francophone older adults The McMaster University Collaborative for Health and Aging developed a guidance document on principles and strategies for partnering with older adults, caregivers and public research partners
People with chronic conditions	Ontario Health developed a patient conversation guide to support patients, families and caregivers with the management of heart failure, chronic obstructive pulmonary disease, dementia, diabetes (Type 1) (draft), pre-diabetes and diabetes (Type 2) (draft) The University of Ottawa Heart Institute produced a guide for patients and families on managing heath failure The Northwestern Ontario Regional Stroke Network developed a toolkit for working with Indigenous people in northwestern Ontario Indigenous diabetes health circle strengthens Indigenous community capacity to reduce the impact of diabetes The Ontario Native Women’s Association administers an Aboriginal diabetes education and awareness project
People with mental health and addictions concerns	The Provincial System Support Program at CAMH published Fostering meaningful engagement of persons with lived experience at the systems level The Ontario Centre of Excellence for Child and Youth Mental Health has created standards for family and youth engagement, and The New Mentality initiative also offers a workbook for youth engagement The New Mentality initiative published youth-led policy recommendations for improved preventive mental health care, reduced wait times and more supportive school environments for youth with mental health challenges The Centre for Addiction and Mental Health developed mental health promotion guides for three specific populations: children and youth, older adults and refugees A number of resources exist with respect to the engagement of peers within organizations: The Ontario Peer Development Initiative represents peer-led and consumer/survivor organizations in Ontario, and provides peer support training Addictions and Mental Health Ontario published a report on best practices in peer support The Provincial System Support Program offers a workbook for organizations seeking to engage peers The Centre for Innovation in Campus Mental Health offers a toolkit for developing relationships between community mental health service agencies and campus mental health services Resources related to engaging specific populations include: The Shkaabe Makwa initiative, based at the Centre for Addiction and Mental Health, fosters partnerships between mental health and addictions services and First Nations, Inuit, and Métis communities, and supports culturally relevant initiatives EENet’s communities of interest offer resources around common issues in mental health and addictions, offering evidence-based approaches to service and system design The Ontario Caregiver Organization has an e-learning series for caregivers and providers for caregivers who are supporting individuals with mental health The Ontario Caregiver Organization has resources on privacy and consent for caregivers supporting someone in the mental health and addiction system
People who could benefit from a palliative approach to care	Ontario Palliative Care Network created a guide to support providers with engaging patients and their families and caregivers in discussions about advance care planning, goals of care and consent Ontario Palliative Care Network has created a one-page guide for healthcare providers on person-centred decision-making Quality Hospice Palliative Care Coalition of Ontario has developed the Patient and caregiver declaration of rights at end-of-life (available by request through info@hpco.ca) Hospice Palliative Care Ontario developed a strategy on how to create compassionate communities Ontario Health (Cancer Care Ontario) developed a palliative care toolkit for Indigenous communities which can be used to help support those with cancer who have palliative-care needs

If you know of a resource that would be helpful to include on this page, please send it to rise@mcmaster.ca.

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Resources to support patient, family and caregiver engagement and partnership