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. 

Patient, family and caregiver group dedicated to patients, families and caregivers working with OHTs

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 Collaboration (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
RISEPartner organizationsMinistry of Health and Ontario HealthCurated searches
Population identification    
Segmentation for needs, risks and barriers   
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


 
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

  
Monitoring and evaluation  

 

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
RISEPartner organizationsMinistry of Health and Ontario HealthCurated 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
 
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

 
Building block #4: Patient care and experience and service delivery (how are patient experiences and outcomes measured and supported?)

  
Building block #5: Digital health and information sharing (how are data and digital solutions harnessed?)   
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

  
Building block #7: Funding and incentive structure (how are financial arrangements aligned?)   
Building block #8: Performance measurement, quality improvement, and continuous learning (how is rapid learning and improvement supported?)  

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

Population groupResources
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 
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 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.