Engagement Organizations (Canada)
Federal Engagement Organizations (Independent)
The Canadian Association for Person-Centered Health is a national, non-partisan, independent, not-for-profit organization focused on establishing standards for person-centered healthcare in Canada and encouraging innovative eHealth research.
Canadian Family Advisory Network (CFAN):
The CFAN is a national network of family advisory groups across Canada. Founded in 2002, the CFAN seeks to link the various volunteer family advisory bodies that are attached to paediatric health centres, hospitals and rehabilitation centres. Membership is free and open to any group or individual that has an interest in family centered care.
Patient Advisors Network (PAN):
PAN is federally incorporated, not-for-profit group of patients and care-givers who seek to collaborate with healthcare providers, researchers, administrators, and policy makers to promote the incorporation of patient and family partnerships in the Canadian health system. The PAN website includes resources for patients who are interested in being involved in research, networking and advocacy opportunities, and guidance for patients and carers starting out as health system advisors.
A national, independent patient advocacy organization founded in 2011, Patients Canada seeks to ensure that patients are engaged as partners in decision making at all levels of the Canadian healthcare system. Formerly the "Patients' Association of Canada," since 2016 the organization has focused on four strategic goals: building a patient movement, developing collaborative partnerships with decision-makers, generating and disseminating patient priorities, and advocating for change on patient priorities.
A Toronto-based patient advocacy group dedicated to improving the patient experience in the Canadian healthcare system. Organized around critical health issues, Patient Commando seeks to encourage health service-users to collectively influence health policy decisions and amplify the patient voice by means of personal health narratives.
Provincial Engagement Organizations (Independent)
The IMAGINE group is an independent organization that advocates for patient and public involvement in the Alberta healthcare system. Their goal is to build the collective capacity of citizens and healthcare representatives in co-designing the healthcare system.
The Alberta-based Open Arms Patient Advocacy Society is a non-profit organization run by volunteers. They are committed to assist families and patients in obtaining information and support when they may have unanswered questions or complaints with respect to their treatment within the Alberta healthcare system.
The CHANGE foundation is an independent health policy think-tank that seeks to make patients, caregivers, and healthcare providers equal partners in the improvement of the healthcare system. Founded in 1995 through an endowment from the Ontario Hospital Association, their 2015-2020 strategic plan currently focuses on improving the experience of family caregivers as they navigate and engage with the Ontario's health and community care system.
Provincial Engagement Organizations (Health-System)
Founded as part of Ministry of Health's strategic patient and public engagement initiative, the Patients as Partners group funds health sector educational activities and events, and supports patient engagement across the healthcare system in British Columbia. They have received positive reviews for their efforts from a number of different patient engagement organizations, including Ontario's CHANGE Foundation.
The Patient Voices Network was founded in 2009 as part of the Ministry of Health's "Patients as Partners" strategy, and receive funding from the B.C. Patient Safety & Quality Council. They seek to ensure the inclusion of patient perspectives on the healthcare system, and provide linkages between research teams seeking patient partners with interested members of the public.
Provincial SPOR (Strategy for Patient Oriented Research) Support Units
Alberta SPOR Support Unit (AbSPORU):
One of the 11 SPOR Support Units established across Canada, the Alberta SPOR Support Unit (AbSPORU) offers support for medical researchers working in Alberta on patient engagement initiatives. As stated on their website, the AbSPORU will provide expertise and support to those engaged in patient-oriented research by: identifying patient needs and the research needed to address them, providing expertise in research methods, designing research studies, methodology training, and data access and services.
One of the 11 SPOR Support Units established across Canada, the BC SUPPORT (Support for People and Patient-Oriented Research and Trials) Unit offers services focused on patient engagement, research methods support, data access & use, knowledge translation, and training & capacity development through webinars, online resources, and an annual conference.
Maritimes SPOR Support Unit (MSSU):
One of the 11 SPOR Support Units established across Canada, The Maritimes SPOR Support Unit (MSSU) offers services, consultation and resources for researchers working on patient engagement in Canada's Maritime provinces. As stated on their website, the MSSU will: consult with research teams on patient engagement, support research teams through the planning and implementation of patient engagement strategies, provide resources and tools for patient engagement, and provide training in patient engagement.
Ontario SPOR Support Unit (OSSU):
One of the 11 SPOR Support Units established across Canada, The Ontario SPOR Support Unit (OSSU) is organized into 12 Research Centres, each focusing on a different area or aspect of health care, research, and knowledge dissemination. As stated on their website, the OSSU will: provide Ontario’s health system stakeholders with the enabling infrastructure, scientific knowledge and technical support required to conduct patient-oriented research, and to translate and transfer the latest research evidence to inform and implement more effective health policy and clinical practices throughout the province.
One of the 11 SPOR Support Units established across Canada, The Saskatchewan Centre for Patient Oriented Research (SCPOR) is a partnership of organizations that seek to support patient-oriented research in Saskatchewan. As stated on their website, the SCPOR will: provide multidisciplinary methodological expertise in patient-oriented research, assist decision makers and investigators to identify and design research studies, facilitate access to Saskatchewan health data and integrate existing or new databases, and provide training opportunities. The SCPOR is also committed to supporting Rural and Indigenous health research in the province.
One of the 11 SPOR Support Units established across Canada, The SRAP (Stratégie de recherche axée sur le patient) Unité de Soutien is the SPOR Support Unit for the province of Québec. As stated on their website, the SRAP group seeks to develop innovative methodologies, support patient-oriented research projects, and build patient-oriented research capacity for the Québec healthcare system. Please note that content for this website is written in French.
Engagement Organizations (United Kingdom)
Active since 2007, the National Survivor User Network is a U.K. based mental health advocacy group dedicated to promoting the voices of service-users in the design and delivery of the healthcare system. As of 2017, the organization has grown to more than 4500 members.
Established in 1996, INVOLVE is the U.K. National Health System's (NHS) primary organization for involving service-user and caregivers in public health and social care research. INVOLVE's website offers a wide range of guidance documents for both service-users and researchers, including tips on budgeting, involving young people and children, using social media, and compensation for service-user partners. Many of the resources offered can be easily adapted for different national contexts.
Engagement Organizations (Australia)
An independent, not-for-profit patient advocacy organization founded in 2002, the Health Consumers Alliance of Southern Australia (HCA) seeks to promote patient involvement in health-system design and health research. Though much of material here focuses on the Australian context, the HCA is an excellent example of how a member-driven advocacy organization can influence the culture of healthcare toward a mandated inclusion of service-user and caregiver perspectives (note: the term 'consumer' is the accepted term for 'service-user' or 'patient' in the context of the Australian healthcare system).
A government funded organization originally founded in the 1980s, the Consumers Health Forum seeks to represent the interests of Australian healthcare users and encourage patient engagement in health system research and design. Though a significant amount of their work focuses on policy development, the website includes newsletters, fact sheets, presentations and reports of interest to researchers seeking to partner with service-users.
Established in 2016, this Australian organization, guided by the National Health and Medical Research Council and the Consumers Health Forum, seeks to provide support for the development of governance and policy frameworks; training for researchers, consumers (service-users) and community members; community links, networks and forums; and resources, publications and a website to support involvement.
The Patient-Centered Outcomes Research Institute is an independent, not-for-profit organization established in 2010 that seeks to patients, caregivers, clinicians and insurers with the information needed to make better-informed healthcare decisions. They fund patient-engagement research, with a focus on comparative clinical effectiveness trials, or studies that compare the benefits and harms of two or more approaches to healthcare. The "Engagement" section of their website includes a searchable list of publications on service-user engagement in health research, with 1103 articles represented in their database.