Patients and caregivers are actively partnering in health research globally -- and Canada is no exception.
It is still important that we continue to be subjects of research.
As partners, patients and caregivers are helping to set research priorities, to evaluate research, and to partner on research teams. Researchers are starting to value the perspective of patients and caregivers as an essential piece of the research puzzle.
Federally, the Canadian Institutes of Health Research (CIHR) launched its Strategy for Patient Oriented Research (SPOR) initiative in 2011 . More about SPOR
Currently there are several pan-Canadian SPOR Networks:
a) SPOR Networks in Chronic Disease - learn about the 5 networks under Chronic Disease.
b) SPOR Network in Youth and Adolescent Mental Health – ACCESS Open Minds - more
c) Pan-Canadian SPOR Network in Primary and Integrated Health Care Innovations - more
SPOR SUPPORT Units
There are SPOR SUPPORT Units in most provinces/territories that work within their jurisdictions to promote the inclusion of patients and caregivers as partners in research. - for a complete list of SPOR SUPPORT Units.
Many of these Units support groups of patients and caregivers active as partners on research teams with training and networking.
The Patient and Community Engagement Research or PaCER program is part of the O’Brien Institute of Public Health in the Cumming School of Medicine in partnership with the Strategic Clinical Networks (SCNs) in Alberta. More about PaCER.
PaCER is a 1 year university-based training program that prepares patients, family members and students to become researchers by designing and conducting research.
This is a unique opportunity for patients and family members. While it is based in Calgary, PaCER is looking at expanding to an online format -- stay tuned!
Other National Organizations
The Canadian Institute for Health Information (CIHI) is an independent, not-for-profit organization that provides essential information on Canada’s health systems and the health of Canadians.
The Canadian Foundation for Healthcare Improvement (CFHI) is a not-for-profit organization funded by the Government of Canada, dedicated to accelerating healthcare improvement. CFHI plays a unique, pan-Canadian role in spreading healthcare innovations.
Resources on Health Research
Public, patients and caregivers are involved in research as partners and panel members on research team and in helping to set research priorities.
Primary Health Care Research & Information Service (2017). PHCRIS Getting Started Guides: Introduction to... Consumer involvement in research. http://www.phcris.org.au/guides/consumer_participation.php
Once you get over the semantic bump of the Australian use of “consumers” for those whom we call “patients”, you will find a great array of information from this highly useful website. Although the focus is on primary care, there’s much useful orientation on research generally. I highly recommend these clear ‘how to’ tutorials on what research is and how it is done. Language is clear and the content is sophisticated.
“The Primary Health Care Research and Information Service (PHCRIS), based at Flinders University, …has been funded by the Australian Government Department of Health to undertake a broad range of activities related to synthesising and sharing research evidence and engaging with primary health care researchers, policy-makers, practitioners and consumers to facilitate knowledge exchange. This core funding will cease at the end of 2016. From 2017, some elements of PHCRIS will continue, with support from Flinders University.”
Australian National Health and Medical Research Council’s The Consumer and Community Health Research Network http://www.involvingpeopleinresearch.org.au
This active organization situated in Western Australia has a national and international network of collaborators. Take a look at this friendly website with plain language discussion of patient (“consumer”) and community involvement in research. There are sections addressing researchers as well as members of the public on collaborative research. In addition to how-to sections, there are reports on projects. For example, they’ve undertaken community-based research priority-setting for domestic and family violence. As they say…
• We bring together consumers, community members and researchers to make decisions about health research priorities, policy and practice.
• We support consumer and community involvement to become standard practice in health research.
• We promote the community ‘voice’ in health research through our services, resources, events and training programs.