Patient and Community Engagement Research (PACER)
PaCERis a health research incubator within the O’Brien Institute of Public Health and Community Health Sciences at the University of Calgary which was established in 2013. PaCER exists through active and ongoing partnerships with the Strategic Clinical Networks, Health Research teams and Innovative community and patient organizations.
PaCER supports to a growing cadre of highly skilled patient researchers (currently 40 in number) who have been trained in a year long internship in engagement research to:
- conduct patient engagement research to bring a patient research voice to health and health care decisions and implementation strategies.
- use evidence based research to inform and support innovative patient/ professionalrelationships to achieve cost effective futures and better health.
- provide a patient research voice in media to prepare patients to take up opportunities in precision medicine, information age medicine and other innovations the science of health and health care.
- mentor interns in a year long health research training program.
- consult and advise with researchers, academics, administrators on health research, engagement and co design.
- work with SCN and AHS networks and working groups
- foster and evaluate new research based patient roles
PaCER infrastructure consists of interested faculty and senior health care leaders and researchers, a small part time and volunteer staff providing education, basic infrastructure support and quality control. Together we create ways to train and employ PaCE researchers through a small contract enterprise called PacerInnovates.
This all began with a need to address gaps in Arthritis pathway research and the desire of senior health officials to bring a new patient perspective to the launch of Alberta’s Strategic Clinical Networks. A partnership of health care, health research and patients applied for a two year research project to design curriculum and train patients and family members to conduct research with other patients (grant ref).
Interns joined SCNs and their presence intrigued researchers and clinicians who wanted to learn how patient researchers could add new perspectives to research and quality improvement. A PaCER program with an advisory committee, strategic and strategic business plan was formed to support the innovative nature of PaCER and a small contract business, pacerinnovates was created in response to growing interest in patient led reseach. After two years of operation PaCER has trained 38 patient researchers, completed 13 research intership projects, and contracted over 20 research projects. Our graduates consult and publish widely on engagement research and health innovation.
How is PaCER an incubator?
- Responds to needs, challenges and opportunities by forming partnerships of patients, clinicians, administrators and researchers. It is spontaneous, based on specific pressing needs and promotes situation specific solutions.
- The SCNs use patient perspectives to introduce disruptive and fresh ideas to health care planning and research.
- New collective research voice in health care research publication stimulates interest of other researchers.
- New patient careers are identified in PaCER research.
- PaCER prepares patients and researchers to address the opportunities of Information age and personalized medicine related patient ownership and use of diagnostic and analytic data.
- A high impact, low risk business model encourages experimentation with methods, roles and relationships to reach a shared goal.
- Share and implement results through Open Access.
What we do?
The PACER program works to create the partnerships and infrastructure needed to transform the role of patients and families in health and health culture experience. We do this by:
- Bringing an authentic patient presence to research planning, projects and knowledge uptake;
- Training patient engagement researchers to design and conduct health experience research and to work in collaboration with health providers, planners and researchers;
- Promoting the hiring of patient engagement graduates within health care systems and agencies;
- Encouraging researchers, health providers and government officials to use patient engagement researchers;
- Building a sustainable infrastructure and focus within health science by creating a space where patients and families participate in an engaged dialogue with health researchers and care providers;
- Exploring and studying the nature and impact of patient engagement research on individuals, groups and health care culture; discovering and safeguarding its values and ethics;
- Seeking active local and international partners to promote the potential and integrity of the full range of patient engagement research.