Co-developing patient and family engagement indicators for health system improvement with healthcare system stakeholders: A consensus study Passed
Wednesday May 15, 2024 15:21 - 15:27 G2
Moderator: Emmelie Barenfeld
Presenter: Maria J. Santana
Track: Co-creation
Background:
Increasingly patients have been involved in health research and system transformation to inform priorities, care delivery and outcomes. While efforts to advance patient engagement in health research and system transformation exist; currently there are no system level indicators
to measure meaningful patient engagement.
Objective:
The objective of this work is to develop a set of patient and family engagement indicators (PFE-Is) for measuring engagement in health system improvement for a Canadian provincial health delivery system.
Methods:
The three-phase project included: (1) review of the literature on measures of patient and family engagement. The Public and Patient Engagement Evaluation Tool (PPEET) was selected after consultations with a provincial advisory council; (2) surveys and one-on-one semi structured interviews with patient and family advisors, and staff members of the Alberta Health Services’ Strategic Clinical Networks™ (SCNs) were conducted to capture the experiences of participants working together within their SCNs; (3) Delphi consensus process to identify and refine a core set of PFE-Is.
Results:
Specifically, 33 PFE-Is were developed through the survey results and themes identified from the interviews with stakeholders. These 33 drafted indicators were presented to the Delphi panel for prioritization. The consensus process yielded 18 final PFE-Is after 3 rounds of voting. These included indicators related to communication, comfort to contribute, supports needed for engagement, impact and influence of the engagement initiative, diversity of perspectives, respectful engagement, and working together. The indicators align with the core principles highlighted in the Canadian Institutes of Health Research (CIHR) Strategy for Patient-Oriented Research (SPOR) Patient Engagement Framework: Inclusiveness, Support, Mutual Respect, and Co-Build.
Conclusion:
This group of final PFE-Is can be used to measure and evaluate meaningful engagement in health research and system transformation. The use of these metrics can help to improve the quality of patient and family engagement to drive health research and system transformation.
Seminar type
Pre-recorded + On-site
Lecture type
Orals
Conference
GCPCC
Authors
Maria J. Santana, Sadia Ahmed, Paul Fairie, Sandra Zelinsky, Gloria Wilkinson, Tamara L. McCarron
Lecturers
Emmelie Barenfeld Moderator
Researcher, Reg. OT
University of Gothenburg
I am employed as a lecturer at the occupational therapy program at University of Gothenburg. I work in various research projects affiliated to the Center for Person-Centred Care (GPCC), as well as in projects affiliated to the Center for Aging and Health (AgeCap).
Research area:
My focus as a researcher lies on how the transition to a more person-centred care can be supported through various interventions. I apply an occupational science perspective in the research. Ongoing research projects evaluate person-centered interventions from a patient perspective as well as educational interventions to support the implementation of person-centered approaches among staff and managers/leaders. The research projects are conducted in different contexts and in collaboration with patients, staff and leaders.
Maria J. Santana Presenter
Cumming School of Medicine, University of Calgary
Dr. Maria J. Santana is a health services researcher, patient and family-centred care scientist, Professor in the departments of Pediatrics and Community Health Sciences at the Cumming School of Medicine, University of Calgary, Canada.
Dr. Santana has received training in clinical pharmacy (BPharm, MPharm, London School of Pharmacy, UK, Universidad La Laguna, Spain), public health and clinical epidemiology (PhD, University of Alberta, Canada).
She is the provincial director, Patient Engagement for the Alberta Strategy for Patient-oriented Research (https://absporu.ca/patient-engagement-2/ ). She is the principal investigator for the Person-centred Care Research Team, https://cumming.ucalgary.ca/research/person-centred-care and the academic director of the Patient and Community Engagement in Research, PaCER, https://www.ucalgary.ca/patient-community-engagement-research .
In 2023, she received the President Award by the International Society for Quality of Life Research. Recently, she has collaborated in three major international initiatives: World Health Organization - Patient Engagement: Technical Series on Safer Primary Care; Pan-American Health Organization – World Hypertension League Hypertension Monitoring and Evaluation Framework to aid Hypertension Control Programs; and the International Consortium for Health Outcome Measurement Adult Diabetes. She is a scientific advisor for the Gothenburg Person-centred Centre, University of Gothenburg, Sweden.