Patient, family member and caregiver engagement in shaping policy for primary health care teams in three Canadian Provinces.

ABSTRACT

INTRODUCTION: Improving health services integration through primary health care (PHC) teams for patients with chronic conditions is essential to address their complex health needs and facilitate better health outcomes. The objective of this study was to explore if and how patients, family members, and caregivers were engaged or wanted to be engaged in developing, implementing and evaluating health policies related to PHC teams. This patient-oriented research was carried out in three provinces across Canada British Columbia, Alberta and Ontario. METHODS: A total of 29 semi-structured interviews with patients were conducted across the three provinces and data were analysed using thematic analysis. RESULTS: Three key themes were identified motivation for policy engagement, experiences with policy engagement and barriers to engagement in policy. The majority of participants in the study wanted to be engaged in policy processes and advocate for integrated care through PHC teams. Barriers to patient engagement in policy, such as lack of opportunities for engagement, power imbalances, tokenism, lack of accessibility of engagement opportunities and experiences of racism and discrimination were also identified. CONCLUSION: This study increases the understanding of patient, family member, and caregiver engagement in policy related to PHC team integration and the barriers that currently exist in this engagement process. This information can be used to guide decision-makers on how to improve the delivery of integrated health services through PHC teams and enhance patient, family member, and caregiver engagement in PHC policy. PATIENT OR PUBLIC CONTRIBUTION We would like to acknowledge the contributions of our patient partners, Brenda Jagroop and Judy Birdsell, who assisted with developing and pilot testing the interview guide. Judy Birdsell also assisted with the preparation of this manuscript. This study also engaged patients, family members, and caregivers to share their experiences with engagement in PHC policy.