Understanding patient partnership in health systems: lessons from the Canadian patient partner survey

Abstract

ObjectivesTo examine the sociodemographic characteristics, activities, motivations, experiences, skills and challenges of patient partners working across multiple health system settings in Canada.DesignOnline cross-sectional survey of self-identified patient partners.SettingPatient partners in multiple jurisdictions and health system organisations.Participants603 patient partners who had drawn on their experiences with the health system as a patient, family member or informal caregiver to try to improve it in some way, through their involvement in the activities of a group, organisation or government.ResultsSurvey respondents predominantly identified as female (76.6%), white (84%) and university educated (70.2%) but were a heterogeneous group in the scope (activities and organisations), intensity (number of hours) and longevity (number of years) of their role. Primary motivations for becoming a patient partner were the desire to improve the health system based on either a negative (36.2%) or positive (23.3%) experience. Respondents reported feeling enthusiastic (83.6%), valued (76.9%) and needed (63.3%) always or most of the time; just under half felt they had always or often been adequately compensated in their role. Knowledge of the health system and the organisation they partner with are key skills needed. Two-thirds faced barriers in their role with over half identifying power imbalances. Less than half were able to see how their input was reflected in decisions or changes always or most of the time, and 40.3% had thought about quitting.ConclusionsThis survey is the first of its kind to examine at a population level, the characteristics, experiences and dynamics of a large sample of self-identified patient partners. Patient partners in this sample are a sociodemographically homogenous group, yet heterogeneous in the scope, intensity and longevity of roles. Our findings provide key insights at a critical time, to inform the future of patient partnership in health systems.

Evaluating the impact of engaging older adults and service providers as research partners in the co-design of a community mobility-promoting program: A multi-method developmental evaluation study

“…Across data sources, evaluation participants commonly mentioned the diversity of gender, ethnic, and disciplines among service providers as a strength of EMBOLDEN's SGC. Similar to other patient partner populations, most evaluation survey respondents were female and welleducated [55,56], but our results showed some diversity of age, and ethnicity and with some representation from visible minority; lesbian, gay, bisexual, transgender; new immigrant; and disability communities. This diversity is notable considering the lack of age, ethnicity, and birth country diversity among patient partner populations in Canada and the UK [55,56].…”

“…Interestingly, there was limited discussion of trust, and few concerns brought up about power-sharing by evaluation participants. This is notable considering that a recent Canadian study noted power imbalances as the most commonly experienced barrier for patient and public research partners working in health systems [55], and the emphasis in the literature on trust and the effort required to address power differences between researchers and research partners [67,68]. Previous research has shown that efforts to be inclusive, such as break-out groups, and an informal environment can reduce power differentials between researchers and research partners and increase trust [60,69].…”

Towards conceptualizing patients as partners in health systems: a systematic review and descriptive synthesis

“…We engaged in patient partnership in the current study, incorporating two research team members with lived experience of the healthcare system as caregivers and more saliently, a long history of working as patient partners (MAL, CC). MAL and CC are cofounders of the Patient Advisors Network, a national peer-led patient partner network [ 23 , 24 ]. The aim of involving patient partners was to ensure that our research was relevant and resonant with this stakeholder community.…”

“…CC participated in the origination of the idea and application for funding, and both MAL and CC attended research team meetings and provided regular written and oral feedback as the project developed. MAL and CC continue to participate in similar ways (strategic planning, operational and interpretive guidance) on the broader programme of research on patient partnership which this study involves, including a nationwide survey of patient partners and a qualitative study of patient partners and organizational staff who work with patient partners [ 23 , 24 ].…”

Development of the Engage with Impact Toolkit: A comprehensive resource to support the evaluation of patient, family and caregiver engagement in health systems

“…This may be reflective of the state of the patient and caregiver engagement field, where the considerable focus has been placed on the importance of engaging in an inclusive manner and in pursuit of equity goals, but significant gaps remain in turning principles into action. 21,22 We anticipate that this section of our toolkit will expand over time as more attention is paid to this area.…”