Understanding the motivations of patients: A co‐designed project to understand the factors behind patient engagement

Abstract

Background Large‐scale transformation depends on effective engagement of diverse stakeholders. With the evolution of the role of the ‘patient partner’ in health‐care decision making, understanding the motivations of these individuals is essential to the success of engagement initiatives. This study reports on motivational factors associated with patient engagement in health care. Methods Patient co‐investigators and a researcher co‐designed and conducted this study. A survey was administered to patients and family members. Key informant interviews and previous research informed the development of the survey tool. The survey data were analysed using exploratory factor analysis to identify the underlying dimensions in the data. Cronbach's alpha was used to determine reliability. Results A total of 1449 individuals participated in the survey. Of these, 543 completed and 427 partially completed the survey (67% complete rate). The mean age of the respondents was 54 years. The majority of participants were female, well‐educated, retired, married and lived in an urban centre. Seven motivational factors explained 65% of the total variance. Analysis of internal consistency revealed acceptable reliability for all items. The seven motivations were as follows: Self‐fulfillment, Improving Healthcare, Compensation, Influence, Learning New Things, Conditional and Perks. Conclusion The results of this research describe a sample of patient and family members currently engaged with health systems. We identified seven motivational factors underlying their engagement. A deeper knowledge of volunteer motivations will not only create meaningful engagement opportunities for patients, but also enable health organizations to gain from the experience of these individuals, thereby enhancing quality and sustainability of patient engagement programmes.

A co‐designed framework to support and sustain patient and family engagement in health‐care decision making

“…To support the development of the survey tool, 37 patient and family members, actively involved in roles such as patient and family advisors, were previously interviewed to understand why these individuals were involved in these roles 37 . Participants were asked to describe why they got involved, their perceived impact, contributions they had made and what they thought was needed to support their continued involvement.…”

“…Seven motivations resulted from the analysis of the survey: Self‐fulfilment , Improving Health care , Compensation , Influence , Learning New Things , Conditional and Perks . To provide additional context and understanding to the seven motivations and corresponding statements (thirty‐nine in total), derived from the analysis of the survey, 37 we asked workshop participants to describe what each motivation meant to them and provide an example. A summary of these findings is reported below.…”

“…The core research team met to develop the framework components. The team reviewed the findings from the scoping review, 38 the regional survey 37 and the regional workshops to draw out any emerging themes to support the development of the framework. After examining the transcripts from the workshops, the three phases of engagement were renamed: Why I got involved?…”

“…The purpose of the workshops was to inform the final framework by providing additional insight and understanding to the results of a regional survey 37 . Two target populations of interest were identified: (a) patient and family members involved with health organizations, such as patient advisors; and (b) patient and family engagement professionals, such as those working in the health‐care system in Alberta.…”

What motivates patients and caregivers to engage in health research and how engagement affects their lives: Qualitative survey findings

“…First, researchers can draw on the motivations and benefits identified in our study and others to communicate with potential partners about engagement opportunities and to develop engagement plans. Although researchers share some motivations with patients and caregivers, such as helping patients and improving care, researchers must recognize that some of their reasons for engagement, such as robust study enrolment and retention, may be lower priorities for partners .…”