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.


| BACKG ROU N D
Large-scale health-care transformation requires the effective engagement of all stakeholders across the entire health system, including providers and patients. 1,2 Even though patient engagement has gained attention as an approach to improving the quality, safety and service delivery of health care, uncertainty still persists about if, why and how to involve patients in effective and meaningful ways. 3,4 Coupled with a lack of evidence, initiatives to engage patients in health-care decision making are infrequent and have also demonstrated limited success. [5][6][7][8] Accordingly, more knowledge is needed with respect to effective approaches to attracting and sustaining patients' participation in health-care decision making. [9][10][11][12] For the purpose of this manuscript, a stakeholder is defined by persons involved with or affected by a course of action. 13 In this manuscript, we focus on the central stakeholder in health care, patients and family members.
Motivation is defined as the force that occurs when a need is aroused that an individual is driven to satisfy. [14][15][16][17][18] The measurement and exploration of volunteer motivation is not new to researchers. [19][20][21][22][23][24][25][26] Many scholars have applied a variety of theories to attempt to understand why people volunteer. [27][28][29][30][31][32][33] A deeper understanding of these motivations, specific to health care, will not only advance the development of effective strategies for patient engagement but also inform approaches to measuring the impact and overall effectiveness of these initiatives. Recognizing that people often pursue multiple, competing goals, they not only strive to achieve the desired outcomes but also attempt to maximize the value they receive. 34 Since individuals have limited time and resources, they often have to choose what choice to prioritize. Simply speaking, individuals initially form a 'consideration set' consisting of 'alternatives from which choice is made', 35 , p. 522. These choices are complex and unique to the individual making them. [35][36][37] The market choice behaviour (MCB) theory is the amalgamation of conceptual frameworks drawn from economics, psychology, sociology, marketing and consumer behaviour. Sheth et al postulate that this theory explains consumer choice behaviour. 14,15,27,28,36,38,39 MCB is universal and central to this decision making is the allocation of three precious resources: money, time and effort. Since we are interested in understanding the motivations of people who engage with health-care organizations to inform a patient engagement framework, we can use this theory to understand how individuals make time allocation choices. 36 The Patient and Family Advisory Group (PFG) in Alberta, Canada, was formed in 2010 with the purpose of enhancing the patient experience by improving the quality and safety of patient care. Since this time, opportunities for individuals to assume roles as 'patient advisors' have evolved and are continuing to evolve, not only within Alberta Health Services, but also in other health organizations such as the Health Quality Council of Alberta. 40 These individuals, serving in various roles, engage in decision making opportunities, in not only service delivery but also other health-care transformation activities, including governance. These individuals primarily 'volunteer' their time. However, some individuals receive stipends, honoraria and expense reimbursements. Understanding how and what motivates these individuals is currently unknown. Using MCB as a theoretical framework to guide the development of the survey, this study will understand the motivations of individuals engaging with health organizations in various roles such as patient advisors. This paper reports on the findings of a provincial survey to understand patient motivations and, second, provides the foundation for the development of a framework for patient motivation.

| Co-design and patient co-investigators
This study utilized a co-design methodology, wherein individuals who share an interest in the outcome of this research, in this case the patient and family community, were involved in the design and delivery of the research, from project inception to final analysis and write-up. 41,42 These patients were selected based on their prior experiences and ability to commit to the project. Three patient co-investigators and the first author formed the project team.

| Sampling strategy
We began with the assumption that 'patient partners' exist in many organizations, and can assume a myriad of roles including advocate, TA B L E 1 Participating organizations advisor and volunteer. To ensure a diverse sampling strategy, and facilitate provincial-wide participation, we compiled a comprehensive list of all organizations in Alberta, Canada, known to have patient engagement programmes. We then snowball sampled from among key informants, with organizations identifying other individuals, such as Alberta Children's Hospital and the Health Quality Council of Alberta (see Table 1). These key informants were asked to assist in recruiting participants within their respective organizations. Participants were included if they self-identified as having experiences participating in engagement programmes (eg, as a patient advisor with Alberta Health Services), were fluent in English, lived in Alberta and were over 18 years of age.

| Ethics approval
This study was approved by the Conjoint Health Research Ethics Board (CHREB) at the University of Calgary. Possible participants were given background information about the project and the purpose of the study. Individuals were also encouraged to contact the researchers if they had any questions prior to participating.

| Patient and family interviews
To support the development of the survey tool, individuals with prior experience partnering with one of the organizations of interest were recruited, using purposive sampling, and were selected based on their experiences as a patient or family member. An interview questionnaire was developed to understand the underlying motivations of individuals in deciding to get involved, the perceived impact they had, contributions they felt they had made, and what they thought was needed to support their continued involvement. Twenty-three semi-structured interviews, with an open-ended question style, lasting an average of 1 hour, were conducted between May and December 2017. Each of the interviews was analysed using a modified constant comparative method developed by Glaser. 43 This required a side-by-side comparison and analysis of the transcripts from each of the interviews to determine common themes.

| Survey development
The survey was developed in collaboration with the research team and structured to facilitate a broader understanding of the motivations of patients and family members. 44 The interviews, previous studies focusing on volunteer motivation and the results of a scoping

| Survey pilot testing
Prior to launch, a convenience sample of five patient and family members tested the survey tool. Each reviewer was asked to assess the relevance and quality of each item, and to identify unnecessary or ambiguous questions (including clarity, relevance, flow and wording). 44 The survey took approximately 20 minutes to complete.

| Survey instrument
The

| Survey administration
The survey was administered online, using a tool called REDCap, 46 Are you able to participate in an online survey that would take approximately 20 minutes to complete? Information on the study was distributed by key informants to possible participants using email, electronic newsletters or through the organization's websites or social media accounts. No patient contact information was shared with the research team. A poster was also developed with similar information as the email so that this opportunity could be displayed on notice boards when requested. Paper copies of the survey were made available upon request, and mailed, with a self-addressed stamped envelope, to individuals wishing to participate offline. The survey was posted for 7 weeks. On three occasions, participating organizations were asked via email to remind potential participants of the study: after the second week, the final week and the last day.

| Data analysis
Survey data were analysed using a statistical analysis program (SPSS 25 48 We chose to use principal axis factoring as our extraction method in an attempt to identify the underlying dimensions of the data. [49][50][51] In order to determine whether we should conduct factor analysis, four key pieces of information were considered: the sample size 50,52-54 ; the correlation matrix [53][54][55] ; the Kaiser-Meyer-Olkin test of sampling adequacy, 56,57 , p. 112; and Barlett's test of sphericity. 58 Since the purpose of our research was to identify items that were strong indicators of patient motivation, we decided to remove communalities with magnitudes <0.4 50,55 ; factor loadings with <2 variables 50,55 ; and variables that cross-loaded. 50,55 Although the minimum acceptable standard for factor loadings is typically 0.32, to improve factor interpretation we elected to define a cut-off >0.50. 55,59 Guttman-Kaiser's criterion, a Scree test and the proportion of variance assisted in determining the number of factors to retain. [60][61][62][63] Varimax and direct oblimin produced similar solutions, so we reported data from the varimax rotation. 49,50,52,53,55 The internal consistency of the scale items was established using Cronbach's alpha (α). 52,64

| Patient and family interviews
Analysis of the patient and family interviews revealed three distinct themes that describe a path for patient and family engagement.
These three themes, the recruit theme (why participants got involved), the retain theme (why participants continue to be involved) and the sustain theme (what participants need to strengthen their involvement), informed the structure of the survey, and questions were developed to better understand the motivations at each of these themes (see Supporting Information for the survey).

| Characteristics of survey respondents
A total of 1449 individuals participated in the survey. Of these, 543 completed and 427 partially completed the survey (67% complete rate). All returned surveys, including partially completed surveys, were analysed. In order to accurately capture the motivations of individuals currently engaged as 'patient partners', participants who indicated they were 'no longer involved' or 'currently taking a break' (question 2.2) were removed from further analysis (n = 114). The remaining respondents self-identified as actively involved in their roles (n = 856). These active participants had an average age of 54 years, with the youngest being 18 and oldest being 91 years of age. These individuals were primarily female (n = 393, 80%), retired (n = 208, 34%), married (n = 288, 59%) and living in an urban centre (n = 299, 63%). Respondents were well-educated with 29% (n = 143) having an undergraduate degree, 29% were college-educated (n = 142) and 18% had a graduate degree (n = 89). Thirty-three percent of respondents (n = 164) indicated they were former health-care employees (see Table 2).

| Active participant roles
When asked what role best described them, 63% of respondents (n = 539) identified themselves as a 'volunteer'. When asked how they heard about their role, 32% of respondents (n = 240) indicated they searched out the opportunity themselves and 18% (n = 131) indicated a friend or family member told them about it. When asked how they learned about what was required of them for the role, 25% (n = 282) of respondents participated in training and an additional 25% (n = 285) indicated they participated in a selection process.
When asked, on average, how much time they spend in their role, respondents indicated they volunteered an average of 16 hours/wk, with the average tenure in their various roles of 4 years. Seventyseven percentage (n = 461) of respondents indicated that, if asked, they would be willing to give more time to their roles. When asked whether they would like to continue in their current roles, 98% of respondents (n = 489) answered 'yes' (see Table 2).

| Participant experience
When asked how they felt about their role, 53% (n = 324) of respondents strongly agreed that they feel 'interested', in their role as a patient partner. Fifty percent (n = 316) strongly agree they experi- percentage of respondents also 'strongly agreed' that the role gave them a sense of 'frustration' (n = 12, 2%) and 'aggravation' (n = 8, 1%; see Table 3).

| Patient motivations
The factor loadings and the corresponding variables within their factor loadings can be found in Table 4. Seventeen variables were removed from our analysis: ten as a result of low communalities; four to poor factor loadings; and three to cross-loadings.
Analysis of internal consistency using Cronbach's alpha revealed acceptable reliability for all seven motivations: Self-fulfillment and Perks (0.826) (see Table 5).

| Self-fulfillment
The self-fulfillment motivation includes nine variables. These variables can be organized into four categories: helping others (v77, v96 and v101), the overall gratification received from the opportunity (v76, v91, v99 and v107), meaningful connections (v95) and a sense of purpose (v114).

| Improving healthcare
The improving healthcare motivation includes seven variables. These motivations are defined by the desire to improve the health-care  (17) College 142 (29) University-Bachelor 143 (29) University-Graduate 89 (18) None 0 (0) Prefer not to answer 9  v39, v43, v48, v79), to improve the current culture of health care (v49) and to speak for those who are not able to speak for themselves (v51).

| Compensation
The compensation motivation is unique as it is an example of individuals being motivated financially. Monetary in nature, this motivation can be in the form of a stipend or honorarium (v34, v35, v42, v80, v103 and v110). This motivation includes six variables.

| Influence
The influence motivation defines the ability of an individual to affect change and to have a perceived impact on the health system, or the health-care professional or decision maker with whom they work.
This motivation includes five variables which describe being listened to (v86), the ability to impact decisions (v88 and v93) and the ability to be a proponent for change (v89 and v90).

| Learning new things
The learning new things motivation describes an individual's desire to learn and continue to learn new things. It includes four variables (v38, v44, v81 and v115).

| Conditional
The conditional motivation is contingent on the specific situa- could decline to participate in a face-to-face meeting due to the need to travel. This motivation has five variables and is described by the need for flexibility such as 'you can work from home' (v122 and v125) and the potential scenarios for the role such as 'the role could turn into a paid position' (v124, v127 and v128).

| Perks
The perks motivation has three variables and is another example of being motivated by extra benefits beyond being financially compensated. Perks include things such as having expenses paid (v84 and v116) or being supported to attend conferences (v111).
These seven factors represent the underlying motivations of engagement for a sample of patient and family members currently engaged with health systems in Alberta.

| D ISCUSS I ON
We undertook this study to better understand the motivations of in- can be influenced by one or all seven identified. 36 We found the Self-fulfillment motivation primarily focuses on an individual's desire to find purpose, 25,[75][76][77] to make connections 19,21,76,78,79 and to help others 22,32,74,79 all while simultaneously benefiting from the experience. 75,78 The Improving Healthcare motivation highlights an individual's desire to 'fix' the health-care system by improving not only the quality and service delivery 74,80,81 but also perceived cultural challenges that are key to health-care transformation, such as a lack of trust between patients and health-care providers. [82][83][84] The Influence motivation reflects an individual's ability to impact decisions, and to feel as though others are listening to them. The prestige of being associated with the health organization and associated feelings of pride (not only with themselves but with the work they are doing) further define this motivation 76,77 Having influence is key to the overall tenure of an individual's involvement in these initiatives. The Learning New Things motivation is fairly common in the volunteer literature and is primarily focused on an individual's desire to be exposed to new experiences and to have the chance to exercise knowledge, skills and abilities that might otherwise go unpracticed. 19,25,75,76,78 The Conditional motivation describes how an individual makes a decision to participate, given a set of circumstances. 36 For example, an individual who is unable to drive may find significant value in being able to participate in meetings held via teleconference. The decision to participate can be described as a balanced process where individuals weigh the potential benefits and risks of engaging in these endeavours. 85 While our results generally support the findings in the literature, we did find some notable differences, specifically with respect to the Compensation and Perks motivations. Compensating individuals as research subjects occurs in some studies such as clinical trials. 86,87 It is also common for research studies to incent participation by of-

| CON CLUS ION
While significant research exists that highlights the motivations of people who volunteer, a limited number of studies have explored these concepts within health care. This study reports on the results of a provincial survey, describing a sample of patient partners currently occupying various roles within Alberta health organizations. We were able to identify seven motivations, which can be incorporated into a framework to explain and support future patient engagement initiatives. As the roles of patient and family advisors in the context of health care decision making continue to evolve, the importance of effective and sustainable engagement programmes will become increasingly important. The results of this study suggest that further research is needed to support the engagement of diverse groups of stakeholders, such as healthcare professionals and patient and family members, to assist in large-scale health transformation. A deeper knowledge of patient motivations will not only create meaningful engagement opportunities for patients but will also enable health organizations to gain from the experience of these individuals. While further research is needed, the findings from this study have developed a preliminary understanding of the motivations of patients who engage in health care decision making.

ACK N OWLED G EM ENTS
None.

CO N FLI C T O F I NTE R E S T
The authors declare that they have no competing interests.

AUTH O R S ' CO NTR I B UTI O N S
TLM had significant involvement in the design, acquisition, analysis and interpretation of data. TN, NM, DH, DW and DL provided guidance in the overall design and delivery of the research. KM, SZ and GW were involved in the acquisition and final analysis. All authors provided revisions and the final approval to be published. All the named authors agree to take accountability for the integrity and accuracy of the work and have read and approved the final manuscript.

E TH I C A L A PPROVA L
The ethics approval for the following research has been approved by the Conjoint Health Research Ethics Board at the University of Calgary.

DATA ACC E S S I B I L I T Y
All data generated or analysed during this study are included in this published article.