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

Abstract Background Patient and family engagement in health care has emerged as a critical priority. Understanding engagement, from the perspective of the patient and family member, coupled with an awareness of how patient and family members are motivated to be involved, is an important component in increasing the effectiveness of patient engagement initiatives. The purpose of this research was to co‐design a patient and family engagement framework. Methods Workshops were held to provide additional context to the findings from a survey. Participants were recruited using a convenience sampling strategy. Workshop data collected were analysed using a modified constant comparative technique. The core research team participated in a workshop to review the findings from multiple inputs to inform the final framework and participated in a face validity exercise to determine that the components of the framework measured what they were intended to measure. Results The framework is organized into three phases of engagement: why I got involved; why I continue to be involved; and what I need to strengthen my involvement. The final framework describes seven motivations and 24 statements, arranged by the three phases of engagement. Conclusion The results of this research describe the motivations of patient and family members who are involved with health systems in various roles including as patient advisors. A deeper knowledge of patient and family motivations will not only create meaningful engagement opportunities but will also enable health organizations to gain from the voice and experience of these individuals, thereby enhancing the quality and sustainability of patient and family involvement.


| BACKG ROU N D
Without additional funding or the adoption of innovative approaches to service delivery, existing health-care systems are unlikely to remain sustainable. 1 Facing this challenge requires the meaningful involvement of multiple stakeholders across the entire health system, with particular emphasis on the recipients of care. 2 Despite its importance, understanding 'how' best to involve patient and family members in decision making within all domains of health care remains unclear. 3,4 To date, research on effective and sustainable patient and family involvement is both scarce and has shown limited success in demonstrating or measuring impact. 5,6 Coupled with little guidance based on evaluative research on how to effectively involve patients, decision makers looking to draw transferable lessons to inform the design of meaningful patient engagement programmes and processes are largely absent. 7,8 Recognizing that individuals are motivated to satisfy needs and to maximize the value they receive becomes important to the effectiveness and sustainability of initiatives that involve patient and family members in health-care decision making. [9][10][11] Many health organizations in Alberta, Canada, such as Alberta Health Services, involve patient and family members in various roles, such as advisors or partners who participate in governance, in-service healthcare delivery and other decision making activities. As described by Carman, higher levels of engagement are described by greater involvement, increased sharing of power and increased responsibility. 12 Research on motivations is not a new area of discovery; however, understanding the motivations of stakeholders in health care, specifically why patient and family members are motivated to get involved and continue to stay involved, is largely unexplored. [13][14][15][16][17][18][19][20][21][22][23] To inform our process, we used the market choice behaviour (MCB) theory, as a theoretical base, for its ease of use and as a recognized theory explaining how individuals are motivated to make choices. 10,11 The MCB theory draws from disciplines such as psychology and sociology and recognizes that individuals have limited time and resources, which compete with choices, such as getting involved or not. [10][11][14][15][24][25][26][27] The MCB theory identifies five values that independently influence an individual's choice behaviour: (a) functional; (b) conditional; (c) epistemic; (d) social; and (e) emotional. 11 Since these values are independent of each other, the choice behaviour can be influenced by one or all five values. 10,11 In Canada, the term patient engagement is defined by the Canadian Institutes for Health Research, (CIHR) as the meaningful and active collaboration in activities such as governance and research ( 28, p. 5 ). 'Patient' is an overarching term, inclusive of individuals with personal experience of a health issue such as caregivers, family and friends. ( 28, p. 5 ). Acknowledging the concept of co-design is still evolving, that co-creation, co-production and co-design have evolved independently in different disciplines and are often confused and treated synonymously with one another, and we used key learnings, informed by the literature, to support how we worked together during this project. [29][30][31][32][33][34] For the purposes of this study, since we were exploring the motivations of patients at the higher levels of engagement, we felt co-design was an appropriate way to work together. We define co-design as the core research team, consisting of three patient co-investigators and a researcher, working together, challenging themselves to work in partnership, to engage in shared leadership and shared decision making throughout the entire project.
The patient and family members, who acted as co-investigators, were recruited using a convenience sampling strategy. 35  This manuscript reports on the findings from four regional workshops convened to provide additional context to a regional survey 37 and interviews with patient and family members and describes the process used to develop a framework to explore and understand the motivations for patient and family engagement.

| ME THODOLOGY
A regional survey, informed by a scoping review 38 and interviews with patient and family members, was analysed to understand the motivational factors of individuals who engage in health-care decision making. 37 Multiple inputs informed the patient and family engagement framework including the following: the results of a regional survey, 37 interviews with patient and family members 37 and four regional workshops (described below). See Figure 1. Workshop participants were recruited using a convenience sampling strategy, 35 and data were analysed using a modified constant comparative technique. 39 A final co-design workshop was held with the core research team to review the data from the survey and workshops. Below, we describe the methods used to support the development of the final framework.

| Recruitment for regional workshops
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.
Patient and family engagement professionals were individuals who worked within health organizations and are responsible for designing and delivering engagement programmes in the region. Engagement professionals were included in the workshop to raise awareness of the findings from this research and assist with the contextualization and dissemination of the final framework.
A convenience sampling strategy was used to identify participants for the workshops. 40 Patient and family members who had previously responded to a regional survey 37 were contacted by email and asked whether they wished to participate in a future workshop.
A comprehensive list of organizations with patient and family engagement programmes was identified during the survey phase, 37 and individual organizations were contacted by phone to provide a patient engagement professional able to participate in one of the workshops.

| Regional workshops
Four, 4-hour workshops were held in June 2018 in Alberta, Canada.
Locations were chosen to ensure a balanced participation from both urban and rural participants. The sessions were facilitated by the core research team. One month prior to the workshop, project consent forms were emailed to participants. An email was sent 2 weeks prior to the workshop with an agenda and overview of the research project. As participants arrived for the workshops, the core research team assigned individuals to each table. The composition of the groups was deliberately structured to limit the number of engagement professionals at each table, thus minimizing the power differentials between participants. 41

| Data collection and analysis
The workshops began with an overview of the research project, followed by highlights from the results of the scoping review 38 and survey results. 37 Participants then engaged in semi-structured largegroup and within-table discussions that were guided by a series of open-ended questions, formulated to provide additional context to both the path of engagement, described during the patient and family interviews, (recruit, retain and sustain) and to the seven motivations identified as a result of the analysis of the regional survey. 37 The sessions were audio-recorded and analysed using a modified constant comparative method developed by Glaser. 39 This required that the core research team complete a side-by-side comparison and analysis of the transcripts from each of the workshops to determine common themes. 39,42 Analysis continued until each theme was fully described and supported by data from the workshops.

| Developing the patient and family engagement framework
On completion of the workshops, the core research team convened to synthesize the findings from the workshop and decide on the components and overall design of the framework. During this meeting, the draft of the framework was developed. Two weeks later, the patient and family co-investigators participated in a face validity exercise where they attempted to subjectively determine the extent to which the components of the framework appeared to measure what they purported to measure. 43 Any disagreements were resolved by achieving consensus through discussion. All meetings were facilitated by the primary author.

| Understanding the phases of engagement
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. These interviews revealed a distinct path for engagement, defined by three phases: recruit, retain and sustain. To provide additional context and understanding of these three phases, we asked workshop participants to describe what each phase meant to them and provide an example. A summary of these findings is reported below.

| The 'recruit' phase
This phase defines the initial period when the individual makes the decision to get involved. Workshop participants felt that the initial recruitment phase was a complex process, unique to each individual and synonymous to establishing a new relationship (in this case a the relationship between patient and family member and the health system). The initial 'courting' stage occurred when an individual either personally experienced the health-care system or experienced it on behalf of a loved one. This experience, positive or negative, in combination with the ability to find opportunities to become involved, such as the patient and family advisor role, is how participants described their initial engagement. 'This process is a two-way street. I have to have a desire to get involved and there has to be an opportunity to give input' (YEG-04).

| The 'retain' phase
Participants describe this phase as why people stay involved.
Participants shared the importance of being valued, or participating in something that was perceived as meaningful, as their reason for continuing in their role. Meaningful engagement was described by participants as the perception that the organization 'valued their contributions' (YYC-03). Participants felt value was evident 'when organizations report back' (YYC-03) and when they could see their contributions were 'making an impact' (YQU-05). Others described meaningful as being 'respected' (YYC-01) and having influence. 'I wouldn't be involved if I didn't think I was making a difference' (YEG-03). Being 'recognized' helped to further solidify meaning by making individuals feel less like a 'token' and more 'like a partner' (YQL-01).
An opportunity to 'be with others and to develop productive and mutually beneficial relationships' helped people to feel welcome and to find meaning in their engagement (YQU-03). Attending conferences and participating in other learning and development opportunities further enhanced the value for participants. 'The learning is important. It allows us to start seeing the bigger picture and we start to feel like we are contributing to change' (YQL-03).

| The 'sustain' phase
Participants describe this phase as the support needed to continue their involvement. Many factors were described as key to the overall success of these patient and family engagement programmes.

| Understanding patient and family motivations
A provincial survey was previously administered to understand the motivations of patient and family members currently engaged with health systems. 37 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.

| Self-fulfilment
Participants described this motivation as the most complex and was primarily focused on an individual's desire to find purpose, to do something meaningful, to establish productive and rewarding connections; it was rooted in a sense of obligation and driven by the desire for the gratification provided by the opportunity itself such as participating in an activity to help others. Participants felt it was important that individuals were recognized for their contributions and that they felt there was a benefit from being involved. See Table 1.

| Improving Health care
Participants described this motivation as an individual's desire to fix the health-care system by improving not only the quality and service delivery but also the internal culture such as the perceived attitudes of physicians towards patient and family members. Participants felt TA B L E 1 Understanding motivations by themes from the workshops from the perspective of the workshop participants Motivation Quote

Self-fulfilment
Purpose [I am motivated to make] 'the health care system better by making it easier for the next person' (YYC-10).

| Compensation
Compensation, in this context, was described by participants as beyond the payment of expenses and included monetary recognition that acknowledged an individual's time and talents. It was important to participants for comparable recognition to other individuals doing similar tasks. This motivation was embedded in how patient and family members measure the value of what they bring to the project and is seen as a mechanism to encourage participation. Participants overwhelmingly wanted to be given a choice as to whether they would receive compensation or not. See Table 1.

| Influence
Participants described this motivation as an individual's ability to impact decisions and to feel as though they were being heard and considered as a partner by other health-care professionals.
Participants felt this motivation was further enhanced when their perspective was acknowledged and valued by senior health professionals and others who could affect change. See Table 1.

| Learning new things
This motivation described an individual's desire to be exposed to new experiences and to have the opportunity to exercise knowledge, skills and abilities that might otherwise go unpractised.
Learning enhanced participant's personal value and provided meaning to individuals outside of their formal role. Participants were passionate about this motivation and described it as key to their ability to be effective and an important enabler for change. See Table 1.

| Perks
Participants described this motivation similar to compensation, but rather than being financially rewarded, individuals were motivated by extra benefits such as expense reimbursements or opportunities to attend conferences. These experiences provided additional advantages to individuals such as growing and developing personal and professional relationships and connections. See Table 1.

| Conditional
The conditional motivation for participants was contingent on the specific situation faced by the individual. This motivation enhanced the choice, to participate or not, by increasing the per-

| Part 2: Designing and validating the patient and family engagement framework
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  TA B L E 2 (Continued) a regional-wide survey and four regional stakeholder workshops, This research is unique in that we used a consumption value framework from marketing in a health-care setting. 10,11 Our results confirm the findings from the motivational literature with some no- represented in our results. 10,11 Compensation is an example of a functional value driven by the desire to satisfy a need, in this case being paid. 10,15,25,27 Individuals motivated by compensation are seeking to fulfil a financial need (removing barriers to participation) or to fulfil the need to be recognized by others (being paid is an acknowledgement of the patient/family member's contribution as a partner).

F I G U R E 2 A Co-designed framework to support and sustain patient engagement
Learning New Things is an example of an epistemic value. This motivation is driven by the need for an opportunity that provides novelty, arouses curiosity or satisfies knowledge. 10 important to provide consistency. We acknowledge that the patient and family co-investigators were female, and a more diverse team may have resulted in additional insights that could have further enhanced the framework. Fifth, this work focuses on the motivations of patient and family members. We acknowledge the importance of involving diverse groups of stakeholders, including clinicians and other health-care professionals, and encourage future studies to explore the motivations of these groups to support effective and meaningful involvement. Sixth, neither the primary researcher nor patient and family co-investigators are qualitative researchers. A robust qualitative analysis using grounded theory or phenomenology may have provided additional context to our findings.
Given the current interest in patient and family engagement, coupled with the promising results of these findings, additional research in this area should be encouraged. The framework identifies the values of patient and family members that are significant to their decisions to get and stay involved. This information could prove to be exceptionally valuable to health systems wanting to involve patient and family members. Secondly, the framework lends itself to the development of strategies to support and sustain patient and family involvement. The MCB theory assumes individuals are making decisions for themselves about whether they will be involved or not, and on that understanding, motivations important to vulnerable and hard to reach populations are likely present within this framework, but more work should explore this hypothesis. [10][11]25 Finally, the iterative process utilized in this study, with a team consisting of a researcher and three patient and family co-investigators, and the involvement of key stakeholders at various stages of the project, could be a highly productive and meaningful model for those wishing to conduct health research and should be further explored.

| CON CLUS ION
While significant research exists that highlights the motivations of the public who choose to participate in decision making, a limited number of studies have explored these concepts within health care. This programme of work describes the process used to co-design a patient and family engagement framework founded on a theoretical base, informed by the available evidence base, a regional survey, and deepened and clarified by a series of stakeholder workshops. The framework is comprised of seven motivations and three phases of patient and family engagement. As the roles of patient and family members in the context of health-care decision making continue to evolve, the importance of effective and sustainable engagement programmes will become increasingly important. A deeper knowledge of patient and family motivations not only will help to create meaningful engagement opportunities for patient and family members but also will enable health organizations to gain from the experience of these individuals. While further research is needed to support diverse groups of stakeholders, the findings from this study have developed an understanding of how patient and family members are motivated to make decisions about their involvement.

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