Attending patient engagement events
Patients who participate in patient engagement may experience barriers to participating and incur direct costs (e.g., childcare and transportation) and opportunity costs (e.g., missed social or work opportunities). Such costs increase when patients are involved in extensive engagement experiences. Engagement facilitators may attempt to minimize the costs of participatinghowever, minimizing costs and barriers is not sufficient. Participation costs are relative to an individual’s social location, including, for example, gender, income, and employment status, which in turn shape the resources they can draw from to participate.
Authors noted all engagement processes require time commitment from participants, though amount of time, and other direct and indirect costs of participating, vary across engagement processes. One-time events drew a large number of participants from diverse populations [
18,
19], while many people did not participate in or dropped out of engagement processes involving recurring events, citing time and responsibility commitments as barriers [
18,
20‐
22].
Barriers also varied by dimension of marginalization and participant’s life context. Low socioeconomic status seemed to be associated with greater barriers to participation, due to higher opportunity costs on their ability to meet basic needs (e.g., accessing free meals, shelter, and temporary work).
The setting of engagement events also presented barriers. Some participants were physically incapable of getting to events due to disabilities [
23]. Others felt uncomfortable in formal and unfamiliar spaces, such as academic setting [
24]. In other cases, discomfort came from distrust of institutions associated with the location (such as criminal justice systems) [
19]. Finally, language was a barrier for many, and interpreter or translator costs often are seldom covered by engagement budgets [
25].
A primary strategy to help marginalized people attend engagement events was to reduce the cost of participating by providing childcare, transportation stipends, honoraria, and food [
18‐
21,
25,
26]. Some processes were flexible about meeting locations and times [
20‐
22,
25]. Several projects sought to overcome participation barriers by working with community groups [
20,
23,
26,
27] which helped facilitators gain access to marginalized groups and allowed them to learn about the community’s needs and necessary considerations for successful engagement [
15].
Some successes in more intense participation came through engagement processes built into interactions between patients and practitioners, particularly in community-based services with recurring interaction with patients [
28‐
31]. In these processes, there were no additional costs to attending an engagement event beyond seeking care and patients could directly benefit from changes to services. The success in engaging vulnerable patients may be due to patients’ trust in the provider and reduction of access barriers however, by relying on current patients for participation, such processes inherently exclude those not already accessing services. Projects focused on engaging women used a variety of strategies to overcome barriers such as providing childcare and having flexible meeting options to accommodate women’s schedules [
18,
19,
22,
25,
29].
Patients also need motivation to participate. The literature suggests that people need more motivation to attend processes requiring higher commitment and participation costs. Generally, people are motivated by issues relevant to their lives or the belief they will benefit from participating. As with engagement costs, perceived relevance and value of participation is shaped by social location.
Across all categories of engagement, participants were motivated by opportunities to improve health services for themselves and others [
18,
21,
23]. When cost of participation was minimal, such as during consultations, interest in improving the system and having one’s voice heard was sufficient motivation [
18,
19]. At increasing levels of engagement however, benefits needed to be more direct to motivate people. Projects identified as being at the levels of collaboration and empowerment, which required intense commitment, tended to have a more direct impact on participants, either through changes to health services or a benefit gained through participating, such as gaining new skills.
Most projects, particularly those involving more intense levels of engagement, engaged participants on issues related to a specific health service. Participants were recruited from the service and patients were motivated to participate because they had opportunity to directly impact these services and therefore their own lives [
21,
26,
28‐
32].
Engagement projects in which outcomes of engagement had a more distant or abstract effect motivated participants with other benefits. These benefits included empowerment and increased confidence [
23,
26], meeting new people, gaining skills that could apply elsewhere, including employment [
21,
23,
25], reducing isolation, developing community networks and furthering personal growth and employability [
21]. However, these benefits may not be sufficient to motivate economically marginalized populations who are struggling to meet basic needs.
Meaningful participation
Even when people are motivated to participate and to overcome barriers to attending an engagement event, patients experience barriers to communicating their preferences, needs, and values to health service planners. Many of these barriers lie in the location of power in engagement processes, which affects whether certain groups of people participate, how they participate, and how their participation is legitimized as knowledge to inform healthcare decisions. Meaningfully engaging diverse populations therefore begins by specifically addressing power dynamics among various participants and between facilitators and participants.
Power dynamics between facilitators and participants shape how knowledge is generated, how problems are defined, and what ideas inform healthcare decision-making [
11,
18]. Participants may not contribute their lived experience as evidence when issues are defined by facilitators instead of patients and “expert” evidence is privileged. Some participants believed facilitators had power over their health care and worried giving negative feedback could negatively affect their care [
23]. Others felt facilitators represented mistrusted institutions, leading them to be less honest about their values, preferences, and needs [
21] or to be skeptical of the engagement process [
23]. Several articles described professionals’ tendency to dominate engagement events through their use of formal language [
21] or simply by being present because other participants tended to believe professionals were the most knowledgeable about the subject [
22].
There were a variety of ways facilitators supported participants to contribute. Most importantly, meaningful patient engagement was built on a foundation of trust, through which participants felt safe and comfortable to participate. Trust was particularly important in projects focused on sensitive issues, such as mental health and sexual health. Strategies to enhance trust included: limiting the presence and contribution of professionals (including decision makers and participants who are contributing professional opinions) [
21,
22]; creating environments that normalize people’s life-context by surrounding them with people who have similar backgrounds and experiences [
18,
19,
25]; and providing opportunities for people to build trust with other participants prior to sharing sensitive information [
18,
19].
After laying this foundation, engagement processes should reinforce trust and safety while empowering participants. Several common strategies were used, including processes that gave participants the power to name and define issues that were important to them [
20,
23,
24], explicitly prioritizing and legitimizing lived experiences as a form of evidence [
22,
27], supporting women to contribute in a variety of ways, and acknowledging their contributions [
21,
23,
25,
28].
Attending patient engagement events
Patients confirmed the barriers to participating in engagement due to direct costs of participation, such as time and transportation, and opportunity costs, such as lost social or work opportunities. Women with young children particularly faced challenges, such as cost of transportation for themselves and their children, and challenges making appointments. Providers who worked with marginalized women echoed that many of their clients face challenges organizing schedules and getting to appointments on time.
Participants stated their motivation to engage arose from their perception that they would personally benefit, echoing themes from the literature. In addition, many said they were motivated by giving back to the community and feeling like their voices would be heard:
“I think for me, my input is very important. My words are important. That’s all I got.” (Patient participant in focus group).
The importance of being heard and respected was expressed most frequently by marginalized women who had experienced discrimination from some healthcare providers, yet whose lives had been positively impacted by compassionate or empowering healthcare providers. They said monetary incentives were useful and drew their attention, yet remuneration was less important than feeling like they would have an impact on health services. This underscores the importance of patient engagement being authentic and health service planners listening to patients and addressing their concerns as much as possible.
“In the future, we want a better system for our sons, for our family.” (Patient participant in focus group).
“So if we’re actually told that we were going to be heard, and that our opinions mattered, would make us be able to move forward, because a lot of the times, okay, you’ll put it towards us. “Okay, yeah, we want your input,” but that’s about it, right?” (Patient participant in focus group).
Health services planners held similar views. One informant who worked with Indigenous populations stated, “if you're going to ask the opinion and engage community, you have to be willing to go to bat for them later to make the change and advocate for the change.” (Planner for Indigenous health services).
Both planners and patients were clear about the importance of valuing patients’ participation, being clear about how exactly patients voices were contributing to their programming, and doing what they said they said they would do.
Planners also motivated people to participate by providing patients services they were not otherwise able to afford, such as hairdressing. Finally, they found patients to be highly motivated to engage in relation to issues directly impacting their lives, such as changes to health services they receive.
Consistent with the literature, individuals reported feeling uncomfortable approaching new settings, such as new health care providers, due to a lack of trust and confidence, and even fear. These women would likely have a similar reaction to attending patient engagement in an unfamiliar setting. Planners discussed the value of working with community agencies that had relationships with the community in order to increase potential participants’ comfort and decrease their fear in the process. For example, they stated the value of recruiting participants through personal invitations from community providers and holding engagement events in the community agency’s location, where patients are already comfortable:
“For many of those groups it's about building the relationship with the people who support them in various places and having them do a one-to-one. ...And the personal ask from the providers who knew those women was the only thing that got them there, because then they could authenticate it. They got asked, so it meant that they were important and that their voice was important.” (Coordinator for Community Health service)
Furthermore, several providers who worked in community health centres described success with engagement by making it part of the organizational culture and conducting ongoing patient engagement, formally and informally, to gain patients’ input in service decisions. Informal engagement enabled providers to gain input from a diversity of voices, not just those individuals who were most interested in participating.
Meaningful participation
Planners elaborated on the themes of power and the purpose of engagement in relation to how patients express their lived experiences and how planners understand these as evidence in the planning process. They advised caution in deciding on topics of engagement and the way patients are intended to contribute. They felt that by selecting engagement issues, planners might miss the actual issues that were important to patients. By having full control of the agenda, planners may leave little space for patients to share what really matters to them. One informant said they start all engagement activities by asking the community what they want to talk about. Planners also warned e about power imbalances that arise when asking patients to share intimate details of their lives as evidence, while professionals share facts, numbers, and system-level data. They felt engaging patients over issues that matter to them, and empowering them to provide the type of input they want was essential to fostering meaningful participation. Moreover, patients noted the importance of not just having an opportunity to provide input, but of their input leading to a change in the program or service being planned, as a signifier that their engagement was meaningful.
Patients confirmed power imbalances arise when the engagement facilitator is also the person who provides the service in question. Many patient informants expressed discomfort with providing negative feedback and worry about their future access to care if they voice dissatisfaction. Several specified they would want the facilitator to be someone who was neutral and who did not provide them services. For example,
“If I criticize the way she's doing her job, she's going to look at me a different way and I’m not going to get my… the services that I would be before. Or I'll be considered a mouthpiece and she's just not going to listen to anything I say now.” (Patient participant in focus group)
“It's definitely a worry, because I'm already struggling to get the care that I need right now, so if I make things even worse by putting her down or something like that, or it's going to get even worse kind of thing.” (Patient participant in focus group)
Planners with substantial experience engaging marginalized patients described the importance of engaging patients on issues with which patients had concrete experience. Asking patients to engage with health systems issues or other ideas that are abstract from their experiences places a burden on patients to learn about the issues they were engaging about, which is not only a deterrent but may also diminish the importance of their values, preferences, and lived experience if they are not able to apply them to the issue.
“You would have to do so much work to make that space available and supportive, and help them culturally translate about this environment they've walked into.” (Patient engagement facilitator)
Patients confirmed these ideas through the ways they responded to questions about “patient engagement.” Despite our efforts to exemplify it in concrete ways, the concept of “patient engagement” seemed difficult to relate to. When asked how they would want to be engaged, interviewees found it difficult to develop theoretical responses about processes they did not have experience participating in, and instead often responded by discussing their individual healthcare experiences. We interpreted this to mean the concept of patient engagement per se lacked meaning to patients and was difficult to conceptualize.
Conversely, patients felt they could definitely provide input on concrete issues such as their experiences with health services. One informant also suggested she would be interested in observing practitioners and critiquing their interactions with patients.
Both planners and patients highlighted the importance of creating engagement opportunities matching the abilities and preferences of those participating. Some patient informants felt challenged to participate in group discussions, particularly large groups. Others said they did not feel comfortable in group discussion at all, and said they needed another way of participating, such as one-on-one discussions, or writing down comments.
“[in groups] you might not even say a word because other people… by the time I think of something to say, they've moved on.” (Patient participant in focus group)
Planners with extensive engagement experience provided paper for patients to write down their ideas, or incorporate opportunities for patients to share their ideas individually. They also used group facilitation strategies that enabled everyone to participate. For example,
“And a healing circle … even the smallest, squeakiest voice can be heard. And so I've learned as well when using the talking stick, that's another powerful, powerful tool when engaging, and it honours the learnings from others” (Planner for Indigenous health services)
Both patients and planners agreed facilitators need to gain patients’ trust and comfort in order to meaningfully engage them. Facilitators can build trust by holding engagement opportunities in familiar settings and involving trusted agencies as well as by signaling that patients’ participation was valued by providing food and taking care to organize events in ways that suited patients:
“Makes you feel like what you have to say is important because you guys put the time to make us feel as comfortable by doing these little things. Not that it was necessarily needed or whatever, but it just makes you feel that what you have to say is worthy of going that extra mile and putting this whole thing out, you know.”(Patient participation in focus group)
Certain groups such as people who use drugs, are Indigenous, or whose gender is non-conforming reported experiencing discrimination in society and from health service providers. To build trust and comfort among these groups, it is essential to actively normalize their experience within the context of the engagement. For example, facilitators may normalize diverse gender identities by starting a session asking people about the personal pronoun they wish to use.
Some patients said the presence of healthcare executives or decision-makers had potential to make them uncomfortable. However, both patients and health service planners said it was not only appropriate for executives and decision-makers to be in the room, it was important for them to hear directly from patients. Yet both groups felt it necessary to neutralize the power of professional participants through symbolic gestures such as only using plain language (no jargon), wearing neutral clothing (“
no suits”), and ensuring they only spoke when appropriate (e.g., they had permission from patients or patients spoke to them directly).
“I don't think [having executives present] ever changed the dynamic in terms of like in a bad way. I thought it always was excellent. As long as you can have that person, you are bearing witness from a one-way glass, and the only time you can speak is if we agree that the question in the room is appropriate to be directed towards you and that you can engage back with it, because otherwise we will affect the dynamic in the room.” (Patient engagement facilitator)
These findings highlight the need to adapt engagement processes to patients, rather than inviting them to participate in a process designed for health service planners.. This requires shifting power to patient participants, such as by engaging them at a location where they hold power, minimizing participation of people who have power over them (e.g., their health care providers), giving them choice in how they will participate, and empowering them to name the issues that are important to them or to criticize the system that has discriminated against them.
Facilitators can best adapt engagement processes by considering participants’ multifaceted identities, including age, gender, culture, education, and work background. The knowledge and skills patient participants possess, as well as their participation preferences, should dictate engagement format and strategies. For example, one informant who worked with Aboriginal communities indicated processes for engaging many Aboriginal communities should adapt to the matriarchal nature of the community, importance attached to elders, and other cultural traditions. On the other hand, when working to engage women who are mothers, the point of interaction will likely be different, and the way of engaging them might also look quite different. Facilitators should also examine their own identities and how these, in relation to patients’ identities, shape power dynamics in engagement processes.
Development of the model
What emerged from the synthesis of the findings from the literature review, interviews, and focus groups was not a single process for engaging marginalized populations, but instead an iterative process of fitting the engagement method to a particular situation (e.g., to patients’ needs and barriers to engagement, type of input patients are contributing, ability of the program to act on patients’ input, and health service planners’ needs). The model is intended to help planners develop an engagement process in which participants feel safe and empowered to share their lived experience as a form of evidence in health service planning. Underlying this iterative process is a set of principles for meaningfully engaging marginalized people in health services planning.
Figure
1 shows the first iteration of the model, which starts with an assessment of program leadership’s readiness to listen to the input of marginalized populations and use it to inform their planning process. If the program is not prepared to engage patients in a meaningful and authentic way, it should not proceed with patient engagement. Next, program planners engage in an iterative process of defining a clear purpose for engagement, identifying population(s) of interest, determining an appropriate environment for engagement, developing a process of information sharing, and considering benefits to those being engaged. These elements are viewed through a gender lens that recognizes how gender shapes experiences, identities, and opportunities. The IAP2 spectrum of participation, which is represented as a funnel, is used as a framework to determine an appropriate method for engagement. From there, consideration is given to how to recruit participants beyond those who already seek healthcare, conduct engagement that empowers marginalized patients to engage in meaningful ways, then feed patients’ input into the decision making process, followed by feeding information back to participants on how their input was used to inform decisions. Finally, processes and outcomes of the engagement are evaluated. This model was used in two pilots and refinements were made based on those experiences. The refined model is shown in Fig.
2.
In our refined model, we shifted determination of an appropriate engagement environment (setting) to follow the choice of engagement method, as part of a new logistics category, which also incorporates recruitment and barriers to engagement. This shift is the most significant aspect of the revised model because the choice of engagement level and method dictate considerations for all other aspects of the process.
For the engagement itself, considerations for facilitation and power inequities were highlighted due to the importance they had in the pilots. As well, some changes to the graphic design were made in order to better communicate concepts in the model, such as placing principles
1 on a circle surrounding the rest of the model to indicate they are important throughout all stages.
The experiences from the pilots were also used to refine the planning manual. Questions were clarified and reordered based on feedback from planners who participated in the pilots. (The final tools can be accessed from the Canadian Foundation for Healthcare Improvement’s (CFHI) Patient Engagement Resource Hub [
33]
2).