“Part of the Team”: Mapping the outcomes of training patients for new roles in health research and planning

Abstract Background A patient research internship (Patient and Community Engagement Research program—PaCER) was created to support a provincial commitment by Alberta Health Services’ Strategic Clinical Networks™ to find new ways to engage patients in a new interdisciplinary organization to support evidence‐informed improvements in clinical outcomes across the health system. Objective Implement and test a new research method and training curriculum to build patient capacity for engagement in health through peer‐to‐peer research. Design Programme evaluation using Outcome Mapping and the grounded theory method. Setting and Participants Twenty‐one patients with various chronic conditions completed one year of training in adapted qualitative research methods, including an internship where they designed and conducted five peer‐to‐peer inquiries into a range of health experiences. Main Outcome Measures Outcomes were continually monitored and evaluated using an Outcome Mapping framework, in combination with grounded theory analysis, based on data from focus groups, observation, documentation review and semi‐structured interviews (21 patient researchers, 15 professional collaborators). Results Key stakeholders indicated the increased capacity of patients to engage in health‐care research and planning, and the introduction and acceptance of new, collaborative roles for patients in health research. The uptake of new patient roles in health‐care planning began to impact attitudes and practices. Conclusions Patient researchers become “part of the team” through cultural and relationship changes that occur in two convergent directions: (i) building the capacity of patients to engage confidently in a dialogue with clinicians and decision makers, and (ii) increasing the readiness for patient engagement uptake within targeted organizations.


| INTRODUCTION
Involving patients as stakeholders in health-care decision making can benefit the effectiveness and sustainability of services [1][2][3] and is one of the central components of health-care policy development. 4,5 Training patients in new methods of engagement and research has enabled a shift from traditional, professionally directed health-care delivery towards a greater inclusion of patients and community networks. 6 A variety of patient or user initiatives related to health research have been introduced internationally and are based on a rich tradition. 7 Some prominent examples are INVOLVE, 8 the Patient-Centered Outcome Research Institute, 9 and the Service User Research Enterprise (SURE). 10 Engaging patients in research has great potential for empowering them in "doing and sharing research that deals with their well-being," 11 which, in turn, can catalyze their competence, self-confidence and engagement in negotiating with health-care policy change and research. 12,13 This international and domestic trend 14 enabled Alberta Health Services (AHS), the first province-wide health system in Canada, to create innovative approaches to sustainable health-care delivery, prevention and wellness for the entire province using an innovative approach to engaging patients and community members. The Strategic Clinical Networks™ (SCNs) 15,16 are the mechanism to promote evidence-based, clinician-led, team-delivered health improvement strategies and innovation across the province. 17 Funding received through a grant, "Patients Matter: Engaging Patients as Collaborators to Improve Osteoarthritis (OA) Care in Alberta" (2011)(2012)(2013), enabled the planners of this health-care restructuring initiative to engage patients as partners in the SCNs. 18 The task of changing citizen engagement in health-care decision making required an investment in building the capacity of patients and family members for using new engagement research skills. It also required efforts within AHS, and specifically the SCNs, to make sure that the patients' skills were utilized, and their newly trained voice heard before any potential shift in culture could occur. Citizens living with various chronic conditions were recruited to be part of an internship training programme to test this innovative approach and evaluate the outcomes.* The objectives of our project were as follows: (i) build the capacity of patients to engage confidently with clinicians and decision makers through their engagement research expertise; [19][20][21] (ii) bring a positive change to the culture and systemic factors that could drive patient engagement in health care; 3 (iii) promote the readiness for patient engagement uptake within the targeted organizations. 22 This 2-year study introduced a radical shift in roles of patients in health care that may encourage training for patients to take up other collaborative roles in health, research and decision making.

| Framework for evaluation
Outcomes were continually monitored and evaluated using an Outcome Mapping framework. 23 Outcome Mapping was chosen as a particularly relevant framework for programme evaluation because it begins at the point of designing the intervention and then continuously monitors and evaluates implementation, changing directions with input from all participating partners. Outcome Mapping, as a methodology for tracking social change using sound research methods of data collection and decision making, was recommended by the Canadian Foundation of Healthcare Improvement, the national funder of this initiative. We used Outcome Mapping to test the effectiveness and impact of investing in patient training to develop new social roles as patient engagement researchers. Outcome Mapping addresses the organizational and social ecological factors of change.
To augment and deepen our outcome analysis, we used the grounded theory analytical method that enabled us to focus on the changes experienced by the participating patients and SCNs. 18,[24][25][26] Through this combination of the Outcome Mapping design and monitoring with the grounded theory analytical approach, we conducted regular and consistent data collection from all stakeholders, including formal interviews, data capture of meetings and workshops within real-world settings of the internship training, as well as within the interactions with the SCNs. This method is used widely in Canada and other countries to provide systematic mapping and standardized data collection methods for tracking and reporting projects and programmes that include complex social networks and large-scale change. Outcome Mapping not only tracks predicted outcomes but uses a collaborative process of stakeholder involvement throughout the change process to maximize the sustainability and build capacity of stakeholders.

| Intervention
The investment in building patient capacity included the adaptation of a citizen-led research curriculum 27 30 and (iv) narrative interviewing. 31,32 The training consisted of 120 hours of classroom activity focused on specific adapted methods of qualitative inquiry built from previously published work. 27 The internship also included designing and conducting group research studies, in which PaCER interns applied their newly acquired research skills and used specifically designed methods to engage patients, families and communities (Data S1). Each PaCER intern group of four to eight patients designed a study and wrote a proposal that was submitted for approval to both the University of

| Study participants
Outcome Mapping defines groups, organizations and individuals directly involved in the study of change as "boundary partners". 23 1. The experience of living with chronic joint pain A qualitative study exploring the experience of patients living with chronic joint pain, whether undiagnosed or diagnosed as osteoarthritis, for which there was no cure, with the purpose to bring the reality of these patients to the attention of both the medical and general populations 2. The experience of waiting for help with osteoarthritis A study aiming to bring the patient perspective to the understanding of what it means for patients with osteoarthritis to wait for health care, encountering uncertainty and loss of control in waiting for medical events to unfold 3. Oh! Canada: Southeast Asian immigrants' experience of osteoarthritis surgery A narrative study conducted by a multi-lingual group of PaCER interns, focusing on the experiences of people with osteoarthritis-members of the Southeast Asian Community-who had reached "the end of the road" and had to have joint replacement surgery 4. The hidden pathways of chronic illness A study conducted by PaCER interns with a variety of health conditions, exploring how patients make sense of living through chronic illness. This study concentrated on patient experiences of finding and making pathways through their chronic illness apart from their journey through the health-care system and the clinical pathways

A case study of engagement at Wellspring Calgary: What works and how?
This study, built upon the theory of salutogenesis and based on the participant observation method, was undertaken by a team of six PaCER interns who had experience of cancer and decided to embark on a case study to explore the experience of attending a community-based cancer support and wellness centre (Wellspring Calgary), and to understand how such an organization might influence members to become more engaged in their health and wellness.

Publishing Status by late 2013
All five studies were delivered by patient researchers in local, national and international scholarly seminars and conferences (11 presentations and posters in Canada, US, and Berlin) At least 21 invited presentations locally for community audiences by the end of 2013 Challenges: Publishing was one of the desirable outcomes, and challenges in scholarly publication were expected, considering that these were non-traditional patient-led, student studies. While authoring their publications upon graduation, PaCERs encountered time constrains as they became engaged in many SCN activities. Currently, publications are underway: one study is under peer review with an academic journal (authored by patient researchers), and others are being prepared for publication with the University of Calgary Press PaCER, patient and community engagement research.
were required (e.g, we did not require police checks). Participants were reimbursed for their travel and parking, and food was offered on training days. Training was provided free of charge. We did not screen potential participants-rather, they self-selected once they started, and were free to stay or withdraw at any point in the study. In total, of the 46 recruits (two cohorts within two years), 21

| Data collection and analysis
Outcomes Mapping is built on three stages. In the first stage, Intentional Design, all partners create a vision of desired outcomes and strategies to bring about the changes-the "Outcome Challenges" ( Tables 2-4 and Table S1). In the second stage, Outcome and In addition, we conducted two sets of semi-structured face-to-face interviews and surveys in the beginning of the project, and at the end of the project, we conducted focus groups with participants and documentation reviews (Table S2).
Our main objective was to implement and test a new research method and training curriculum to build patient capacity for engagement. We used Outcome Mapping as a collaborative design tool. As the project progressed, the emerging data led us to a deeper theoretical investigation, as our observations started to show a potential for changing relationships between patients and medical professionals, decision makers and researchers. We were interested in studying these emerging processes. The grounded theory analysis method 25,26 was particularly effective for this purpose, including coding techniques at various levels of conceptualization and comparison, leading to the emergence of increasingly abstract categories that described the experiences of patients and the development of a theoretical evaluation of the outcomes. observed within the two years of reported data. As the data were analyzed, two major questions emerged from the evidence: What changed for people when they became patient engagement researchers and conducted research? What changed within the health-care system when "patients" became researchers and got meaningfully engaged?

| RESULTS
The emerging core process of patient researchers "becoming part of the team" was conceptualized within the relationship and discourse changes in two convergent directions. First, the patients' new capacity and role as researchers provided them with confidence, knowledge and a legitimate place at the health-care decision-making table.
Second, the perceptions within the targeted health-care organizations were shifting towards acceptance and uptake of this newly informed patient input. In this analysis, we are presenting the growth and challenges within each of these clusters of change.

| Patient engagement researchers: "knowledgeable, competent and assertive partners"
Patients' experiences of change while conducting this research and becoming engaged in the SCNs are captured within the following categories.

| Competence and empowerment
Participants  to it, we will enrich the decision making process.

[PaCER intern]
Participants saw opportunities for capturing authentic health experiences because patients are in a position to access patient-centered data and interpret it in a unique way.

| Cocreating knowledge
PaCER methods, including specific approaches to focus group and interview facilitation, involve study participants in co-creating research questions and co-discovering the answers to those questions.
According to their accounts, PaCER approaches generated peer-topeer relationships that were particularly effective in allowing people to discover and co-create knowledge:

[PaCER intern]
This often involved sharing the experiences that had never been shared before, and participants in the internship studies discovered that their knowledge was both valued (as a contribution to valid research) and validated by peers (as an expression of understanding and support): We are here to allow people to gain power through being part of the research… so it's really about them, not so much about us… this research has been designed this way.

| Health care researchers: "deploy patient researchers as equal partners"
In the beginning, most of the health system boundary partners had hopeful expectations for this project, referring to the PaCER model's potential to increase patients' education level, enhance their ability to manage their own health, encourage patients' buy-in into positive health behaviors, and convey the patient voice to inform health-care delivery changes. Informants also expressed concerns about patient researchers' possible bias or their potential judgemental stance. As the project progressed, the relationships shifted and the attitudes began to change, especially at the top decision-making levels in AHS.
As PaCER interns were invited to join the SCNs, these stakeholders noted the new perspectives.

| Initial expectations: The "cautiously optimistic" discourse
The concept of patients leading all aspects of the research process was disruptive because these new, unconventional roles taken by patient researchers departed from the traditional roles of a patient as a service user, volunteer, advisor or advocate. scientists. We heard a concern that resources might be better spent on enhancing patient engagement in some other, more traditional ways.
Concerns were expressed about patient researchers' possible inadequacy, preconceived position, lack of awareness of confidentiality and research ethics or their potential judgemental stance towards healthcare system.
In contrast, there was general consensus that patients would be able to ask research questions that traditional expert researchers would not necessarily think of, and that patients have the unique expertise that is currently under-represented in research.

| Towards the partnership discourse
As the project progressed, we observed some remarkable changes in the relationship and language within the organizations and groups involved, but also encountered contextual, organizational and cultural barriers beyond our influence.

| Reducing power imbalances
Even where tensions existed, participants experienced acceptance and respect from clinicians and other professional members of SCNs, which allowed PaCERs to provide valuable contribution to these groups and feel heard: As a result of this early engagement, the BJSCN remained a leader of uptake of PaCER model. The lesson we will take into the future is that our decision to step forward and begin early enabled growth and engagement in collaboration.

| DISCUSSION
We began this initiative with the Outcome Mapping method of intentional design and data collection, adding grounded theory analysis to track emergent theoretical perspectives related to the changes within the culture of health care, which presented a way to study changing roles and relationships among patients, health researchers and health system planners. We encountered a few challenges and limitations. For example, as we expected, maintaining patient participation was challenging, mainly because of high intensity and expectations in training.
These difficulties were not associated with age or education level.
However, because all interns were patients, in a few cases health or family issues forced people to withdraw. As one of our participants noted, "You have the problem of engaging people without frightening them away with the enormity of the project." Participants expressed concern about extending our research to marginalized communities. Although at least two of the five completed studies did reach out to some segments of these groups (eg, the aging immigrants and the homeless), there was a pressing need to focus on these patient populations in our future work.
Now that many organizations have been exposed to the new concept of PaCER, we have learned that in any given organizational or group context it takes time and a substantial effort in collaboration for the concept of PaCER to be truly understood, embraced and take root.
The lesson we will take into the future is the need to be patient, clearly represent new roles, and to invite multiple partners to join. With only two years into the development of such a broad and new initiative by the time of this analysis, it was too early to expect any indications of a systemic impact on health-care reform. However, we discovered several notable trends within relationships and culture, and also learned some significant lessons in this process.
The new PaCER model was well received by multiple stakeholders.
In the current context of health care, patient engagement is considered essential, and PaCER provides a breakthrough by offering a vehicle for engaging patients and families in health decision making in a novel and meaningful way. We recognize that environmental factors might present a challenge to safeguarding the impact of this initiative. To seize the existing opportunities, we are building on our established partnerships and extend our collaboration to broader professional and academic groups.
While our goal was to ensure that the voice of the patient was central to the change efforts underway within the SCNs, we also hoped that the concept of PaCER would have broader application within other sectors of AHS and health science. In this, it is clear that PaCER cuts across all three areas of engagement identified by Carman et al. 33 : direct patient care, organizational design and governance and policy making. That said, the most distinct potential impact of PaCER lies at the levels of influencing health culture and systems of care. 18 Legitimate PaCER roles have potential to create a sustainable interface between patient-produced health experience knowledge and policy making in health care.

| CONCLUSIONS
As the initiation of the original project, PaCER has been embraced by many organizations in Alberta, including AHS, academic and community groups. The benefits of this initiative, albeit only emergent, have been demonstrated within two convergent streams of cultural and relationship change: (i) building the capacity of patients to engage confidently in a dialogue with clinicians and decision makers, and (ii) increasing the readiness for patient engagement uptake within targeted organizations.
Patient researchers have begun to be welcomed by health-care research and decision-making organizations as "part of the team." PaCER opens the door to a nascent science of health experience and engagement.
We are now observing the first compelling indicators of success and we are left with many unanswered questions related to the long-term impact of the fledgling new model. It is our priority to continue PaCER training and research to capture the long-term impact, safeguard the positive change, and make PaCER accomplishments sustainable.