BC SUPPORT Unit Patient Engagement (PE) Methods Cluster

Report on Stakeholder Consultations for Methods Cluster Development

November 2018

Erin Michalak, Lead

Alison Hoens, KT Specialist

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Table of Contents

Executive Summary .................................................................................................................................. 3

1. Overview ......................................................................................................................................... 4

2. PE Methods Cluster Visioning Workshop ....................................................................................... 7

2.1 Setting the Table ......................................................................................................................... 7

2.1.1 Results from prior stakeholder consultations: Interviews, survey & Tweetchat ........................ 8

2.2 Winning recipes for patient engagement in research: A series of short stakeholder presentation to whet your appetite ..................................................................................................... 8

2.3 Meal options. Identifying ideas for methodological projects ..................................................... 9

2.4 Meal refinement. Refining project ideas. .................................................................................10

2.5 Wrap-up and next steps ...............................................................................................................10

2.6 Post-Visioning Workshop Activities ..............................................................................................10

3. PE Methods Cluster Theme/Subthemes & Project Area Ideas .....................................................11

4. Project Identification and Formation of Research Teams ............................................................14

5. Next Steps: Work Plan Development and Review ........................................................................15

Appendix A: Questions for stakeholder consultation activities (survey, interviews, Tweetchat) .........16

Appendix B. Graphic Recordings from discussion at Visioning Workshop ............................................17

Appendix C: Responses to the open-ended questions in the post-event survey ..................................19

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Executive Summary The BC SUPPORT Unit (the Unit), a component of Canada’s Strategy for Patient-Oriented Research (SPOR), is a multi-partner organization created to support, streamline and increase patient-oriented research throughout British Columbia. The Patient Engagement (PE) Methods Cluster is one of six Methods Clusters within the Unit. The objectives of the PE Methods Cluster are as follows:

(1) Establish a collective vision for methodological advancement amongst diverse PE stakeholders in BC;

(2) Develop a collaborative framework for action to advance the evidence base of the scientific methods used in PE in research;

(3) Identify elements of a Work Plan for the PE Methods Cluster and the required resources to initiate this plan.

In the fall of 2017 and winter of 2018 the PE Methods Cluster undertook a series of consultations with diverse stakeholders who have expertise/interest in PE inform the development of a multi-year work plan. The consultations included: interviews (32 individual and 2 focus group for a total of 38 participants), an online survey (62 respondents), a Tweetchat (38 active participants), a Visioning Workshop (51 individuals representing patient, researcher, healthcare provider and healthcare decision-maker perspectives), and a webinar providing key messages from the preceding consultations (attended by 16 stakeholders with the recording viewed 29 times [as of August 20, 2018]). Feedback from all stakeholder consultations led to the identification of one overarching theme and 3 subthemes, based on the interests, expertise and priorities of the PE community and patient partners in BC. Specifically, the overarching theme pertained to the importance of ‘Advancing and Embracing Diversity in PE in Research in BC’. Given the strength of the ‘Diversity’ theme, it was proposed that all PE Methods Cluster projects should, at some level, seek to advance the science of PE in diverse populations. The three sub-themes identified were: 1. Patient Priority Setting; 2. Harnessing Digital Health Technologies, and 3. Advancing Methods for, and Evaluation of, Recruitment and Patient Role Optimisation

The theme/subthemes and possible project ideas were shared directly, validated and refined with all stakeholders who had engaged with the cluster and, via the SUPPORT Unit electronic newsletter, with a broad audience. Leads and collaborators for potential projects were identified through an open call and project proposals were iteratively developed together with the project teams, Cluster Lead & KT Specialist.

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This document describes PE Methods Cluster consultations in detail and provides an overview of the projects which are moving forward.

1. Overview The BC SUPPORT Unit (the Unit), a component of Canada’s Strategy for Patient-Oriented Research (SPOR), is a multi-partner organization created to support, streamline and increase patient-oriented research throughout British Columbia (BC). Launched in November 2016, the Unit has created a total of six Methods Clusters to focus on advancing the science in methodological areas contributing to patient-oriented research. The Patient Engagement (PE)1 Methods Cluster’s mandate is to spearhead innovative, provincially-focused advances in PE methods. Its goals are to: (1) Establish a collective vision for methodological advancement amongst diverse PE stakeholders in BC; (2) Develop a collaborative framework for action to advance the evidence base of the scientific methods used in PE in research, and; (3) Identify elements of a Work Plan for the PE Methods Cluster and the required resources to initiate this plan.

Development of methods to advance PE in health research requires the input of a diverse group of stakeholders including patients, academic and clinician-researchers, healthcare providers, policy makers and community organisations. In alignment with SPOR and the goals of the BC SUPPORT Unit, authentic partnerships between these diverse stakeholders need to be cultivated in order to effectively identify and address priority areas of methodological development, and build capacity for future patient-orientated research projects. Accordingly, beginning in November 2017, the PE Methods Cluster Lead Dr. Erin Michalak and Methods Cluster Knowledge Translation Specialist Alison Hoens commenced stakeholder engagements (see Figure 1) culminating in a full-day visioning workshop on February 20, 2018 in Vancouver. The objectives of the Visioning Workshop were to:

• Inform the development of a collective vision for methodological advancement in PE amongst diverse stakeholders in BC;

• Inform a collaborative framework for action and the development of a Work Plan for the PE Methods Cluster;

• Stimulate the development of a community of methodologists and relevant stakeholders who will contribute to the activities of the cluster.

1 ‘Patient Engagement’ can be understood as meaningful and active collaboration in governance, priority setting, conducting research, and in summarizing, sharing, and putting the knowledge gained into action (i.e., knowledge translation). The term ‘patient’ is over-arching and inclusive, referring to people with lived or personal experience of health conditions or issues, and the people who support them, such as family members, friends and informal caregivers.

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Figure 1: Stakeholder Consultation Process

To foster stakeholder engagement in the cluster prior to the Visioning Workshop, Dr. Michalak and Alison Hoens undertook a series of consultations, formally and informally, with researchers, health authority partners, and patient and public partners across BC. Each type of engagement was focussed on four main questions: “What does authentic PE in research look like?” “Where are we currently flourishing in terms of advancing PE methods in BC? What gaps needs to be filled?”; “What barriers are we facing in terms of advancing PE methods in BC?” and, “Is there anybody else in BC (with a methods focus) we should we be reaching out to as part of this consultation process?” (see Appendix A).

First, interviews and focus groups (N=2) with a total of 38 individuals with expertise/interest in PE were conducted. These consultations were recorded, transcribed and key messages identified.

Second, a brief online survey (that included an expression of interest in attending the Visioning Workshop) was distributed widely through the Unit’s biweekly newsletter, targeted directly to BC research institutes and patient organizations relevant to PE in research, and ‘snowballing’ wherein recipients were asked to share the survey invitation with colleagues whom they anticipated might find this opportunity relevant. The survey was active from December 2017 - January 2018. The 62 respondents self-identified as follows: 31% patient partners, 58% researchers, 11% healthcare providers, 11% decision-makers and 32% other. Regional representation via location in a health authority included: 18% Vancouver Island Health, 44% Vancouver Coastal/Providence Healthcare, 6% Northern Health, 11% Interior Health, 19% Fraser Health and 2% other.

Third, a Tweetchat was conducted. Promoted through the social media platforms of the BC SUPPORT Unit, and extended via the social media networks of partner organizations, the Tweetchat was held over noon hour on February 7th 2018. The session was hosted by Iva Chung, and experienced facilitator of social media activities. There were 38 active participants, ~27K impressions and ~ 500 engagements. Details are available at http://bcsupportunit.ca/patient-engagement-tweetchat

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The knowledge gathered from the interviews and focus groups, survey and Tweetchat were collated and analyzed for identification of key messages/themes for subsequent discussion at the Visioning Workshop.

In order to prepare patient and public partners who were attending the Visioning Workshop, an orientation webinar was held on February 6th, 2018. Fourteen patient partners attended the webinar in which provided an opportunity to share key terminology, proposed content and format of the workshop, logistical issues related to travel and accommodation, and discussion regarding anticipated roles and responsibilities.

Over 100 people expressed interest in attending the Visioning Workshop. As the capacity of the venue was limited to a maximum of 60 participants a process was undertaken to identify participants using a balance of the following criteria for representation:

• Geographical location i.e. ensuring representation from all regions of BC; • Role i.e. The Canadian Institute of Health Research (CIHR) 4 stakeholder groups:

patients/families (with a target of ~1/3 of the total attendees), researchers, healthcare providers, healthcare decision-makers;

• Area of research expertise i.e. expertise in diverse research methods; • Diversity i.e. inclusion of patients representing different conditions/disease, experience

with healthcare research.

A total of 51 persons attended the Visioning Workshop. The event proceedings were audio-recorded and graphic facilitation occurred. Participants provided discussion notes and other written feedback capturing both individual and group perspectives. The recording was transcribed and the written material assembled for analysis and reporting purposes. A summary of the activities and outputs of the Visioning Workshop is provided in Section 2 and Appendix B.

After the workshop, two additional opportunities were provided for stakeholder consultation: a post-workshop survey (28 responses – see Section 2.5 and Appendix C) and a webinar (April 4th 2018) summarizing key messages from the collective consultations.

Using information gathered from all stakeholder consultation activities described above, one overriding theme and 3 subthemes (with examples of potential project ideas) were identified (see Section 3). After review by the Scientific Director Dr. Stirling Bryan and the members of the Science Council (Leads and Advisors of all Methods Clusters), these were revised and shared via email on May 10, 2018 with all stakeholders who had engaged with the cluster. Additionally, this information was posted on the webpage for the cluster (http://bcsupportunit.ca/pe-methods-cluster-themes) and a link shared via the SUPPORT Unit biweekly newsletter (1,875 subscribers). Feedback to three questions was requested:

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a. Do the themes and potential project areas resonate with your recollection of our consultations and the current needs and opportunities for PE methods development in BC?

b. Are there any additional themes and/or potential project areas that you feel are important for the cluster to consider?

c. Are there specific recommendations for the potential project areas to refine their scope/focus?

The co-development of project teams and proposals for the Work Plan are described in Section 3 and Section 4, respectively.

Figure 2 provides an overview and timeline of the activities of the PE Methods Cluster.

Figure 2: Overview and Timeline of PE Methods Cluster Activities

2. PE Methods Cluster Visioning Workshop

2.1 Setting the Table The Visioning Workshop commenced with the acknowledgment of the unceded indigenous land, and its peoples, on which the event was held. After welcoming remarks by the Scientific Director Dr. Stirling Bryan and introductions of participants at each table, Dr. Michalak set the stage for the day by describing the metaphor for the day (creating a meal for people) discussing core values around PE and defining ‘patient’ and ‘patient engagement’.

A brief description of SPOR, The BC SUPPORT Unit and Methods Cluster was then provided by Alison Hoens.

Phase 1 Interviews, pre-workshop

survey, Tweetchat, orientation webinar,

Visioning Workshop, Post-Workshop Survey and

Webinar

Phase 2 Identify

Theme/subthemes & potential project areas,

Collect Stakeholder Feedback

Phase 3 Refine Project Areas,

Establish project teams, Develop project

proposals, Stakeholder Report and Work Plan

Phase 4 Undergo Internal and External Review and Commence Projects

Nov. 2017-Apr. 2018 May - June 2018 June – Sept. 2018 Oct. - Dec. 2018

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2.1.1 Results from prior stakeholder consultations: Interviews, survey & Tweetchat

Dr. Michalak then provided a summary of the collective results from the previous stakeholder consultations.

a. What is authentic patient engagement in research? i. Occurs across a continuum of research and knowledge translation and, in an

ideal world, the research questions will be asked by patients ii. Is a cyclical process

iii. Embraces diversity iv. Is equitable with power-sharing v. Values patient expertise

vi. Is impactful b. Where are we flourishing?

i. We have passion, and momentum with the time ‘ripe’ time to make changes provincially as many hearts and minds are in the same place

ii. BC has good infrastructure – i.e. Patient Voices Network, research groups, BC SUPPORT Unit etc.

c. Where are the gaps? i. Lack of evidence: particularly about most effective methods for patient

engagement in research ii. Lack of diversity/representation

iii. More authentic engagement of those that face obstacles to joining the discussion.

d. Tweet Chat: takeaways i. Similar themes to the survey

ii. Many people have an easier time explaining what PE isn’t – versus what is iii. It’s the opposite of tokenism, the other side of the coin iv. Patients define what is PE.

2.2 Winning recipes for patient engagement in research: A series of short stakeholder presentation to whet your appetite

The next portion of the Visioning Workshop was an opportunity to highlight stellar examples of PE in research throughout BC. There were 7 presentations (described below):

1. Victoria Maxwell - A fusion of flavours: Arts-based and community-engagement methods to shift stigmatizing attitudes. Described a CIHR-funded production of a one-woman show designed to reduce stigmatizing attitudes towards people with mental illness conducted within a Community Based Participatory Research framework. Two key take-home messages were the need to recognize when the researcher should ‘step out of the kitchen’ and that arts-based interventions can be an effective form of KT.

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2. John Chernesky - Capturing the lived experience: Developing a provincial strategy for pressure injury reduction in spinal cord injury. Described the experience of the Rick Hansen Institute to address pressure ulcers in persons living with spinal cord injury (SCI). Key ingredients for the stakeholder consultation process was described.

3. Rachelle Hole - Mapping for change: Using participatory research to promote inclusive employment for individuals with intellectual and developmental disabilities. Described the phases of a research project undertaken in the BC Interior to develop an online mapping tool to share and learn about inclusive employment opportunities for individuals with diverse abilities in BC. Methods for the engagement of diverse stakeholders, particularly patient partners, were described.

4. Nitya Suryaprakash - Engaging South Asian Patients who have had Knee Replacement Surgery in Research. Described a SPOR-funded initiative undertaken in Fraser Health to identify the research priorities for South Asian patients with knee replacement secondary to osteoarthritis. The key ingredients for success included culturally sensitive research methods, social marketing and community outreach. The challenges related to language (multiple languages and varying proficiency in English) were highlighted.

5. Aidan Scott - Implementing knowledge: A Brohealth story. Described Aidan’s experience supporting mental health in young men. One key message shared is that true PE is the antithesis to group think.

6. Connor Rosen and Bernie Pauly - Creating Culturally Safe Primary Care and Reducing Stigma of Substance Use. Described a project focused on reduction of stigma in people facing misuse problems and work undertaken on Vancouver Island to address the opioid epidemic by impacting physicians involved in primary care. A key ingredient was the concept mapping of the meaning of culturally safe primary care.

7. Sara Lapsley - Supporting Recovery by Improving PE in a Forensic Mental Health Hospital. Described a PE project undertaken in a BC forensic psychiatric hospital. The process undertaken was explored to highlight the ingredients for the success: a well-resourced, cohesive team with a shared purpose, genuine belief in the patient partners’ abilities and the application of rigorous methods.

2.3 Meal options. Identifying ideas for methodological projects The intent of this portion of the Visioning Workshop was to provide participants with the opportunity to work in small groups, followed by large group discussion, to identify ideas for methodological projects suitable for the cluster.

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In pre-identified small groups comprised of stakeholders from different perspectives (i.e. role (e.g. patient, researcher etc.), geographical location, health condition etc) brainstormed ideas for methodological projects to advance the science of PE in BC. Specifically, they were asked to address the following questions: What’s the gap/need in PE in research? What’s the project idea to address this gap/need? Who, in the province, has knowledge/expertise/perspective to contribute?

Following the small group work, a group member was asked to share with the large group the ‘top 1 to 3 ideas’. The discussion was recorded, transcribed and later analyzed together with the notes provided from the recorder at each table.

2.4 Meal refinement. Refining project ideas. Although initially intended as a world café format with participants moving across tables sequentially to share thoughts on the proposed project ideas, participants shared that they would be more effective if they remained in their table groups. Table facilitators shepherded discussion related to the following questions: “What are the strengths of the proposed projects?”, “What are the possible barriers to success?”, “How could the barriers be overcome?”, and “Who is missing from the initial list of potential contributors?”. Again, a group member was asked to share back to the large group the ‘top 1 to 3 ideas’ and discussions were recorded, transcribed and later analyzed along with the table notes.

2.5 Wrap-up and next steps The Visioning Workshop closed with a summary of next steps for the PE cluster: webinar, development and validation of themes and project ideas from all stakeholder consultations, identification of project teams, development of project proposals & Work Plan and internal and external review of Work Plans prior to the launch of projects.

2.6 Post-Visioning Workshop Activities Post-workshop survey

Twenty-eight people who attended the Visioning Workshop responded to a post-event survey. The survey comprised 3 questions using a four-point Likert scale (Strongly Agree to Strongly Disagree) about the event’s organization and content, perceived change in level of understanding and perceptions regarding the extent to which the event ‘moved the dial’. In regards to organization: 92% agreed or strongly agreed that the objectives of the event were clear; 100% that it was well organized and well facilitated; and 82% that there was sufficient time scheduled for small group work and large group discussion. Eighty-nine percent, 86% and 82% agreed or strongly agreed that the workshop enhanced their understanding of POR, the SUPPORT Unit and Methods Clusters and the science of PE in research, respectively. Finally, 100% agreed or strongly agreed that the workshop stimulated the development of a

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‘community’ for PE in research and 89% that there was a good start to the discussion about potential areas of focus for methods in PE in research.

There were 2 open-ended questions in the survey. Twenty-one individuals provided comments in response to the question “Is there something about the PE Methods Clusters that you feel excited about?”. Seventeen individuals provided comments in response to the question “Is there something about the PE Methods Cluster that you feel concerned about?” (see Appendix C for a de-identified record of all comments).

Webinars

On April 4th, 2018, a webinar that included key material from the survey, interviews, Tweetchat and Visioning Workshop was held, with 16 people in attendance. A recording is posted online (https://tinyurl.com/y7g4tkfg) and has been viewed 37 times (as of October 29, 2018). On October 24th 2018 an update and discussion of preliminary project ideas and advancements was also held, with 10 people in attendance. A recording is posted online at https://bcsupportunit.ca/resources/patient-engagement-methods-cluster-shaping-next-steps-recording

3. PE Methods Cluster Theme/Subthemes & Project Area Ideas Analysis of information gathered from all stakeholder consultation activities led to the identification of one unifying theme and three sub-themes for the PE Methods Cluster projects.

The one dominant theme, irrespective of consultation method was Advancing and Embracing Diversity in PE in Research in BC. Broadly speaking, many of the stakeholder consultation participants spoke to significant strengths and strides in advancing PE in research in the province, and provided impressive case examples of innovative research undertaken or underway. However, a high proportion of participants also spoke to a collective need to ‘move the dial’ in terms of advancing methods with the aim of empowering people from marginalized, disenfranchised or underserved populations who often face multiple, intersecting barriers to fully engage in research.

Other themes (described below) were identified during the stakeholder consultations, but the dominance of the ‘Diversity’ theme was notable. It was therefore proposed that the work ahead for the PE Methods Cluster speak clearly to this theme. Specifically, that all PE Methods Cluster projects should, at some level, seek to advance the science of PE in diverse populations.

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The term ‘diversity’ was defined, in the context of the PE Methods Cluster, in relation to stakeholder’s specific examples of the need for improved engagement methods in research in a range of traditionally marginalized populations. These include, but are not limited to:

• Patients experiencing multiple inter-sectional barriers, stigmatized identities, inequities or forms of oppression;

• Indigenous/First Nations peoples; • Patients living in rural/remote areas in BC; • Youth/older adults; • Ethnic minority/immigrant/racialized populations; • People of diverse genders (a preponderance of female participants in research was

spoken to, and the need for improved methods for engagement of people who identify as transgender/gender-diverse);

• Patients identifying as LGBTQ2; • Patients who are in poverty/low SES; • Patients who are in an acute stage of illness or experiencing a complicated illness

trajectory (e.g., co-morbidities, or the experience of more than one health condition at once)

Discussions around the theme of ‘diversity’ did not speak frequently to specific project ideas, but instead to the values seen as underpinning the need for the PE Methods Cluster to advance the science in the area. Values and opportunities for research advancement included: appreciating intersectionality, attention to redistribution of power, the merits of a health equity lens and the desire for the PE Methods Cluster to co-create authentic methods for BC’s First Nations to engage in health research and share traditional ways of knowing.

Sub-themes

The three identified sub-themes were as depicted:

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In more detail:

Sub-theme A. Patient Priority Setting. This sub-theme was nested within rich conversations about the need for patients, where possible, to be included from the beginning to the end of the cycle of research and KT. The most prominent gap spoken to in the consultations concerned the need for improved methods to involve patients in priority setting for research. Specific project examples included rigorous comparisons of various research methodologies (e.g., Deliberative Dialogue, Delphi Consensus Consultation methods, quantitative methods, mixed methods).

Sub-theme B. Harnessing Digital Health Technologies. This sub-theme spoke to a perceived opportunity to harness the rapidly evolving field of digital health technologies in the work ahead of the PE Methods Cluster. Specific project examples included digital methods to advance ‘Citizen Science’ (broadly defined as a social movement, wherein the public actively engage in scientific research activities through their intellectual efforts, knowledge and resources, or by contributing their own information (e.g., health-related data; lived experiences), projects to explore online platforms and social networking to advance PE in research and projects on patient perceptions of the ethics of AI/machine learning/newer technologies such as Blockchain.

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Sub-theme C. Advancing Methods for, and Evaluation of, Recruitment and Patient Role Optimisation. This sub-theme spoke to a desire to advance recruitment methods for patient-engaged research projects, and to develop better methods to assess, articulate and evaluate patient roles in research. Specific project examples included projects to identify new evidence on methods for matching of patients to projects/researchers, projects designed to deepen understanding of the most effective roles patient partners can play in diverse research studies and to help identify when, whom, and how best to engage, and projects to better evaluate/measure the impact of recruitment strategies on a range of (e.g., patient-centric, research-centric, policy-centric) outcomes (e.g., patient satisfaction/health and psychosocial outcomes, research process/quality/impact, policy level impacts).

These themes were reviewed with Professor Stirling Bryan (BC SUPPORT Unit Scientific Director) and Alison Hoens. The themes were then shared with stakeholders via email on May 10, 2018 Stakeholders were invited to provide feedback to the following questions to inform the next phase of planning – project selection and formation of research teams:

1. Do the themes and potential project areas resonate with your recollection of the discussion and the current needs and opportunities for PE methods development in BC (particularly within the context of POR)?

2. Are there any additional themes and/or potential project areas that you feel are important for the cluster to consider?

3. Are there specific recommendations for the potential project areas to refine their scope/focus?

4. Project Identification and Formation of Research Teams Stakeholder feedback regarding the theme/subthemes and potential project areas were reviewed by the Dr. Michalak, Dr. Stirling Bryan and Alison Hoens. The review of all stakeholder feedback identified a number of well-defined project ideas that aligned with at least one of the sub-themes. Dr. Michalak followed-up with those who had described/submitted the project ideas in order to gather further information regarding (i) the potential for the described project to meet the BC SUPPORT Unit patient-oriented criteria, training requirements, and budget constraints, and (ii) the willingness and enthusiasm for additional collaborators to join the research team and to leave open the roles and responsibilities of research team members until the stakeholder consultation process was complete. Other criteria for the projects which would be moved forward included diversity in geographical location of research team members, including patient partners. Additionally, the proposed projects were assessed for alignment with

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CIHR-defined POR criteria; buy-in from the stakeholder groups needed to ensure success; the capacity to fulfill the training objectives of the BC SUPPORT Unit; and the required budget.

Dr. Michalak subsequently moved forward the project identification and team-building process by working directly with stakeholder who had expressed an interest in advancing project ideas in the thematic areas (outlined above). The names listed alongside each project specify the individuals who had stated a willingness to lead, co-lead or collaborate on the projects (names appear in alphabetical order).

1. PE Methods Cluster: Diverse Communities Facing Multiple Barriers to Engagement in Patient-Oriented Research Co-leads: Davina Banner and Sue Mills.

2. Citizen Science project (cross-cluster). This project is a collaboration between three BC SUPPORT Unit Methods Clusters: Knowledge Translation & Implementation Science (KT/IS), Data Science & Health Informatics (DaSHI) and Patient Engagement (PE). The PE Cluster is collaborating on this project as it develops, but full engagement and specific project articulation will not occur until 2019.

3. PE Video project (cross-cluster). This project will develop a suite of videos on a novel collaborative video co-production platform focused on research methods for engaging with diverse populations

4. Digital Divide Project. Co-Leads: Skye Barbic and Shelly Ben-David.

5. Next Steps: Work Plan Development and Review

A Work Plan with detailed project proposals is under development. Team membership, roles and responsibilities will be finalized as stakeholder feedback is reviewed. The projects, and the Work Plan as a whole, will be internally reviewed by the Science Council (comprised of the Cluster Leads, Advisors, Scientific Director and KT Specialist). Potential conflicts of interest will be discussed according to the procedures documented in the Terms of Reference of the Science Council. Subsequent to internal review, the Work Plan will be reviewed by 2-3 PE experts outside of BC.

Appendix A: Questions for stakeholder consultation activities (survey, interviews, Tweetchat)

1. What does authentic PE in research look like to you?

o What are the values/principles/criteria that underpin this?

2. From your point of view, where are we currently flourishing in terms of advancing PE methods in BC?

o Can you describe specific BC-based projects that have applied PE methods that have impressed you (feel free to describe your own!)? Who was involved, specifically? Who springs to mind when you think of people who are leading the way in exploring PE methods in BC?

o Broadly speaking (i.e. nationally/internationally), are there recent innovations in PE methods that have really excited you?) From your point of view, where are we struggling (what don’t we know in order to do this well)?

3. What gaps needs to be filled? What barriers do you think we are facing in terms of advancing PE methods in BC?

4. Is there anybody else in BC (with a methods focus) you think we should we be reaching out to as part of this consultation process?

APPENDIX B. Graphic Recordings from discussion at Visioning Workshop

Appendix C: Responses to the open-ended questions in the post-event survey (all responses are presented verbatim) Is there something about the Patient Engagement Methods Cluster that you feel excited about? (if so, please describe briefly). - I am excited about the prospect that, now I've met some more people interested in this, I can reach out and get a bit more movement happening in BC, more specifically in the Interior geographic. The things that I would do sometimes do not yet really resonate in this large region and sharing good examples (oh, sorry, where are the slides??) and knowing the right people surely helps. I am excited about staying involved and growing local expertise on the organization (Italics, emphasis please here...) of collaborative health research, engaging with diverse patient partners, which is key I think. I am glad Rachel Hole presented, it's been hard getting a hold of her re SPOR activities and hopefully her attendance in the PE Methods Cluster event helps. I can foresee other researchers would like hearing what methods work, and am sure there's other too. For example, using PhotoVoice and then pt. story telling about the photo and pt. experiences is getting some attention. Other ideas too!! - specific investigation related to patient compensation - The amazing people invovled. Everyone at the day was great. - Working together with other stakeholders across the province - More opportunities to influence change in our provinces and countries healthcare. - I am excited to see the emerged themes from the large and small group discussions. In addition, it would be great to see what kind of projects materialize in the cluster. - Applying scientific approaches to describing/defining this "messy" field. - I think there is incredible richness in the diversity of stakeholders who have engaged in the early days of the cluster and would like to see that continue to be developed. I think there are tremendous resources to be found in the diversity among the cluster. - I think the focus on methodology in a diversity of topic areas made the day rich and I'm excited about future opportunity to get going on project work. I liked the diversity including patient/person involvement. - What a great group at the event! I was excited about all the people who really want to see this cluster take off - some great minds and hearts at the event. Certainly within my table, everyone seemed to have a voice and some great ideas were generated. Can't wait to be a part of this! - It was inspiring and energizing to spend the day with a diverse group of people who share a passion for patient engagement. There was lots of enthusiasm for the proposed methods projects and I look forward to seeing how this work evolves. - I'm excited to see the next steps and how our dialogue during the workshop will lead to actual projects. - There is great breadth and depth of experience with PPI among the Cluster members/event attendees. Lots of potential to build strong methods projects. - The project that identified the challenges community researchers face when having to disclose as part of the application process. This requires a policy review and reform. That's where it all starts so much be addressed. - The opportunity to meet "like minded" people. - I am extremely excited to be part of an amazing community that is doing such fabulous work! - Next steps to move this initiative forward! - The apparent willingness of funders and researchers to take radical approaches to patient engagement. - Meeting diverse people involved in many different areas of POR. I felt connected with others there. - I feel excited about the connections and the energy surrounding the methods cluster. I see that there will be great opportunities moving forward and that a community of practice will be established. I am hopeful that this event will spur on some new partnerships and collaborations. - The passion of people in the room to do this work!

Is there something about the Patient Engagement Methods Cluster that you feel concerned about? (if so, please describe briefly).

- I am concerned the PE Methods Cluster will be urban-centred and developed from that stance. Also well, tiny traditional disease focused vs social (education, SES) developments to help address health care issues which we need so badly in rural settings. Secondly, I missed hearing the funders perspective and what PE methods opportunities are coming up in the near future-now I do not know (and have to find time looking this up, sorry). - time it takes to generate knowledge that we need now to facilitate patient engagement in research - How do we keep patients involved without taking advantage of them. (We need compensation guidelines stat!) - Not at this time - I am always interested in engaging a wide variety of patient partners in research projects. The one thing I am conscious of would be to ensure that we recruit new and diverse patient partners so they can continue to add to the patient perspective. - the process for defining projects. Absolutely not a meaning ful process to generate ideas and prioritize them in the time allocated at the visioning session. - n/a - I'd like to see dedicated resources for Indigenous methodology research - No, not at all! - The topic still feels daunting, it was clear during the workshop that many avenues need work and I worry about chasing too many at once. - The tensions between pragmatic and critical approaches to PPI were not addressed, except tangentially in the brief aside Erin made re: terminology around "patient" as the language of the Cluster. It is important to acknowledge this tension, even as we try to be inclusive. - My only concern is how do you keep the initiative and momentum going forward with such a wide array of people. - None that I can think of now. - How to connect with those who are "invisible" and are hard to reach and engage with? - The continued lack of engagement of important policy makers. -I don't think much was accomplished by the event. There were no specific outcomes and no specific discussion about cluster development or cluster visioning. - No