Institute of Genetics – Patient Engagement Workshop
January 30, 2023

Purpose of workshop

The Canadian Institutes of Health Research Institute of Genetics (IG) is working to build approaches, systems and structures that support meaningful engagement with a diversity of patients and caregivers. The purpose of the workshop was to hear from a diverse range of patients and caregivers with lived experience of genetic conditions about how they might like to be involved in research and the work of the Institute of Genetics.

Workshop participants

We asked interested patients and caregivers to apply to attend the workshop so that we could ensure diversity amongst the participants. We advertised the opportunity broadly, such as on twitter, through the IG’s newsletter, and through contacts at relevant organizations (e.g., Canadian Organization for Rare Disorders, Cystic Fibrosis Canada). See Appendix 3 for more details about operational aspects of the workshop, including the approach to recruitment of participants.

We received over 300 applications. We selected approximately 30 applicants to participate in the workshop, with a focus on ensuring diverse representation of experiences and perspectives. See Appendix 2 for details about participant demographics.

Agenda

The agenda was structured to provide background information to workshop participants about the Canadian Institutes of Health Research and IG. To give ideas about how patients can work with institutes, we had a presentation from the Institute of Musculoskeletal Health and Arthritis about the work of their patient advisory group. To highlight important topics in patient engagement in research, we also had two invited patient speakers who addressed ableism, and diversity in health research. See Appendix 1 for the full agenda.

After the presentations, workshop participants were divided into small, facilitated discussion groups. They were asked to discuss how they would like to be involved with the IG and research and the barriers they might face in doing so.

Themes from discussion groups

Many discussions throughout the workshop addressed aspects of health care and the health care system. We documented these discussions, as they are important issues and can benefit from research, but we focus the summary below on issues specifically related to research and/or IG.

• Patients are often experts in their own conditions and that expertise needs to be respected by researchers.
• Research should be done in partnership with patients.
• Training is needed for researchers about how to partner with patients in research.
• Opportunities for patient partners to connect with, and mentor, each other.
• Need for communication to the public about research in genetics.
• Ensure inclusion, diversity, equity, and accessibility in patient partnership.
• Compensation for patient partners is important as a way to recognize their expertise and increase diversity among patient partners.

Evaluation of the workshop

The day after the workshop, we sent an anonymous survey for participants to provide an evaluation of the event and allowed 2 weeks for participants to respond. We used Version 2.0 of the participant questionnaire from the Public and Patient Engagement Evaluation Tool by Julia Abelson and the PPEET Research-Practice Collaborative (2018). Participants responded to items about the extent to which they had the support they needed to participate in the workshop, felt heard, felt their contributions would have impact, and felt the workshop was a good use of their time.

Of the 31 participants, 25 completed the evaluation (80.6%). The average score on each item ranged from 4.0 to 4.6, on a scale from 1 (strongly disagree) to 5 (strongly agree). The high levels of agreement indicate that the workshop was well received by participants.

The evaluation also included open-ended questions, allowing participants to indicate areas of strengths and for improvement. Participants noted many strengths of the workshop, including the variety of speakers, how time was managed during the workshop, the opportunities to hear from other patients, and the different aspects of the workshop that supported accessibility. A main area for improvement noted by many participants was that they wanted to have more time for sharing their stories and hearing from each other. In a final free-text box, many participants expressed their gratitude for the opportunity to participate in the workshop and their enthusiasm for future involvement.

Next steps

Participants shared a clear desire to be involved with research. The significant interest in the workshop (over 300 applicants), combined with the current climate of rapid advancement in genetics and genomics research and its translation to clinical diagnosis and treatment, indicates a need to provide structure for patients and caregivers to be meaningfully engaged in research. IG has multiple levers to facilitate engagement of patients on research projects, which include providing guidance, offering training and workshops (to patients and the research community), and leading in setting expectations about how patients should be engaged in genetics and genomics research.

Given that workshop participants identified needs that would benefit from ongoing engagement with patients, IG plans to develop an advisory group of patients and caregivers who can work with the IG over the long term. Other Canadian Institutes of Health Research Institutes (Musculoskeletal Health and Arthritis, Human Development, Child and Youth Health, Infection & Immunity, and Aging) implemented similar approaches with their respective communities, thereby providing models that can contribute to the development of the advisory group that IG will develop.

Some action items that such a group could be involved in developing include:

• A module to train researchers about patient engagement in genetics and genomics research, which could be added to the Institute of Musculoskeletal Health and Arthritis' basic curriculum offering;
• Communication to the public about genetics and genomics research; and,
• Approaches to patient engagement in genetics and genomics research that center inclusion, diversity, equity, and accessibility.

The benefits of establishing an advisory group would be many. For IG, we would have a mechanism for engaging a greater diversity of patients and caregivers. This is important for many of our activities and is a key aspect of our 2022-2027 strategic plan.

We also expect that this group would bring forward suggestions and priorities that we could find ways to support or integrate into the IG's activities. For example, the patient advisory group at the Institute Musculoskeletal Health and Arthritis initiated the training modules for patient engagement in research.

Importantly, we expect the group would benefit from their involvement. For example, we know that patients and caregivers appreciate being able to connect with each other, to learn about genetics and genomics research, and to have an opportunity to share their experiences in ways that can lead to meaningful change.

Appendix 1: Workshop agenda

January 30, 2023

11:30am-12:00pm (Eastern)

• The Zoom room will open half an hour prior to the start of the workshop for anyone who would like to join early to chat

12:00-12:15

• Opening remarks & land acknowledgement
  • Christopher McMaster & Jillian Banfield

12:15-12:30

• Overview of Institute of Genetics & purpose of today's workshop
  • Jillian Banfield

12:30-12:40

• Personal reflections on the importance of patient engagement at the Institute of Genetics
  • Isabel Jordan & Ian Stedman

12:40-13:10

• Patient perspectives about the need for clinical research that addresses diversity and under-researched areas
• Discussion with Sudi Barre

13:10-13:40

• Example of patient advisory group at the Institute of Musculoskeletal Health and Arthritis
  • Dawn Richards & Linda Hunter

13:40-13:55

• Break

13:55-15:15

• Ableism & patient engagement in research
  • Gabrielle Peters

15:15-15:30

• Break

15:30-16:30

• Facilitated discussion in small groups
  • How would you like to be involved with the Institute of Genetics?
  • What barriers do you have, or anticipate having, in working with the Institute of Genetics?

16:30-16:50

• Report back to whole group

16:50-17:00

• Wrap up: identify next steps, thank you
  • Christopher McMaster & Jillian Banfield

Appendix 2: Workshop participants

Participant names

• Tucker Bottomley
• Merv Carr
• Maxime Cauchon
• Catherine Côté
• Rajib Das
• Amanda Doherty-Kirby
• Jolie Gan
• Katherine George
• Sue-Ann Gravel-LeBlanc
• Maan Hanna
• Marilyn Hew
• Lori Igbede
• Sherri Jones
• Rosemary Kirby
• Bernadee Koh
• Bremen Lang
• Ariane Laporte
• Danielle Lozon
• Anaïs Mathers
• Serena C McIllwraith
• Tristan K McIllwraith
• Anastasia Mercier Mckenna
• Justin Miles
• Benjamin Moyles
• Denis Picard
• Talha Rashidi
• Jessie Taylor
• Serena Thompson
• Gwen Young

Participant demographics

Participants ranged in age from 19 to 69, with a median age of 38 years. Fourteen participants indicated a range of racial identities, including Black, Indigenous, Middle Eastern, South Asian, East Asian, Latinx, and mixed. Seventeen participants described their racial identity as white.

Below is a summary of the other characteristics that participants provided as part of the application process.

Primary language

• English: 24
• French: 7

Gender identity

• Woman: 19
• Man: 11
• Non-binary: < 5

Perspective

• Patient: 22
• Caregiver: 5
• Both: < 5

Disabled

• No: 7
• Yes: 24

Self-described income level

• Low: 14
• Average: 14
• High: < 5

Rural or urban

• Rural: 7
• Urban: 23

Region

• Atlantic (PEI, NB, NS, NL): 8
• Central (ON, QC): 17
• West (BC, AB, SK): 6
• North: 0

Appendix 3: Detailed operational report

This appendix details much of the planning and operational aspects of the workshop to help others involved in patient engagement work understand our decisions and benefit from lessons learned.

Application process

An important goal of this workshop was to hear from patients and caregivers who are often not included in patient engagement activities because the supports are not in place to ensure their participation. With that goal in mind, we decided to have an application form with an introductory page indicating that we wanted to hear from a diverse range of people and that no prior experience was required. We asked applicants to provide demographic information so that we could select a diverse range of participants.

We also provided access notes at the time of advertising the application form. We included key access notes, like the time of the workshop and the virtual platform. We indicated that participants could receive $250 for their participation, should they wish to be compensated for their participation (in alignment with IG's compensation guidelines). We also indicated that the workshop would have simultaneous translation into French. We asked applicants to indicate whether they would need CART (communication access realtime translation), sign language interpretation, or any other access supports.

We left the application form open for approximately 6 weeks. After reviewing applications, we provided approximately 6 weeks' notice to those who were accepted so that they could make arrangements to be available for the workshop.

Along with the email accepting participants for the workshop, we included a link to a secure online form for them to provide details that would be needed to issue their honoraria payments after the workshop, if desired. We also asked participants to provide a short biography that could be sent to other workshop participants. The biographies were meant to help participants know who else was in the room and to mitigate some of the disconnections that can arise in online meetings when people do not have a chance to introduce themselves.

Before the workshop

The week before the workshop, we sent an email reminder to workshop participants with a guide to the workshop that included the agenda, short biographies of all the speakers and participants, and instructions for French participants about how to access the live audio translation during the event.

During the workshop

The Team Lead for Patient Engagement facilitated the overall meeting. We opened the meeting a half hour before the official start so that participants could join early if they wanted to say hello and check their technology. The French interpreters also joined at this time so that they could be assigned to their roles in Zoom. The English and French CART captioners joined slightly before the official start of the meeting.

After opening the meeting, the Team Lead described the accessibility functions that were designed into the meeting. She also covered Zoom etiquette, including asking participants to ensure their first names were showing, encouraging them to add their pronouns to their name, and asking participants to keep their cameras turned on, if possible, but acknowledged that turning them off was okay. It was also mentioned that the meeting would be held under Chatham House Rule, meaning that that none of the discussions or comments would be attributed to any of the participants.

With a tight schedule and a desire to respect the time for breaks, we tried to keep speakers on time and manage participant questions. We encouraged use of the chat box to allow participants to interact continuously throughout the workshop and share comments and questions that we did not have time to address.

The French participants reported that the interpretation was of high quality. One of our breakout room facilitators was a bilingual patient, so she monitored the chat box throughout the day to help with engagement of French participants.

We did get slightly behind during the schedule but tried to respect the time allocated for breaks. The Team Lead turned off her camera and mic so that participants would have signals for the start and end of breaks. Participants were also encouraged to take breaks as needed throughout the day.

Breakout rooms

We divided participants into three groups for discussion. We decided to make one group French-only so that participants could speak freely without waiting for translation. The group was facilitated by a bilingual (English/French) patient partner, with support from a bilingual (French/English) member of the IG team. The other two groups were facilitated by the patient members of IG's Institute Advisory Board, with support in one room from a staff member from Genome Canada, and in the other room, a staff member from Canadian Institutes of Health Research.

Due to being behind schedule, we had less than the full hour initially planned for these group discussions. After the discussion, we reconvened in the main room and each group shared some key takeaway messages from their discussions.

Barriers and lessons learned

Access

Time and format

An online event on a Monday necessarily excludes people who are not able to participate online and those who cannot be available at that time of day. Most notably, youth who are in school would be unlikely to participate, given the conflict with the school day. However, the online event allowed people to participate who may not be able to travel to an in-person event. Given that most participants identified as disabled and travel can be especially challenging for disabled people, the online format may have allowed for greater accessibility, including for those from rural and remote areas.

The online format also allowed participants to contribute in multiple ways. Some participants felt comfortable speaking up, whereas others appreciated being able to share their thoughts in the chat box. Zoom also recently added reactions in the chat box, so participants could add reactions and replies to each other's comments, adding to the communal feeling of the group. This type of participation was well used throughout the workshop.

French interpretation

The French audio interpretation was well received, but we could have communicated better to French participants that they were also welcome to ask questions in French and that those would be translated into English for the rest of the participants. We learned that the French interpreters would benefit from having slide decks and speaking notes in advance of the meeting to allow them to learn any unfamiliar terms. We also learned that wired microphones, either included in headsets or standalone desk microphones, would be needed for anyone with a main speaking role to ensure high quality interpretation.

Although speakers were told about the presence of French participants, all of them (except for Institute of Genetics presenters) designed their slides only in English, so French participants may have missed some of the content that was shared visually.

CART and sign language

The CART captioning was high quality but, given that it is accessed through visiting a separate website, instead of being embedded into Zoom, it was more challenging for participants to use. We did not have any participants who indicated that they would need sign language interpretation, so we did not include such interpreters in the event.

Compensation

Issuing honoraria payments to participants implied many requirements. To do so, personal information had to be requested from participants, including social insurance numbers as well as a form signed in ink if they wish to receive direct deposit, in order to comply with institutional policies. The IG team filled out the forms as much as possible to reduce the burden on participants, but the process still required individual correspondence with the participants. It was also not possible to provide accurate timelines to participants about when to expect their payments given the multiple steps involved in the process.

Another barrier around payments is that some people cannot accept payments due to possible impacts on benefits they receive. It is important to also hear the perspectives of these people, so alternative approaches need to be considered to ensure inclusion of these participants.

Agenda

We decided on a half-day meeting to not overburden participants with a multi-day meeting. However, some participants did express in the evaluation that they felt the meeting was long. Given that we had participants from every time zone in Canada, we also had to be mindful of not starting too early or ending too late.

Participants had a clear desire to share their stories and connect with each other. More time and opportunities for the participants to speak is advisable. It can be challenging to balance the proportion of time on presentations that are necessary to give context and inspire ideas with time spent on discussion. Longer-term engagement with a group of patients and caregivers would help in allowing the participants to share their perspectives and give them opportunities to build capacity. This approach to engagement would also work for shorter meetings so that participants do not feel strained by the time and energy needed for the meeting.

Date modified:

2024-10-22