The Polygon Gallery engaged LET’S in providing on-site feedback for the gallery’s “Velvet Terrorism: Pussy Riot’s Russia” exhibition. The Polygon was interested in exploring how to make the exhibition more low sensory friendly for visitors on their low sensory night. This was an interesting consultation opportunity, due to the exhibition’s overwhelming visual, sonic, and physical intensity, and its densely structured maze-like multimedia environment, including 52 monitors.

LET’S did a walkthrough with gallery staff. LET’S’ staff person has sensory issues and was quite overwhelmed by the exhibition, even as they admired the whole display. We were able to make suggestions on how to reduce the intensity of the sensory overload. It was obvious that staff had already given it a lot of thought. They had great suggestions.

It was  a challenge to reduce the sensory experience because the overwhelm was a purposeful part of the exhibition. We were conscious of not reducing so much that the impact of the display was not felt. Balancing accessibility with the artists’ evocative exhibition was a thought-provoking exercise. We were very happy with the balance that we struck. We heard the event went extremely well. The gallery received positive feedback from neurodivergent folks and visitors, who were unaware it was a reduced sensory night, who benefited from the reduction in sensory stimuli.

The Polygon Gallery engaged Heather McCain in providing on-site feedback on the gallery’s “Velvet Terrorism: Pussy Riot’s Russia” exhibition. The Polygon was interested in exploring how to make the exhibition more low sensory friendly for visitors on their low sensory night. This was an interesting consultation opportunity, due to the exhibition’s overwhelming visual, sonic, and physical intensity, and its densely structured maze-like multimedia environment.

The low sensory event was a success. Visitors who require low sensory were glad to find staff prepared and aware of the various ways low sensory spaces can be supported. There was an adjacent room set up as a low sensory space with stim toys, colouring, and quiet. The Pussy Riot exhibition is purposely sensorily overwhelming and Polygon Gallery worked to lower that without affecting the impact of the exhibit. Some visitors also shared that they didn’t think they would be able to last long and instead were able to enjoy the exhibit as much as they wanted. The staff said it was great to hear such immediate, positive feedback.

LET’S started our relationship with The Polygon Gallery in 2021, providing Disability Awareness and Gender & Sexuality workshops and an accessibility audit. We were pleased to see them make immediate improvements, based on our recommendations. The Polygon Gallery also applied for, and received, funding to increase accessibility. Since that time, we have been in regular contact as they continue to learn about accessibility and the needs of the disability and neurodivergent communities. We look forward to our continued relationship.

LET’S was contacted by the Director of Projects at SFU (Simon Fraser University). They are supporting the SFU Accessibility Project, which was established in response to the enactment of the BC Accessibility Act. They reached out to LET’S as a potential consultant who could support their office with drafting an Accessibility Plan.

LET’S’ name was shared with them by a member of our Accessibility Committee and a colleague who had spoken very highly of one of our workshops. We look forward to proceeding on this project.

United Way’s Period Promise campaign increases access to free menstrual products in communities so that everyone who menstruates can go to work, get to school, access services, and stay connected to their community.

LET’S was contacted by the Capacity Building Specialist of the campaign. They are speaking with a variety of organizations to make sure their work continually meets community needs. After conversing with a LET’S staff member, the campaign supplied LET’S with free reusable and disposable menstrual products to give out at our low sensory spaces. They are hoping to get some useful information on participants’ experiences using reusable menstrual products, with the goal that this data will inform future policy changes that address period poverty in BC, and ultimately help to better serve our communities.

(Illustrations of menstrual products, including calendar, pads, tampons, menstrual cup, underwear, and the pill.)

As more public policy gets written around access to menstrual products, the campaign hopes to better understand what impact reusable products can have as part of building long-term solutions. To this end, they are building a research concept in partnership with community organizations who offer support to those demographics that disproportionately experience period poverty in BC: people living with disabilities, Indigenous peoples, and families making less than $40,000 a year.

They are seeking potential partners to work with. LET’S is planning an event with them for the Spring. More information to come.

Over the 18 years of CAN’s (now LET’S) existence, we have had many requests for services. We were excited to receive a new type of request. We were emailed: “I am an author / illustrator living on Vancouver Island and I am in the process of writing a grant application. For a future project I would like to hear from people in the disability community to help inform the project, and I would like to work with a disability consultant to help me navigate this as well as the content of the story and art.”

As an organization with many book lovers (definitely including our founderExecutive Director), CAN/LET’S of course said yes. We are looking forward to this new project.
We will announce the author and book in a future newsletter.

CAN/LETS participated in the consultation to gather perspectives from patients and community members on the priority health concerns in British Columbia and how future physicians should be trained to meet these needs.

The purpose of the project was to co-create with patients and the public a set of evidence-based guiding principles, models and processes for the authentic, responsive, ongoing and sustainable engagement of patients and the public in the mission, goals, curriculum and delivery of medical education. The goal is to make medical education more responsive to the needs of society.

Guiding Principles for Patient/Public Engagement

• Accountability: Includes transparency, feedback, and shared outcomes.
• Inclusion: People with diverse perspectives are sought and invited to participate.
• Engagement processes are easily accessible.
• Reciprocity: Relationships are mutually beneficial and based on trust and mutual respect.
• Partnership/Shared Decision-Making: University and community partners have equal voices and shared responsibility.
• Co-Production: University and community partners work together to co-develop and co-design engagement processes and activities.
• 2-Way Communication: Communication is open and honest, with clear expectations on both sides.
• Support: Community partners receive the support and information they need to participate fully.
• Different Levels of Engagement: There are diverse opportunities for the community to engage in health professional education (from classroom to committee).

3 different formats (diagram, summary, and descriptive) of the guiding principles are available for download through the buttons here. You can also watch a video of patient/public member’s perspectives on the guiding principles here.

EnGAGE stands for Ethical partnerships with transGender And Gender diverse communities for conducting pharmacoEpidemiologic research.

This project is aimed at ethically engaging transgender and gender-diverse populations in pharmacoepidemiology research.

It is being conducted by Dr. Mary De Vera’s lab at UBC and in collaboration with Dr. Lori Brotto and the Women’s Health Research Institute (WHRI).

CAN/LET’S was identified as a community member/representative with expertise working with and serving transgender communities. CAN/LET’S was invited to participate in a discussion with members of the EnGAGE team and other participants who share our experience.

We spoke with researchers about how they can ethically engage members of the transgender community as collaborators and co-investigators in research. Our insight and expertise will be used to inform best practices amongst clinicians and researchers on fostering ethical and sustainable collaborations with transgender communities.

CAN (LET’S) was invited to take part in a follow-up focus group to provide input on how to evaluate the process of the Virtual Care Educational Products project. The evaluation team wanted to gather perspectives from patients, caregivers and learners experience in participating in this research project.

Results of this research will be presented at medical education conferences and published in academic journals. The following is an abbreviated version of the report.

 

Introduction
The COVID-19 pandemic has resulted in rapid and widespread adoption of virtual care, and clinicians will continue with hybrid care in the future. With this reality comes new challenges, responsibilities as well as opportunities. The goal of the project is to partner with patients, caregivers and learners to co-design learning materials to support virtual care education.

This report is a summary of the result of the second phase of the study: Focus group and individual interviews.

 

Emergent themes:
Analyzing focus group and individual interviews identified five themes demonstrating patients and caregivers experience navigating virtual care.

Theme 1: Technological benefits
Overall, participants expressed positive remarks toward virtual healthcare and recommended continuous in a hybrid format. General reported benefits include greater accessibility, decreased travel time and cost, efficiency, more selections for healthcare services, and greater inclusivity as more members of the care team and family can attend appointments. Participants also referred to increased mental comfort as another beneficial feature of virtual care. They believed this format provides a safer space for people with anxiety, members of 2SLGBTQIA+ community, and vulnerable and immunosuppressed patients.

Participants also identified some disadvantages to virtual care, including a digital divide (i.e., unequal access to suitable technology due to age, ability, socioeconomic status, and network access), lack of best practice in virtual care, confidentiality and privacy, and lack of physical contact and physical assessment.

Theme 2: Communication Skills and Strategies:
Communication skills and strategies refer to participants comments about enhancing communication skills and abilities in virtual format so that the information is being conveyed and shared clearly.

Sub-themes related to this theme include active listening, verbal and non-verbal communication skills, and follow-up appointment summary.

Almost all participants placed a very high value on healthcare practitioners’ communication skills and believed that the nature of the virtual care might cause distraction and ambiguity in communication. Hence, in virtual care, active listening skills, asking open-ended questions, speaking more slowly and clearly, and adding more pauses during conversations are more critical than in a non-virtual format.

When asked about the most important skills students need to know about virtual care, many participants referred to active listening skills, being present and committed.

Several participants also talked about the importance of receiving a follow up email that summarizes everything that are discussed during the virtual meeting.

Theme 3: Participants noted that they “want to be treated with respect” and believed that factors such as proper introductions, demonstrating compassion, getting to know
patients, respecting their needs and expectations, and privacy and confidentiality are critical in establishing rapport, trust and mutual respect in virtual care.

In addition, participants emphasized that virtual care is not just about “writing prescriptions and making a diagnosis”; having a holistic (whole person) view is the key. Highlighting the importance of humanizing the process and making a connection with patients.

Theme 4: Inclusion
The inclusion theme refers to participants’ comments on establishing and strengthening approaches to inclusion, diversity, equity, and accessibility in virtual care. Sub-themes related to the inclusion theme include equity, equal power dynamics, and inclusive terminology.

Participants talked about a divide that virtual care may create due to unequal accessibility to suitable technology based on socio-economic status, age, ability, technology and network
access. Biases were another factor that participants believed could create a divide and exclude a patient from the care team.

Theme 5: Information/Education/Support
The sheer power of education to change behaviors, actions, and thoughts is why this research project is critical for the future of virtual care. When it comes to quality healthcare, participants highlighted how important it is to have all affiliated care team members be thoroughly informed which can include the lead staff physician to the patient in the spotlight. Participants shared several clear benefits of sharing information.

On the other hand, patients should be taught how to access and navigate the virtual platform chosen for the appointment (i.e., how to set up Zoom). From another perspective, medical students are the future of our healthcare and should be educated on best practices to prevent the formation of ill habits.

Theme 6: Professional Presentation
When it comes to healthcare, maintaining a professional practice is of utmost importance to ensure patients feel welcomed and trusting. For virtual care, participants took to note how significant it was for how a physician presents oneself across the phone and in front of the camera. Patients will notice if one is not looking into the camera, or is multitasking by filling out paperwork, or if the attire chosen is more suited for going to the beach; these actions are not appreciated.

Several participants claimed distaste when a lack of coordination was apparent across a healthcare team. Although an advantage of virtual care is its ability to conduct interprofessional care more easily, all team members must be on the same page before interacting with a patient. The spread of different opinions can damage the trust a patient has.

Theme 7: Autonomy
As one of the four pillars of medical ethics, autonomy, the respect for patient’s freedom, plays a significant role in virtual care. With the push to use telephone, email, and videoconferencing platforms for healthcare appointments since the onset of the COVID-19 pandemic, physicians now have more options to choose from for how they can administer their service. However, participants have noted that this choice can be maladaptive if physicians abuse virtual care for their own benefit. Not all patients are comfortable with a telephone or Zoom call and in many instances, they would prefer an in-person visit due to varying and valid reasons. As a result, participants advocated for a more collaborative decision- making process for selecting the method of service.

Enabling personal preference blends itself into other core principles that should be practiced such as welcoming patient’s thoughts, encouraging new questions, and addressing serious concerns. With regards to virtual care, the inherent issue about privacy and confidentiality was echoed across all patients. Is the physician recording our conversation? Is there another individual listening to the conversation?

Conclusion:
The abundant of rich information gained from these focus groups brings to the light the positives and negatives of virtual care. The main belief shared across all groups was that virtual care is here to stay with the critical understanding that improvements must be made. The numerous benefits offered such as increased accessibility and greater inclusivity reinforces virtual care. On the other hand, issues such as a lack of patient preference to disparities with technological access proves the necessity to evaluate virtual care. It is clear that the COVID-19 pandemic forced virtual care to abruptly be incorporated into the healthcare system without much deliberation. However, as with all aspects of the healthcare system, we as patients, caregivers, learners, clinicians, and educators must do our diligence in making changes to yield a better future.

CAN (LET’S) and Vancouver Pride Society have been working together since CAN (LET’S) was hired in 2019 to do accessibility audits of their events.

In February, we met with Joseph, their Community Engagement Manager. We talked about plans for this summer’s Pride events and CAN’s (LET’S) roles and responsibilities.

We look forward to continue working on accessibility at Pride events. Pride should be available and equitable for all 2SLGBTQIA+ folks and our allies. We will have updates over the next few months. Stay tuned!