Pre-Assessing Needs for Inclusive Online Patient Engagement

Suggested Best Practices for Research Teams

By Angela Tessier, Magi Hadad & Ogai Sherzoi

In this blog, we summarize perspectives on pre-assessing needs for online engagement shared in an online Zoom panel with patient and public partners Angela Tessier and Magi Hadad. Angela and Magi are members of the Centre for Healthcare Innovation (CHI)’s Patient and Public Engagement Collaborative Partnership.

You can view a recording of the panel discussion on CHI’s YouTube channel: https://youtu.be/f7cvjywWD6Q.

As we are all well-aware, the COVID-19 pandemic has been a period of disruption and transition; a shift in the way we interact and stay connected with colleagues, as well as patient and public partners. As the situation continues to evolve, we need to continue to be mindful of our strengths and resiliency, and how quickly we as humans are able to adapt to situations and use technology to our advantage. However, it is imperative that we move forward with an anti-oppressive and social equity lens. In other words,

We need to acknowledge how social constructs such as socioeconomic status, ability, age, and spoken language (e.g. English as a second language) — to name just a few — create barriers for people to be able to stay connected and fully participate using online methods of communication.

More than ever, we need to develop best practices to ensure no person is blocked from opportunities to stay connected, engaged, and share their perspective and voice. Read on for suggestions on how to internally and externally assess what is needed to ensure online engagement meets the needs of both patient and public partners, as well as research teams.

Ensuring Your Research Team is Ready to Engage

With everyone doing their part to flatten the curve by practicing physical distancing, research collaborations and engagement with patient and public partners has quickly moved to online spaces. We need to slow down and reflect as teams on ways we can work to create safe and inclusive spaces online.

We encourage open and honest conversations within the research team around capacity, funding, timelines, and creating a plan of action to address patient and public partner needs and mitigate barriers to involvement. Once the team has internally assessed their ability to engage meaningfully online, they need to speak with patient and public partners about how they want to be engaged and identify their needs to be able to fully and meaningfully participate. It would be negligent — indeed disrespectful — to ask patient and public partners to identify their needs, and then not have a plan to be able to address these when the time comes to engage.

Considerations for Inclusive Online Engagement

Some important factors for research teams to consider when working to create inclusive online spaces include:

Sense of Belonging

Having a sense of belonging is a human emotional need, a desire to be part of something that is greater than one’s self. The majority of patient and public partners join research teams with the goal of making a difference through research. In the panel, Magi and Angela articulated how physical distancing has created social isolation for many, such that now more than ever we need to create a sense of belonging. This may mean calling up patient and public partners and asking how they are doing, with the sole purpose of connecting, rather than discussing research project issues or progress.

“A sense of belonging is particularly pertinent now, when clearly we are physically so isolated.”

Safety and Confidentiality

Some people may not have private or even quiet spaces in their home, and may be sharing space with loved ones or roommates in closed quarters. Patient and public partners may not want their families or cohabitants to know they are a patient, or that they have a particular condition — they may not have yet disclosed this information or do not wish to do so. This can result in patient and public partners not feeling safe to participate and voice their experiences in online spaces.

Most research teams are using easily accessible platforms such as Zoom or WebEx with video capabilities, which has created challenges for people who are not comfortable being captured on video and/or do not wish to share their private space. We must also consider cultural differences around appearing on video. Bringing videoconferencing into peoples’ homes means exposing how they live, and who they live with, among other privacy concerns. While virtual backgrounds or muting video may help to alleviate some concerns, these are not decisions that should be made solely by members of the research team. This is yet another reason why it is so important to have one-on-one conversations with patient and public partners around their comfort and safety, and the best ways to communicate and share knowledge with them.

“Many people do not want to be seen where they live… clearly in my background here, you have a sense of the space in which I live, and what comes with that is an entire economic picture.”

Accessibility of Online Engagement

Not everyone is comfortable using technology and online tools, and we need to be mindful of different skills and abilities when working towards inclusive online engagement. For example, people with language barriers may have difficulty understanding and conveying their thoughts in the language used in engagement activities.

For in-person meetings, we are able to take time to act out our thoughts and use non-verbal communication and cues to create shared meaning and understanding— this is difficult, or even impossible, in an online or virtual meeting.

“Refugees’ experience already has a lot of stress, especially in culture and language barriers — and that we experience in face-to-face meetings or when we see people. Sometimes when we meet with people, we are required to act or perform to deliver the meaning of a word … that scenario is so different and difficult when we’re in an online meeting.”

Some people may not be fully literate in writing and reading in their own language, let alone in different languages (such as English or French) —and they may not be comfortable sharing this information, for fear of being perceived differently by the research team or other patient and public partners. Some people are storytellers and require physical connection with others to fully convey their perspective; some are hard of hearing, have difficulty seeing, and/or have neurological or other physical conditions that limit the amount of time they can spend in front of a screen.

From the youth perspective, although most are familiar with using different apps and technology, this doesn’t inherently mean they are familiar and comfortable with having formal virtual meetings. Also consider how their schedules may have changed for other commitments in their lives.

“Not everyone’s comfortable with the apps that we’re using. I know myself and my friends, we usually talk over Instagram, for example, or FaceTime, or WhatsApp — but more formal [apps], you feel like you have to sit and talk with that other person. That would not be comfortable for some…”

As Magi emphasizes, each person’s experience and needs are unique, and this is one reason why speaking with patient and public partners ahead of time to determine what supports are needed and ensuring these are in place, are critical steps to creating an accessible and safe online space.

“Just ask — what’s the best way for you to be comfortable with us? What’s the best way we can communicate — over a text, over the phone, or over a video call?”

A few examples of accessibility supports in videoconferencing include:

• Having closed captions or subtitles so people can read and follow along;
• Recording sessions (with permission from everyone attending) so people can go back and re-watch to catch things they may have missed;
• Sending materials and any slides ahead of time so people can review and process the information;
• Being flexible — considering using visuals such as the whiteboard, allowing people to annotate slides or shared screens, using ‘breakout rooms’, and/or having shorter and more frequent meetings;
• Taking time to establish (as a group) some ground rules for speaking and sharing so everyone can participate; and
• Following up with people individually to see if they require additional information or have input they were unable to share in a virtual meeting.

Access to Technology

Technology has been a great tool for most of us to be able to stay connected and continue our work safely from home, but this is not the case for everyone. Before setting up online meetings, it is important to have an understanding of the barriers and challenges of using technology to connect.

In rural and remote areas, and even within urban centers, there may be limited (or no) internet access and/or cellular reception. Bandwidth may be reduced, both in rural/remote but also high-density areas (such as apartment complexes) and result in choppy or lagging video and audio, making it difficult for patient and public partners to follow along and contribute to live online conversations.

“Some people, we are now realizing, either have very very poor WiFi — or no — WiFi at all. Our coffee shops, bless them, have wonderful access, but clearly now they are closed.”

Some people may be limited to using their phones to connect virtually, and experience barriers with being able to download, install, and run videoconferencing apps. Some patient and public partners may only have access to older technology, and experience similar barriers with using apps and online tools. It also may take time for people to get comfortable with using different tools and online spaces. It is important to not only discuss these potential barriers ahead of time, but also provide support to ensure people can access the materials and spaces you wish to use to connect. For example, this could include:

• Dedicating a portion of your research budget to providing technology (such as tablets or phone cards) to patient and public partners;
• Providing instructions and direct support for the use of online technology and videoconferencing apps; and/or
• Having meetings dedicated solely to establishing comfort and safety in the online space.

How to Conduct a Pre-Assessment of Needs for Online Engagement

Building relationships and fostering trust are the foundations of authentic and inclusive patient and public engagement activities. During a time of uncertainty and potential isolation, maintaining a continuity of connection through reaching out is important — indeed vital — to these relationships. A simple phone call can demonstrate care and empathy. Conversations with patient and public partners don’t need to be formal. They can be unstructured and flexible in nature, simply just catching up with each other — though not captured by traditional productivity metrics, this is an integral part of patient and public engagement.

When contacting patient and public partners, it’s always a good idea to ask them how they are doing and what is going on in their lives. Allow them to share their experiences, express themselves, and practice active listening (visit our blog on bearing witness for more information and support on this). Some will share more than others — it could be a five-minute conversation, or take over an hour. Validate their feelings and let them know you are available to connect with them if they have questions or concerns about engagement or the research process. This also creates an opportunity to conduct a pre-assessment of their needs, by asking the following questions.

Pre-Assessment Questions

1. How do you feel about our group/research team continuing our work online?
2. We want to make sure you are able to fully participate online. Can you let me know if you have a device with an internet connection?
3. Are you able to use audio and video on your device?
4. Are you comfortable using Zoom or WebEx, or is there another way you prefer to connect?
5. Are there any health or ability restrictions we need to be aware of in order to ensure we are meeting your needs?
6. Has your availability changed? What are the best times to set up a meeting?
7. Do you feel you have space in your home where you are comfortable to freely share your thoughts and ideas?
8. Do you have any suggestions for ground rules when meeting online?
9. Do you have any questions for me or the team?
10. Is there anything else you would like to talk to me about regarding engaging online?

You can expand on these questions as needed to include specific considerations for people you are engaging with (such as childcare needs, or the option for teleconferencing via phone instead of using the internet). Ultimately, the most important factors in successful online engagement are ensuring patient and public partners have shared their needs and preferences for engaging virtually, having open and honest conversations about how distance impacts engagement, and making sure your team is working to address patient and public partner needs in a meaningful way.

About the Authors

Angela Tessier is a member of CHI’s Patient and Public Engagement Collaborative Partnership. Her background is in Science, and she immigrated to Canada from Ireland. She has a Masters in Biochemistry, and worked for many years as a workplace educator in various industries. She also taught internationally-trained professionals as an English as a Second Language (ESL) instructor. Currently, at Red River College, Angela is an Assessment Program Analyst, where she develops assessments and then implements customized solutions to enable students to succeed in their courses. In her spare time, she loves to bike, read, travel, and debate politics.

Magi Hadad is a member of CHI’s Patient and Public Engagement Collaborative Partnership. She immigrated to Canada as a Syrian refugee. She is enrolled in Conflict Resolution Studies and Human Rights at the University of Winnipeg. Magi is an advocate for newcomer, immigrant, and refugee youth, and aims to give back to her community. She is the Co-Chair of the Newcomer Youth Council of Winnipeg, the goal of which is to bring attention to the voices of newcomer youth and their needs.

Ogai Sherzoi is a Knowledge Broker in Patient Engagement at the George & Fay Yee Centre for Healthcare Innovation (CHI).