Your input supports access to clear, compassionate and actionable cancer information.

In 2022, the Canadian Cancer Society (CCS) partnered with Women’s College Hospital to study barriers to accessing and using virtual cancer care and strengthen support for more effective and equitable experiences. Some of the people who participated in this research were also members of the Cancer Experience Panel.

Building on this work, CCS engaged panel members to co-design our virtual cancer care resources. The topics were informed by the research, and the co-design process helped prioritize the content and identify the most helpful formats.

What we changed

Using the research findings and feedback from the focus groups, CCS developed more practical formats, including videos, checklists and storytelling content. Changes were shaped by what we heard was most important for usability, organization and how information is shared. 

We learned that a quiet space, reliable Wi-Fi and privacy at home are not always available. This led to more realistic examples of where and how to access virtual care when these supports are limited. We also emphasized the role of caregivers and supporters, contributing to clearer prompts to think through preferences and privacy.

We also reinforced the need for accessible formats, captions, the ability to pause or rewind, and companion formats like transcripts and checklists so people can engage at their own pace. We highlighted the importance of clear, practical organization across different phases of the cancer journey, making content easier to navigate. Finally, we emphasized the importance of how and where information is shared, including the need for it to feel credible and be available through trusted clinical and community pathways.

Together, this feedback helped us take more concrete, supportive steps so people can feel more confident in using virtual care.

Through focus groups, usability testing, and a survey, panel members helped shape improvements to Cancer Trials Canada, a national website that provides patient-focused information about clinical trials open to enrollment across Canada. Participants described searching for trials as an emotional process where warmth and human connection matter alongside functionality.

Input also surfaced barriers, and we heard that:

• Too much medical jargon or technical detail can lead to confusion and be overwhelming.
• Inconsistent search and filtering functions can make navigation harder, especially on mobile devices.
• We need to design for different needs and preferences.

What we are working towards

We’re improving how we present and support clinical trial information and plan to add clear, plain language summaries by late 2027. These summaries will help people understand what participation involves and what to expect. We’ll balance scientific accuracy with empathy and accessibility, so the information feels trustworthy and approachable. We’re also strengthening contact pathways so it’s easier for people to connect with trial teams, ask questions and feel supported through the process. Finally, we’ll explain privacy and trust more clearly, using understandable language so people can make informed decisions about how their information will be used and protected.

These recommendations will help strengthen the Cancer Trials Canada website. They will help more people across Canada access credible clinical trial information and feel reassured and hopeful as they explore their options. 

With support from Manulife, CCS held focus groups to better understand the financial strain that can come with cancer treatment and recovery, and to identify how our information can better address the challenges people face. Panel members shared what would make support feel more practical and easier to access. We heard that:

• Many people think about financial strain in “big picture” terms at first, but the burden often builds through everyday costs, like parking, travel, childcare, and missed work.
• Even when help exists, people have to piece together scattered information, interpret complex eligibility criteria, and manage paperwork without consistent guidance.
• Participants also want connection with peers who have similar experiences and can lead with empathy and practical knowledge.

What we are working towards

These findings are shaping a longer-term plan to improve financial information and navigation, so that support feels accessible, personal, focused, and easier to find and use. They will also inform the content strategy for a future collection of educational tools, products and resources to help more people in Canada affected by cancer manage the financial burden.

Your insights will help us offer more connected, practical guidance that meets people where they are during a challenging time.

Across these initiatives, we’ve seen that the challenge isn't only access to information. It's about helping people understand where to begin, what matters most and what to do next. 

Some of this is practical, like using layered content, shortcuts, and clear “next step” cues. We also learned the value of human support, including connecting people to the Cancer Information Helpline and other services we offer. Engaging people with lived experience of cancer has also affirmed that finding and using information while navigating cancer is deeply emotional. Your involvement helps ensure our resources are not only accurate, but also usable, comforting, and grounded in real experience.

Thank you

We sincerely thank our Cancer Experience Panel members and everyone who shared their expertise on these projects.

Our information and resources are stronger when we design them with, not just for, people affected by cancer. You are helping create a stronger sense of connection, understanding and support for people affected by cancer. We are grateful for your valuable insights and continued involvement as we learn and improve together.