Looking Ahead
I will be honest: I started my proposal at the wrong end, with the solution. My original topic was improving cancer screening participation among adults with intellectual and developmental disabilities (IDD) through accessible health communication resources. It was not until I received feedback that I stepped back and asked whether my research actually showed a problem for the IDD community, and which social determinants of health were behind it.
What I know so far is that people with IDD do not necessarily get cancer more often (Kennedy et al., 2026). The bigger issue is that when cancer is diagnosed, it is more likely to be at a later stage for some cancers (Mahar et al., 2024). What stood out to me is that the inequities do not start at diagnosis. They emerge from screening through survivorship, and I have been thinking about them across four levels. For individuals, it can come down to communication needs and consent. For families, caregiver knowledge gaps can make it harder to support informed decisions. In the community, health information is often inaccessible or not adapted to easy-read needs. At the societal level, systemic barriers include practitioner knowledge gaps and inaccessible equipment for physical exams (MCD Global Health, 2026).
The Ottawa Charter (World Health Organization, 1986) helped me see why pausing and stepping back was necessary. My original idea, accessible resources, sits mostly under developing personal skills, which is only one of five action areas. Looking again, I can also consider healthy public policy, supportive environments, community action, and reorienting health services. The Charter's five action areas should help me stay focused on the problem instead of defaulting to one solution.
My learning goal is to follow the health problem upstream to its root causes while keeping the people impacted at the centre. I am most interested in learning about the social, environmental, and political systems that create and reinforce these inequities. I am nervous about doing justice to the experiences of the IDD community when I am not part of it.
Looking ahead, I think the hardest part will be staying in problem mode instead of jumping to solutions, since I have already done that once. I also want to keep the voices of people with IDD alongside the data.
What I most want to learn about is autonomy. What role does it play in health care decision-making for people with IDD, and what role do caregivers and families play when informed decisions are being made? Autonomy affects every level I have described, from consent to screening, to how information is shared, to how cancer treatment decisions are made.
References
Kennedy, O. J., Chauhan, U., Gorman, L., Lorigan, P., Merriel, S., Van Staa, T., Wright, A., & Ashcroft, D. M. (2026). Cancer diagnoses, referrals, and survival in people with a learning disability in the UK: A population-based, matched cohort study. The Lancet Regional Health – Europe, 60, Article 101519. https://doi.org/10.1016/j.lanepe.2025.101519
Mahar, A. L., Biggs, K., Hansford, R. L., Derksen, S., Griffiths, R., Enns, J. E., Dawe, D. E., Hallet, J., Kristjanson, M., Decker, K., Cobigo, V., Shooshtari, S., Stirling, M., Kelly, C., Brownell, M., Turner, D., & Ouellette-Kuntz, H. (2024). Stage IV breast, colorectal, and lung cancer at diagnosis in adults living with intellectual or developmental disabilities: A population-based cross-sectional study. Cancer, 130(5), 740–749. https://doi.org/10.1002/cncr.35068
MCD Global Health. (2026, January 27). Accessibility and cervical cancer screenings. Screening for All. https://mcd.org/screening-for-all/updates/accessibility-cervical-cancer-screenings
World Health Organization. (1986). Ottawa charter for health promotion, 1986 (No. WHO/EURO: 1986-4044-43803-61677). World Health Organization. Regional Office for Europe. https://www.canada.ca/content/dam/phac-aspc/documents/services/health-promotion/population-health/ottawa-charter-health-promotion-international-conference-on-health-promotion/charter.pdf
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