Resources for researchers

Engaging people with disabilities in research

YES Health logo

The goal of Dr. Lisa Iezzoni’s PCORI-funded research project, “Persons with disabilities generating quality metrics to inform integrated care,” was to develop quality-of-care measurements that reflected and respected the lived experience of people with disabilities, and to use these metrics to improve quality of care received by people enrolled in One Care, a Massachusetts demonstration project.

Potential study participants either had significant chronic physical disabilities or a mental health diagnosis with impaired functioning in activities of daily living (ADLs or I-ADLs), and some may have had a mental health diagnosis secondary to a physical diagnosis. They were low-income and lived in the community (not in nursing homes), and were diverse in age, type of disability, educational status, ethnicity, and where they lived across the state.

Naming

The study needed a participant-friendly identity and selected YES Health: Your Experience, Speak up for better health care from a roster of naming options proposed by the Health Communication Core (HCC) because it was empowering, positive, and explicitly stated the study’s call to action.

Website

The study also needed an accessible website that, in combination with other communication channels like phone and email, could help collect participant-generated data on quality-of-care issues and create a community of study participants advocating for change.

To meet the needs of the site’s visitors, content needed to be easy to read and at a low-literacy level, accommodate a short attention span, and be concrete and action-oriented. It also needed to be helpful, providing prominent guidance on how to use the site (supportive messaging, frequent prompts, and easy access to additional support) and how to contact study staff.

Visually, it required clean design and simple organization, a clear and readable font, colors with strong contrast, and easy-to-select links. Photography was used to convey a sense of community and reflect diversity of culture and mobility, to provide cues to invisible disabilities.

Accessibility and technical requirements

Before we began building the site, HCC worked with the study team to develop a detailed description of the website’s technical needs to determine the best way to meet those needs efficiently while providing the most user-friendly site possible. Features that maximized the site’s accessibility included:

  • “Skip to content,” “Skip to main content,” or “Skip navigation” links
  • “Return to top” or “Next” prompts on scrolling pages
  • Options to view the site as text-only with no images (i.e., users can dynamically switch templates)
  • Alt text for all non-text content
  • Easily clickable link text
  • No blinking or flashing text or graphics
  • Consistent placement from page to page

A text-only comment form provided participants with an online option for reporting their experiences with One Care providers. After being submitted, responses were emailed to the dedicated study email address and were identifiable via participants’ unique IDs. The website also encouraged participants to provide feedback via other communication channels based on their personal preference, including phone conversation with study staff or personal email to the study email address.