What Is This Project About?

This project looks at what different people—like members of the public (citizens), parents, doctors, and other important groups—think about screening for Type 1 diabetes (T1D). Screening means testing people for a disease before they have any signs or symptoms. The goal of this project is to learn what these groups think are the benefits and risks of T1D screening and how to make it work well for everyone.

What Will The Project Achieve?

This project will:

  1. Look at what members of the public and key groups think about T1D screening.
  2. Offer practical advice on how to:
  • Educate and involve parents and caregivers of young children in screening,
  • Create helpful tools for people make decisions about screening,
  • Set up the best ways to screen children and track their health,
  • Locate care and support that families will need if a child is identified to be at risk for T1D.
Graphics of people having virtual meetings, talking and highfiving each other. There are arrows starting from the conversations and going to the graphic of a report in the middle of the picture.

Why Is This Important?

Screening for T1D can help find people with the disease early, which could lead to better treatment and fewer serious health problems in the future. It may also save the healthcare system money. However, there may be some downsides, like causing unnecessary worry or possibly adding extra costs to the healthcare system.

It is important to figure out if the benefits are bigger than the risks and to develop strategies to increase the benefits and decrease the risks. To do this, we need to hear from different groups of people and understand their concerns and opinions.

What Is The Background?

Population-based screening for T1D can have many benefits:

  • Early detection: Finding the disease early means a lower chance that the disease will first present with diabetic ketoacidosis, a life threatening event.
  • Fewer long-term health problems: Early treatment can help avoid serious health issues later.
  • Psychosocial support: Early screening can provide emotional and social help to people who are diagnosed.
  • Cost savings: The healthcare system might save money in the long run.

But there are also some risks:

  • Over-medicalization: This means too much focus on ongoing testing and treatment when it may not be needed.
  • Psychosocial harm: Some people may feel stressed or worried about the screening process.
  • Higher costs: The healthcare system might spend more money.

This research is all about weighing the good and bad of screening to create the best plan for everyone.

Methods Used In This Project

We will use citizen panels and collaborator (stakeholder) dialogues to gather opinions from different groups.

  • Citizen Panels: We will have groups of people from the general public (citizens) discuss their views on T1D screening. These panels will be based on methods developed by the McMaster Health Forum.

Before each panel, we will send participants an easy-to-read package of information about T1D screening. The panels will include a variety of people, with different ages, genders, and backgrounds, including caregivers of children with T1D and youth (with and without T1D). We will also have one panel in French.

The panel discussions will happen online, and participants will share their views in the form of group discussions. Everything will be recorded and transcribed. Afterward, we will look at the common ideas and differences shared by the panelists to understand key values and preferences.

  • Collaborator Dialogue: We will also have a discussion with a group of 18 to 22 experts. These will include doctors, scientists, policy makers, and people with lived experience of T1D.

They will review the same information provided to the citizen panels, including their feedback from the discussion groups. Together, they will work to find an approach to T1D screening that is both acceptable to citizens and practical for healthcare workers and screening laboratories.

After this discussion, we will create a report to help guide the development of the screening program. Over the following year, we will continue to gather new research to see if changes need to be made to the program.

What Happens Next?

We will talk to different groups of people and ask them what they think about T1D screening. Their answers will help guide the creation of a screening program that is fair and effective for everyone.

Citizen Engagement and Stakeholder Dialogue Project Progress Tracker

This section will provide timely updates on the progress of the project, highlighting key milestones, achievements, and any developments as they become available.

Least to most recent updates:

  • On September 23, 2024, Dr. Michael Wilson of the McMaster Health Forum presented the citizen engagement panel summary report at the CanScreen T1D Inaugural Launch event. Dr. Wilson shared that members of the public broadly support T1D screening but want to ensure it was free and accessible to everyone. Collaborators highlighted the importance of further research and increased awareness of screening among the public and clinical partners. Click here to view the PowerPoint presentation.
  • The McMaster Health Forum developed evidence briefs, summaries, and video interviews from the citizen panels and stakeholder dialogues. Click here to view the products.