Over-treatment of thyroid cancer and shared decision-making
Lead Researcher: Susan C. Pitt, MD, MPHS; UW-Madison School of Medicine and Public Health
What is the focus of your research?
Our research focuses on the over-treatment of thyroid cancer. Specifically, we are examining the role of patient-provider communication and shared decision-making. We investigate both the cognitive and emotional aspects of the decision about how to treat thyroid cancer.
How has stakeholder engagement helped your project so far?
Our stakeholders have been invaluable in their insight about the emotional aspects of decision-making, specifically related to the fear of cancer and how patients interact with educational information. Prior to engaging our patient and provider (surgeons, endocrinologists, and radiologist) stakeholders, we focused on the lack of informational support. We wanted to design a decision aid and thought that patients were not well informed. Our stakeholders confirmed this suspicion, but also opened our eyes to fear-based decision making, so-called “scared decision-making”. Nevertheless, our stakeholders do feel that it is important for patients to have clear information and be aware of all of their treatment options. Their major impact has been in two key areas:
1. Changing our hypothesis to include the emotional aspects of decision-making
2. Designing an informational packet to better inform thyroid cancer patients of their treatment options
What is a lesson you’ve learned from your stakeholder engagement work?
Be realistic! You need to give them power and listen to their recommendations, while also setting expectations about how their input will be incorporated into the research. You also need to understand that most stakeholders are not trained researchers. When forming the group, it is important to think carefully about diversity, representativeness, and size.
What WINRS services have you used?
- Consultation: We used WINRS’ expertise to plan effective patient stakeholder meetings. WINRS also will be conducting evaluation interviews with patient stakeholders so we can learn from their experience as stakeholders on this project.
- CARDS: We met with the CARDS® group to evaluate the informational package we are designing. CARDS input is invaluable, because they are much more diverse educationally,
Each month, WINRS interviews research teams we’ve worked with to ask about the benefits and challenges related to stakeholder engagement. If you’d like to be interviewed, please email firstname.lastname@example.org