Research conversation: Measuring what matters to people when deciding about future healthcare

About the event

The team behind this research conversation is developing a survey to find out what matters to older people (75+) with advanced kidney disease when considering different healthcare options. For example, retaining independence or quality of life may be more important to someone than accepting a burdensome treatment for their condition.

The survey will use a method called a discrete choice experiment (DCE), which asks people to make choices between different options and involves trade-offs between the things that matter to them. The team is already funded to undertake this survey with more than 600 older people with advanced kidney disease.

However, they’d like the survey they develop to go beyond older kidney patients. Their question is: could the same approach be used with people of different ages, with different health conditions, or with people who are currently well?

If it works, the survey could give researchers and healthcare professionals a better way of understanding what matters to people when they make decisions about their healthcare.

The team will be part-way through developing the survey for people with kidney disease when they present this work. They would like people to help them test the prototype survey and, importantly, the ideas behind it.

They will invite participants to try some of the questions and choices for themselves, discuss how they interpret them, and challenge our assumptions.

They are particularly interested in whether questions about what matters to someone with kidney disease would also make sense to someone with a different health condition, or no current health condition.

They would also like to hear what is missing, what could be improved, and how patients and members of the public could help shape the next stages of this research and any future research in other health settings.

About the speaker

Barny Hole is a kidney doctor and researcher at the University of Bristol and at Bristol hospitals, and Chief Investigator of the UNPACK study. His research explores how healthcare can balance preventing and treating disease with supporting people’s quality of life and the things that matter to them.

Miranda Scanlon has lived with kidney disease since being diagnosed with polycystic kidney disease at 18. She received a kidney transplant from her sister in 2006. She has extensive experience as a patient researcher and public contributor, including five years as Lead of the Lay Advisory Group at Kidney Research UK. She is passionate about patient autonomy, shared decision-making and ensuring that healthcare reflects what matters to the people who use it.

What is a research conversation?

Research conversations are hosted by People in Health West of England and are informal sessions which are designed to give researchers and public contributors a chance to interact. Public contributors are encouraged to ask questions, learn about, and get involved in projects in their area.