Thank you for opening this message. I’m a researcher at the University of Bristol. My research looks at what is important to people when they choose whether to have medical treatments – I have put a link to my bio at the end of this post. I would value your feedback on a developing project looking at what is important to people living with cancer. This is a new research area for me. Whilst I meet many patients with cancer, most of my research has so far looked at kidney disease.

I’m not asking you to participate in the research. Rather, I’d value some help in thinking about how to sensitively approach people, and how to ensure that the research does not lead to unacceptable upset. This is especially important, as my work considers topics that can be upsetting, including survival and the burdens of treatments (these topics are discussed in the rest of this post).

Most people prefer to make decisions about the medical treatments they receive, rather than leave these decisions to a doctor. Nearly all treatments come at some ‘cost’ in the form of burdens or side effects. People may accept these negatives in exchange for benefits such as a chance of cure, slower disease progression, prevention of complications, improved symptoms, or a longer life. Others may choose not to start a particular treatment if, for them, the drawbacks do not outweigh the potential benefits.

I believe that better understanding of how people decide whether to start medical treatments will help us improve healthcare services, such as by changing the way that staff educate and support people who face these difficult decisions. I am developing research to look at how people decide whether to receive treatments that offer a potentially longer life at the cost of significant treatment risk, burden, or toxicity – including dialysis and chemotherapy. Patient collaborators helping with this project have recommended that I seek input from a broader group of people, as I develop the research.

I plan to use interviews and questionnaires with people living with cancer and their family members. Both will ask people living with cancer to discuss the survival with cancer treatments, the trade-offs they will make between treatment benefits and burdens, and to consider why some people choose not to start some treatments. I would value your help to make sure that I minimise any chance of distressing potential participants.

I’d be interested in your reflections on the following:

Do you think that this is an important research area?

Can a research question be important enough to justify that some people might be upset by being told about the study, or by taking part in it?

What might be the best way (how, when, and by whom) to tell potential participants about the study, and ask if they would like to take part?

What would be the best way to warn potential participants that the study will talk about topics like chance of cure, survival or treatment burdens, so that they can decide whether to learn more about it/take part?

What support should I have in place for participants who find taking part upsetting?

Thank you for taking the time to read this. I will monitor this post over the coming days and weeks am grateful to anyone who chooses to respond.

Warmest,

Barny

Dr Barnaby Hole

https://research-information.bris.ac.uk/en/persons/barny-d-hole