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Our new public involvement guidance: a patient and carer’s perspective

Last updated on 21 Jan 2019

Last month we featured Dr Marianne Coleman, a researcher who used our public involvement guidance on the Integrated Research Application System (IRAS) to help her carry out meaningful public involvement.

This month, Marianne talks to the members of the public she’s been working with, Vandra and Brian, to find out what it’s like to be involved in research.

Marianne

I met my public involvement volunteers to ask them what it was like to be involved in designing my study and to work collaboratively with me on my research ethics application. Brian has been living with dementia for several years, and Vandra, his wife, supports him day to day. The first meeting we had together was back in July, before I submitted my application for ethical review to the HRA, and we met again in November to talk about how the study was progressing. Their thoughts are recorded below.

Dr Marianne Coleman

The HRA public involvement guidance on IRAS asks applicants to explain who they are involving in their research, and why their experience is relevant to the project.

Why did you decide to get involved with this research?

vandra

We were already taking part in a study at the hospital and we were asked by the staff if we would be interested in helping with another project. We benefited from the other study we took part in and have helped them by giving feedback. We would have liked to take part in Marianne’s research but Brian wasn’t eligible, so this is a different way we could help.

Vandra

I thought this research was a good idea as I have lots of problems with my eyes and it bothers me a lot.

Brian

What changes did you suggest to the research project?

We read the information sheets for the research to make sure they made sense. Brian found them easy to follow and clear.

We gave our thoughts on some of the things Marianne had arranged to help make it easier for the research participants who would have a brain scan as part of the study. I drive Brian to all his appointments, so for me it seemed important that transport to the scan was feasible.

Vandra

Our guidance advises applicants to explain clearly how their research has changed as a result of working with patients, carers, service users or member of the public. Marianne had funding to pay research participants an honorarium for their time, but these kinds of payments cannot be made to people who lose capacity to give informed consent during the course of the research. Marianne asked Brian and Vandra for their thoughts on the best way to broach this topic to research participants.

We agreed that it was important to discuss payment right at the beginning of the study and let the person say what they wanted to happen. Perhaps they might want their partner to receive the payment instead? We also liked the suggestion of using the cash payment for something else that was needed to take part in the study, like extra travel expenses.

Vandra

Do you think it’s important for researchers to work with patients and carers when they plan health research?

Yes, because it shouldn’t just be hypothetical. Understanding people's experiences is quite important. We are happy to help, if you tell us how.

Vandra

Is there anything you’d like to say to researchers who are considering whether to involve patients and carers in planning their research?

I think it’s important to have good communication, to be able to explain things to us in a way that is easy to understand, so that we can help as best we can. Being patient is very important too, especially with people who have dementia. Marianne has been very understanding with Brian and he has enjoyed coming to these meetings and getting involved. She also let us know how our input made a difference. The committee who reviewed the study didn’t want many changes made to it because they felt all the issues were covered, so the study was able to start on time. It was nice to know that we’d helped with that, as we didn’t feel like we had done all that much!

Vandra

I thought everything was covered well. Things were as they should be. I’ve had a good experience

Brian

This is the second in a series of blogs about the new public involvement guidance. Look out for the third and final blog next month where we hear from a lay member on a Research Ethics Committee who helped to review Marianne’s study.

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