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Research Ethics Committee members help develop new tool to benefit people who participate in research

Last updated on 15 Nov 2021

Parkinson’s UK has developed an interactive web-based communications toolkit to help researchers and participants keep in touch after they have taken part in a research study, with help from our Research Ethics Committee (REC) members.

The toolkit, which was launched at our Make It Public conference earlier this month, was created after a survey showed that 72 per cent of people who have taken part in Parkinson's research didn't hear anything after contributing.

It will be shared with researchers worldwide and is designed to support improved communication and feedback between researchers and participants.

Our REC members were among a diverse range of experts who helped to develop the toolkit with members of the Parkinson’s community, health care professionals and researchers. They will also now provide feedback on the toolkit and its use so a question and answer section can be created.

Parkinson’s UK Research Participation Lead Amelia Hursey, who presented the toolkit at our Make It Public conference and is running workshops with our REC members, said:

Amelia Hursey

‘While simple, this toolkit is an innovative new system to help support researchers to communicate with their participants during the research journey. It is supported by the HRA as part of the Make It Public strategy.

'In a survey we ran we ran, 80 per cent of people said they would be more likely to take part in future research if they had more communication from the research team.’

Amelia Hursey, Parkinson's UK Research Participation Lead

Naho Yamazaki, Head of Policy and Engagement at the Health Research Authority, said:

Naho Yamazaki, Head of Policy and Engagement

‘Informing participants of the outcome of research, during the study and at the end, is one of the key pillars of research transparency. When we were developing our Make it Public strategy, many people we spoke to were really surprised to find participants often do not find out what happened to the research they took part in. This needs to change. This online toolkit from Parkinson’s UK is a great resource to help researchers to keep in touch with study participants, and we are delighted to have been able to contribute to its development.’

Naho Yamazaki, Head of Policy and Engagement at the HRA

Although Parkinson’s UK led on the development of the Staying Connected Toolkit, it is designed to be used in all types of studies.

Laurel Miller, who has Parkinson’s and was a member of the steering group behind the toolkit, said:

Laurel Miller

‘Researchers should use this toolkit because people want to feel their participation in research is valued, and that together we can work out how to live better lives while continuing the search for better treatments and a cure.’

Laurel Miller, steering group member

The toolkits contains a set of easy-to-use templates and guidance to make communicating with participants as simple as possible for researchers, helping them build communication plans before recruitment begins. It aims to keep people who've taken part updated and engaged until the research findings are published.

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