Empowering, informing and retaining volunteer research participants: Parkinson’s UK launches an online communications toolkit for researchers and research participants

Tue, Nov 02, 2021 18:48 CET

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. The toolkit was created after a survey showed that 72% of people who have taken part in Parkinson's research didn't hear anything after contributing.

Laurel Miller, who has Parkinson’s and was a member of the steering group behind the toolkit, said: “Researchers should use this toolkit because people want to feel that their participation in research is valued, and that together we can work out how to live better lives whilst continuing the search for better treatments and a cure.”

The toolkit, which will be officially launched tomorrow (3 November), will be shared with researchers worldwide and is designed to support improved communication and feedback between researchers and participants. The launch coincides with the Health Research Authority’s Make it Public Conference which includes a panel discussion on

“The how, why and what of communicating with participants.”

Parkinson’s UK Research Participation Lead Amelia Hursey, who will be discussing the toolkit on the panel, said: “Whilst 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, 80% of people said that they would be more likely to take part in future research if they had more communication from the research team.”

The toolkit took 16 months to develop and co-produce. It was created with members of the Parkinson’s community, health care professionals and researchers to encourage ‘best practice’ in research delivery and engagement.

Parkinson’s UK’s Research Communications Officer, Dr. Katherine Fletcher said: “Participation in research, and the retention of volunteers, is essential for finding better treatments and a cure for Parkinson’s. Their contribution is invaluable to our work and we know from experience that they become as invested in the success and outcomes as the researchers. So it’s vital that they are kept informed on the progress and aren’t made to feel that they have been forgotten.”

Parkinson’s is the fastest growing neurological condition in the world, and currently there is no cure. In the UK, around 145,000 people are already living with Parkinson’s, so the need for motivated, enthusiastic and eager volunteer research participants is more important than ever.

To help address the perceived breakdown in the relationship between the researcher and participant after the research has finished, the charity has developed a communications toolkit. Working in partnership with researchers and participants from the Parkinson’s community, the toolkit is designed to be adaptable for all clinical research.

It 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.

Katherine said: “This new toolkit is relevant to all areas and aspects of health research, not just Parkinson’s. It is pioneering in making research more transparent and maintaining a sense of continuity with participants. The government's vision is for patients and clinicians to reach decisions about treatment together, with a shared understanding of the condition, the options available, and the risks and benefits of each of those. We need to place patients' and research volunteers’ needs, wishes and preferences at the heart of research decision-making.”

Amelia added: “Research is the only way to discover better treatments and a cure for the Parkinson's community. If people are feeling disenfranchised and unappreciated after taking part in a piece of research, this is a serious problem that we need to address.”

Naho Yamazaki, Head of Policy and Engagement at the Health Research Authority, said: “Informing participants of the outcome of research, during the study and at the end, is one of the key pillars of research transparency. When the HRA was developing the Make it Public strategy, many people we spoke to were really surprised to find that 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.”

Parkinson’s UK is the largest charitable funder of Parkinson’s research in Europe.

To view the Parkinson’s UK survey about research visit here: https://www.parkinsons.org.uk/sites/default/files/2019-11/Poster%20RSN%20continuous%20engagement%20%288%29.pdf?utm_source=Adestra&utm_medium=email&utm_term=&utm_content=label%3A%20poster&utm_campaign=Dec%202019%20-%20Research%20Roundup

To view the toolkit visit here: https://www.parkinsons.org.uk/sites/default/files/2021-06/Staying%20connected%20-%20toolkit.pdf

A short video, Why use the Staying Connected Toolkit, about the toolkit with interviews with research participants and researchers can be found here: https://www.youtube.com/watch?v=hWvpkpwgfjI

ENDS

Media enquiries

For more information please contact Manuela da Costa-Fernandes, Senior Media and PR Officer at Parkinson’s UK, mdacosta-fernandes@parkinsons.org.uk 0780 101 912 (Tuesday to Friday) or PR@parkinsons.org.uk

About Parkinson’s and Parkinson’s UK

Parkinson’s is what happens when the brain cells that make dopamine start to die. There are more than 40 symptoms, from tremor and pain to anxiety. Some are treatable, but the drugs can have serious side effects. It gets worse over time and there’s no cure. Yet.

Parkinson’s is the fastest growing neurological condition in the world. Around 145,000 people in the UK have Parkinson’s.

For more facts and statistics, please click here. Further information, advice and support is available on our website, www.parkinsons.org.uk.

For more information about the HRA, please visit: https://www.hra.nhs.uk/

For more information about the conference, please visit: https://www.hra.nhs.uk/about-us/news-updates/make-it-public-annual-conference/

(This is not an official HRA joint release)

Manuela da Costa‑Fernandes

Senior Media and PR Officer

Parkinson's UK

mdacosta-fernandes@parkinsons.org.uk

Parkinson’s UK, 215 Vauxhall Bridge Road, London SW1V 1EJ