Launch of a new toolkit for researchers

The toolkit, officially launched today, will be shared with researchers worldwide and is designed to support better communication and feedback between researchers and participants. The toolkit is designed to be adaptable for all areas and scales of 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 to build a communication plan before recruitment begins. It aims to keep people who've taken part updated and engaged until the research findings are published.
 
The toolkit was created after a survey we ran showed that 72% of people who’ve taken part in Parkinson's research didn't hear anything after contributing. It went on to show, 80% of people said that they’d be more likely to take part in future research if they received more communication from the research team. We responded to what we heard. We see this ongoing communication as vital, and we were keen to assist researchers to respond and stay connected with their participants. 
 
The toolkit took 16 months to develop and co-produce. It was created with members of the Parkinson’s community, healthcare professionals and researchers to encourage best practice in research delivery and engagement. The HRA is supporting this work as part of the Make it Public strategy. Find out more about the Make it Public strategy on the NHS Health Research Authority website. 

Amelia Hursey, Research Participation Lead, at Parkinson’s UK said: 
 
"Participation in research, and the retention of volunteers, is essential for finding better treatments and cures for health conditions. 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. 
 
"This new toolkit is relevant to all areas and aspects of health research, not just Parkinson’s. It’s pioneering in making research more transparent and maintaining a sense of continuity with participants."

Laurel Miller, who has Parkinson’s and is 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."

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."