Winter 2019 — patient and public involvement (PPI) newsletter
We hope you had a wonderful festive season and are as excited about this year as we are. We’ve been working with our Involvement Steering Group to plan and prioritise the focus of our PPI programme, so we’ve got a busy year ahead!
Plain Language Summaries: Co-creation workshop
In November last year, we attended a workshop in London with two patient and public involvement (PPI) volunteers. The focus of the workshop was to start to develop a toolkit for plain language summaries of research publications. Attendees included journal publishers and representatives from pharmaceutical companies.
The day started with an exploration of the need for plain language summaries of research publications:
- People are looking for information about the latest research and the development of drugs related to their condition. For example, by searching online forums for research results.
- Patient advocacy groups and charities often summarise key research findings to share with their supporters, but would not have the capacity or knowledge to provide plain language summaries of all publications.
In the afternoon, we worked in small groups to think about what plain language summaries of publications should look like, and the barriers to creating them. Everyone agreed that involving people affected by conditions, perhaps as reviewers of the summaries, would improve the readability and value of the summaries.
At Parkinson’s UK, we receive many requests from researchers looking for help to write their lay summaries for grant applications. We receive less from researchers who want to ensure they share their results in a clear and accessible way. Dissemination is an important part of the research cycle, and one where involving people can have a big impact.
Presenting at Patients as Partners 2019
This month we presented at the Patients as Partners Europe conference about one of the projects we have been collaborating on with the pharmaceutical company UCB.
One of our aims at Parkinson’s UK is to improve collaboration in Parkinson’s research. In 2017 we reached out to our Research Support Network to ask for their views on the pharmaceutical industry:
We recognised that we have an important role to play in bringing together the pharmaceutical industry and people affected by Parkinson’s to improve research. Similarly, UCB wanted to work more closely with people affected by Parkinson’s to help ensure that their research is focused on the needs of those affected by the condition.
So in 2018 we started collaborating with UCB on a number of projects. One of these involved a workshop where people affected by Parkinson’s were invited to share their views on a planned phase 2 clinical trial.
Our presentation at the conference focused on the practicalities of organising the workshop and the benefits and challenges of this kind of collaboration. It stimulated some really interesting discussions, and we hope that other patient organisations and pharmaceutical companies can learn from our experience and use it to plan successful and meaningful involvement activities.
New training for PPI contributors
The National Institute for Health Research (NIHR), along with a team of public reviewers, have developed an interactive course for patient and public involvement (PPI) contributors.
Whilst some of the content is specific to reviewing research for the NIHR, there are some modules that look at general skills and activities that may be useful for all PPI contributors.
We’d recommend having a look Module 2 (parts 3 and 4) and Module 3, which we think are the most relevant parts to compliment the Parkinson’s UK PPI training you have already completed.
The course is freely available online. Click the link below to access the training:
Assessing the benefits of new medicines
One of the other projects we are working on with UCB is focused on developing the right tools to assess outcomes in their clinical trials. Using tools that accurately capture changes and measure things that are important to people affected by Parkinson’s is a major challenge for the success of clinical trials.
3 PPI volunteers from Parkinson’s UK and 3 patient advocates from Parkinson’s Foundation (in the US) are involved in the project as patient advisers, meeting regularly over Skype with the research team to work on the project.
Claire Bale, Head of Research Communications and Engagement at Parkinson’s UK, shares more about this work in a recent blog:
Test yourself
The Involvement Steering Group suggested introducing quizzes to the newsletter to help people brush up on their involvement skills. This quiz re-visits some of the things we cover in the home-based training for PPI volunteers, so is a great reminder if it’s been a while. Take the quiz by clicking the picture below:
Your experience of being a PPI volunteer
We want to hear your thoughts on the PPI volunteer role, how we could support you better and what other opportunities and training you’d be interested in.
To help us improve our patient and public involvement programme, please complete this survey, which should take no more than 15-20 minutes:
We’d really love to hear from all of our volunteers, so please do take the time to share your views. The survey closes on Thursday 28 February 2019.
If you have any feedback on this newsletter, or suggestions for what you’d like to see in future editions, please let us know! Email us at researchinvolvement@parkinsons.org.uk.
