Autumn 2019 — patient and public involvement newsletter

In this edition we share our priorities for 2020, what people affected by Parkinson’s told us about genetic testing, an opportunity to learn more about clinical research and more!

Annie Amjad
Oct 30, 2019 · 7 min read

Steering the direction of our PPI programme

Each month we have a video-conference with our Involvement Steering Group, a team of volunteers who shape and prioritise all aspects of patient and public involvement (PPI) in research at Parkinson’s UK. The group is made up of people affected by Parkinson’s and researchers.

Once a year we meet face-to-face to discuss what our priorities should be for the following year and how we might work on these areas. For our work in 2020, the group prioritised:

  • Exploring how we can support co-production in Parkinson’s research
  • Engaging ‘hard to reach’ groups in PPI
  • Developing our PPI training for researchers

We’ll be updating you in future editions of this newsletter on these projects. If you have any ideas you’d like to share with us, please get in touch at

Involvement in lab-based research

We’ve been working on a project to test and evaluate different ways that people affected by health conditions can be involved in lab-based research projects.

By lab-based we mean research that does have people taking part. Lab-based research helps us to understand more about Parkinson’s and provides us with the fundamental knowledge needed to develop new and better treatments. There are many different kinds of lab-based research, for example research using donated brain tissue, cells and animal models.

We’re working alongside the Alzheimer’s Society and University College London Hospitals on this project, with each of us taking different approaches to support researchers and PPI contributors to work together.

We’ve supported two projects using our Research Involvement Award model, which allows us to offer hands on support and facilitation for the meetings.

Pharmaceutical researchers, PPI contributors, researchers at Sheffield University and the Parkinson’s UK Research Involvement team.

We recognise that good PPI in lab-based research often starts with sharing information about research, i.e. engagement. This gives people the necessary background knowledge so that they can contribute in a meaningful way. After this first session, the researchers were keen to understand the PPI contributors’ perspectives on which models they should use in the lab.

The researchers were planning to test the effectiveness of the drug under development in cell and mouse models. But people affected by Parkinson’s were less concerned about testing effectiveness in animal models and felt the cell models were adequate. In the scientific community, there is a feeling that testing needs to be done in lots of different models before moving into humans, but people affected by Parkinson’s didn’t see this as necessary.

The PhD students involved in the research had never met anyone living with Parkinson’s before, so as well as helping to choose the models, the PPI contributors also changed the way the researchers think about their work.

Genetic testing for people newly diagnosed with Parkinson’s

This summer we consulted with people affected by Parkinson’s about a programme being considered by Parkinson’s UK — which gives newly-diagnosed people the opportunity to have a free genetic test. This test would tell people whether or not they have specific genes associated with Parkinson’s.

Whilst most people with Parkinson’s do not have a genetic form of the condition, in the near future some clinical trials will be testing drugs for specific genetic forms of Parkinson’s. Genetic testing would help people with Parkinson’s and their health care professionals identify whether they may be able to take part in certain clinical trials. These trials will take us one step closer to personalised treatments for Parkinson’s.

Genomics Education Programme, NHS Health Education England. CC BY 2.0.

We wanted to get feedback from people affected by Parkinson’s about what they thought of the programme and to understand concerns about the idea. This feedback is vital in helping shape our work around this moving forward.

We gathered feedback from people affected by Parkinson’s via a survey and at a workshop held in London. We had an amazing response — over 700 people completed the survey, and 17 people attended the workshop.

Key takeaways from the consultation:

  • There was generally strong support for the idea — people felt it would have significant benefits for Parkinson’s research and the development of new treatments, as well as important individual benefits for the people affected by the condition.
  • There were mixed feelings about the point at which genetic testing should be offered following diagnosis — it was recognised that people often need time to get over the initial shock.
  • There was also concern about the information and support that would be available throughout the process for people with Parkinson’s, carers, partners and family members — it was felt that the current structures in place would not provide the quality of support needed.
  • The consultation emphasised the need to provide accurate information to people about what the genetic test can and cannot reveal — for example, what known gene mutations relevant for Parkinson’s will be tested.

Next steps

The consultation has provided lots of important insights for us to consider in the continued development of this project.

We are in discussions with pharmaceutical companies and other industry partners who are interested in being involved to further scope out what this programme will look like and how it will be delivered.

Training opportunity

There are two free online courses that has recently started on FutureLearn, both focused on research.

If you’re interested in learning more about how treatments are discovered, tested and evaluated, as well as some of the common challenges of clinical research, join one of the courses below:

PPI contributors shaping European project

In Parkinson’s, the mitochondria, which are the power stations of our cells, can stop working properly. One barrier to developing new drugs to target the mitochondria is an incomplete understanding of what causes the mitochondria to stop working properly, and how this contributes to the progression of the condition.

PD-MitoQUANT is a project hoping to address these issues by bringing together researchers, pharmaceutical companies and people affected by Parkinson’s.

Richard and Paula are our PPI contributors involved in the project. In November they will be attending a project meeting in Israel and giving a presentation to the researchers and project partners highlighting the importance of patient and public involvement in research.

In the latest project newsletter Richard introduces himself and shares why he was interested in the project. Read the PD-MitoQUANT newsletter here.

New guide to help charities and patients work with pharma companies

Parkinson’s UK worked alongside other charities, companies and patients to develop a guide full of practical advice on how these groups can work together to deliver the most meaningful research possible.

We’ve been supporting researchers based in universities and hospitals to work with people affected by Parkinson’s for a while now, and in the last couple of years we’ve expanded our programme to support pharmaceutical companies too. People affected by Parkinson’s told us this was important to them and that they value the opportunity to work with these companies.

For me, it is really important to know that Parkinson’s UK works closely with the pharmaceutical industry. Knowing that my voice can be heard, and listened to means that what is important to me as a person with Parkinson’s becomes important to those companies as well.

PPI volunteer

The guide brings together the experience of charities who have been working with pharma, including Parkinson’s UK. We were delighted to share our learnings in the new guide to help other organisations.

You can read the guidance here.

You said, we did

Some of our PPI contributors told us that they found it difficult to find the relevant information in our opportunity emails, and would often waste time reading through all the information only to find out they weren’t eligible.

We’ve introduced a table at the top of our emails, which hopefully includes enough information for you to decide if you want to read on!

We really value your feedback on any aspect of our PPI programme, so please do get in touch anytime! Email us at

Patient and Public Involvement at Parkinson's UK

Keep up to date with the latest information from the Parkinson's UK patient and public involvement programme, and read about how involvement is shaping Parkinson's research.

Annie Amjad

Written by

Research Involvement @ParkinsonsUK

Patient and Public Involvement at Parkinson's UK

Keep up to date with the latest information from the Parkinson's UK patient and public involvement programme, and read about how involvement is shaping Parkinson's research.

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