To people affected by Parkinson’s, working with you has a more profound impact than you know

The words ‘we listen’ can be found all around the London office of Parkinson’s UK. They feature as part of our core values, appearing in our publications and travelling with our many dedicated regional staff out into local communities. These words are important to Parkinson’s UK because they drive our focus to ensure everything we do is based on the experiences of people affected by Parkinson’s. So it’s no surprise that we think research should also listen too.

Over the last four years, our Research Support Network has grown from a few hundred people to almost 4000. And so has our determination to ensure that people affected by Parkinson’s are right at the heart of research.

Working together for a brighter future

Everyday research is taking place to improve the lives of those affected by conditions like Parkinson’s. But, traditionally, the people that will benefit from these efforts have limited involvement in this process.

This is changing though, and over the last few years there has been a shift towards meaningful collaborative working between researchers and those who they aim to benefit. This working, called Patient and Public Involvement, has been shown to improve the quality of research by increasing impact, helping with recruitment and ensuring results are shared with those who are most invested — all those who the condition affects. Despite this shift, there are still many barriers to meaningful involvement in research.

Removing barriers to better research

We wanted to do more to remove the barriers that hold back vital collaborative working between patients, carers and researchers. In 2015, our Patient and Public Involvement (PPI) programme was born.

The aim of this programme was to support people affected by Parkinson’s and researchers to work together to prioritise, design, manage and disseminate Parkinson’s research. This type of collaboration helps to ensure that research is relevant and has outcomes that benefit people affected by Parkinson’s.

The first step of the programme was to run a small pilot as, first and foremost, we wanted to ensure that what we were planning would have a positive impact on research and that the programme was feasible and worthwhile for people affected by Parkinson’s. And to ensure the results were balanced, we had the pilot externally evaluated.

Read the full or summary of the pilot on our website:

‘Unique, effective, profound…’

While the programme had a positive impact on both of the aspects we’d hoped, what we hadn’t anticipated was how much of an effect working with people affected by Parkinson’s would have on the researchers themselves.

In hindsight, this was perhaps a little naive as I have worked with people affected by Parkinson’s in all aspects of my work for the last four years and personally know how much this has positively impacted on me.

Our Research Support Network is so unique and effective because people affected by Parkinson’s work with us to run it. The research team looks the way it does largely because people affected by Parkinson’s have told us what areas they’d like us to invest in — speeding up drug development, making clinical trials faster and increasing opportunities for patients to participate in and shape research, for example — and they’ve helped us recruit the best people to develop those roles. Indeed, every aspect of our PPI programme looks the way it does because people affected by Parkinson’s make the decisions with us to shape it.

For me, working with people affected by Parkinson’s has given me purpose and drive. It has given me clarity on what matters. It has given me a confidence that feels different than confidence I would get from experience alone. It should be no surprise that researchers found these interactions quite profound too.

Through their interactions during the pilot, patients gave researchers new knowledge, understanding and insight about living with Parkinson’s. Something that many of them thought they understood, based on understanding the mechanics or biology of the condition. Researchers learned new skills in being able to communicate about their research and have spoken to us about their new-found confidence in being able to host or run a meeting with patients. And some researchers found the exchange so significant that it changed their values or attitudes towards research altogether. For one researcher the experience changed everything about the way he felt about research and how it should be done. Another said it could possibly have changed the direction of his career.

Researchers, particularly some of the more junior ones, often tell us they worry that patients may think they are not doing enough, or that they’ll find their research boring. They express such surprise at learning that patients/carers are so enthusiastic about their research. It helps motivate them and gives them confidence that their work matters. And it has changed their view on the value of working with patients.

We were so delighted with the results of our PPI pilot, we decided to work with our evaluator to publish it! Read the full paper here.

Since the programme started we have supported over 100 researchers and their teams to work with people affected by Parkinson’s. And we’ve only been able to achieve this with the help and support of over 115 incredible Patient and Public Involvement volunteers.

For further information on our PPI programme, or to get in touch about becoming a PPI volunteer, please contact us at researchinvolvement@parkinsons.org.uk