Parkinson’s UK is the UK’s leading charity supporting people affected by Parkinson’s, a neurological condition for which there is currently no cure. The charity’s mission is to find a cure and improve life for everyone affected by Parkinson’s through cutting edge research, information, support and campaigning. By bringing together patients, their families, researchers and healthcare providers, Parkinson’s UK is helping ensure clinical trials and services are patient-centred and meet the needs of those living with the condition.

The organisation has collaborated with PFMD members to develop the Patient Engagement Quality Guidance (PEQG) and is among the first to pilot it in several real-world projects. We spoke to Dr Natasha Ratcliffe, Research Involvement Manager at Parkinson’s UK, about the charity’s experiences so far and plans for the future.

Can you describe your projects in short?

We are using the guidance in three different projects, each at a different stage of development. In the first, we’re helping an industry partner to work with people affected by Parkinson’s to plan a future clinical trial. This project is already underway, so we’ve been using the PEQG retrospectively to evaluate what we’ve done and identify how we could improve for the future.

We’re also using the Guidance in an ongoing project, which will soon begin its next phase, looking at patient-centred outcome measures in Parkinson’s. We have completed Scenario Two of the PEQG, which has helped us to improve how we collaborate with people affected by Parkinson’s.

In the final project, we are working with a small pharma company and have formed an advisory group with people affected by Parkinson’s. We had some meetings of this group before the Guidance was published but are now using it to frame our future work.  

Why did your project need a tool like the PEQG?

The guidance has been really useful in helping us reflect on our practices and improve our approach. It also provides a clear benchmark for both ourselves and industry partners to work from.

In one of the projects, we’re working with a small company that has not really experienced strategic patient engagement before. The Guidance has been useful in helping them to think about it for the first time.

How are you using it?

In the second project, which is already underway, it’s a useful checkpoint to think about what we’ve done so far. This enables us to look at things that we need to be more mindful of in the next phase.

How was the guidance particularly applicable to your specific project?

It is particularly useful for planning; for framing the projects and ensuring that all involved are thinking about how we can do patient engagement in the best way. It gets everyone working along the same lines and ensures you come back to this throughout the project.

Some of our projects have a lot of stakeholders so it’s useful to have the Guidance to refer to, especially if some of the partners are new to patient engagement. However, it tends to be only the core team that fills out the Guidance – it’s quite lengthy, so not everyone would take the time to complete it.

Do you have an idea of how it would benefit the project?

The Guidance has helped us to clarify the purpose of our meetings and how we will collaborate in future. It’s very useful for planning – in one of the projects, we have used Scenario One to help us think about what we wanted to do together.

Thinking about our shared purpose is a really useful exercise. It helps our advisors – people affected by Parkinson’s – and industry partner to view patient involvement as a long-term part of the project.