It’s easy to involve people affected by Parkinson’s in your research

Whether you’re an involvement novice or expert, we can support you to work with people affected by Parkinson’s in a way that suits you and your research.

Annie Amjad
Apr 4, 2019 · 3 min read

Patient and Public Involvement (PPI) in research is working in partnership with people affected by health conditions to plan, design, implement, manage, evaluate or disseminate research.

At Parkinson’s UK, we want all researchers to involve people affected by Parkinson’s in their work as we know that it leads to higher-quality, more relevant research.

We support all Parkinson’s researchers to involve people affected by the condition in their work, regardless of who you are funded by or applying for funding from.

We have two fantastic networks of people affected by Parkinson’s that are interested in getting involved in your research. We’ll help you connect with the most appropriate group, which will depend on how many PPI contributors you’re looking for and what you’ll be asking them to do.

  • Research Support Network — a community of over 5000 people with a general interest in Parkinson’s research opportunities.
  • PPI volunteers — a group who have received training on the research cycle and are experienced at working with researchers. We send more specialised opportunities to this group.

As well as connecting you with our community, there are various ways we can support you with PPI, depending on what activities you’d like to carry out and how much experience you have. We’ve broken down our various levels of support below.

1. Basic support

This is the most basic level of support that we offer and is ideal for researchers who already know how they would like to involve people in their work. In these scenarios, our role is mainly to connect researchers to people affected by Parkinson’s.

This level of support would be ideal if you:

  • already have a plan for how you are going to involve people in your research
  • have some experience of involvement in research

For example, you may want to improve the plain English summary section of your grant application. We can send your summary to our volunteers who can feedback on the readability and suggest improvements. Or, you may be looking for people affected by Parkinson’s to attend a focus group to refine your research question. We can help you invite the most appropriate people along.

2. Intermediate support

For researchers who have some ideas about how they want to involve people in their work we can offer support to finalise plans, make suggestions for improvements and connect you to our networks.

This level of support would be ideal if you:

  • are looking for advice about the best way to involve people in your research
  • are looking to try out involvement activities you’ve not tried before

For example, you may want to invite some people affected by Parkinson’s to join a steering group to oversee your project. We can support you to do this, by helping you with role descriptions to identify volunteers, assisting with communication, meeting agendas and more.

3. Research Involvement Award

This award is ideal for researchers who are enthusiastic about involving people affected by Parkinson’s but don’t know where to start. Successful applicants receive hands-on support from the Research Involvement team to organise and carry out appropriate PPI activities to meet the specific needs of their research.

The award is perfect for those who are either:

  • inexperienced with PPI
  • doing lab-based or basic research where it may be harder to identify the role PPI contributors can play
  • wanting to carry out PPI prior to securing funding

We can help with:

  • identifying and recruiting people to involve
  • planning the appropriate method for involvement
  • facilitating and funding the first meeting with PPI contributors
  • advising on feedback and maintaining relationships

“The award was funded by Parkinson’s UK to facilitate a collaboration with people with Parkinson’s who are trained and willing to be involved in research projects. This group helped to ensure that our abstract had a clear and understandable message, and the study was relevant and planned in an appropriate and feasible manner. We plan to meet as a group every six months to help evaluate impact, monitor progress, and maximise the dissemination potential of the study.” Richard, Researcher and successful Research Involvement Award applicant

Get in touch with us at researchinvolvement@parkinsons.org.uk to discuss involving people affected by Parkinson’s in your research!

Thanks to Dr Katherine Fletcher

Annie Amjad

Written by

Research Involvement @ParkinsonsUK

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