Isabelle Abbey-Vital, the Research Involvement Officer at Parkinson’s UK shares how they have developed a new resource to support researchers to involve the patient perspective in Parkinson’s research.
Over the last 10 years there has been a move from researchers doing research to or on people living with health conditions, such as Parkinson’s, to research teams working in partnership with patients and carers to help plan, design, manage, evaluate and disseminate research.
At Parkinson’s UK, we believe that involving the perspective of people affected by Parkinson’s at all stages of research produces higher quality, more relevant research, and ensures that the benefits are felt by the people who need it most.
That’s why over the past year, we have been working hard to improve the support we provide for Parkinson’s researchers to effectively work in partnership with people affected by Parkinson’s to shape their research.
As part of this project, we are today launching a 'Patient and Public Involvement: Resource for researchers'. This 'how-to' guide was developed in response to frequent feedback from the Parkinson's research community telling us they need more support to:
understand what is meant by Patient and Public Involvement (PPI) and where it can be most effective in their work
bring together information and resources that support PPI in one place
While it is a resource directed towards Parkinson's researchers, we have designed the content that makes it applicable to other types of research.
As one of the first resources of its kind we hope it will be shared with many research communities, and that other organizations will find it useful to develop of their own guidance.
The resource, which is available online and in print (on request) has been developed to cover a range of topics including:
What is Patient and Public Involvement?
Methods of involvement, in both clinical and basic research
How Parkinson's UK can support involvement in research
Case study examples
Ensuring PPI is meaningful
If you would be interested in receiving or sharing the resource, please contact firstname.lastname@example.org for more information.