Data is hard to come by for rare diseases – the very nature of the diseases make it more challenging to pull information together.
This is why RAIRDA is pushing for the introduction of a Rare Disease Patient Experience Survey. We are currently meeting with various clinicians and professionals – if you think this project is something you could help come to fruition, please do get in touch!
Why a patient survey?
Modelled on the Cancer Patient Experience Survey and the Cancer Quality of Life Survey, it would capture information about the diagnostic process, treatment, and patient wellbeing, creating a new source of data for organisations like us that are looking to improve the lives of people living with rare disease.
It is RAIRDA’s hope that the survey would act as a tool to monitor and improve care for patients, in addition to a method of tracking implementation of the quality standard.
What are the next steps?
The survey will require funding and NHS buy-in. It would be easier to achieve this through an endorsement of the survey as part of the Rare Diseases Framework, and its associated action plans, something we are working on as part of Genetic Alliance’s Future for Rare project.
What are the challenges?
One of the key challenges to consider in administering a potential rare disease patient experience survey will be reaching those with suspected rare disease or who are waiting for a formal diagnosis. It is important that we are able to capture their experience, but there will need to be a clear guideline as to how the group is delineated.
A rare disease patient experience survey will enable patient organisations, clinicians and policymakers to have a clearer picture of the rare disease community, the care they receive, and the areas that need improvement. It will be a vital tool for assessing implementation of the Rare Disease Quality Standard, and direct help where it is most needed.
We are currently meeting with various clinicians and professionals. Please do get in touch if you think you can help us on this project.