What research is needed?
Clinicians need guidance, and guidance should be based on evidence of what works and what fails to work.
Patients need to know the benefits, the side effects and the drawbacks of treatment so they can make informed decisions.
As things stand, there is insufficient evidence on which to base treatment guidelines. As a first stage in providing evidence based guidelines, LDA is funding a process to document the uncertainties in diagnosis and treatment of Lyme disease.
James Lind Alliance Priority Sharing Partnership – how it works
The James Lind Alliance (JLA) is principally funded by the National Institute for Health Research and provides an infrastructure for patients and clinicians to work together to identify and confront the uncertainties about the effects of treatments. LDA is now a JLA affiliate and has committed funds to a JLA Priority Setting Partnership (PSP).
How does this work? Clinicians and patients will discuss and document the uncertainties in both diagnosis and treatment that currently exist. In parallel with this an independent researcher will conduct an extensive search of the scientific literature, documenting existing evidence.
Finally the two groups, clinicians and patients, will come together to draw up a set of shared priorities. These documented priorities will then feed into the national research agenda.
The aim is to find out - What we do know and what we don’t know about diagnosis of Lyme disease and treatment of Lyme disease
Click here for further information on this JLA PSP.
Where we are now
To identify the most important research questions for diagnosis and treatment of Lyme disease, a national survey of clinicians and patients was completed at the end of 2011.
A summary report of responses is now available. The submitted uncertainties are now being sorted and the next stage will be to put them out to voting so that those who contributed, and those who didn’t, can vote on those they think are most important.