Proving that there is always value in involving patients and the public in research, however complex and technical the topic may be, the CLAHRC’s lay document reviewers have been acknowledged in a prestigious British Medical Journal paper.
CLAHRC patient and public partners who make up our “virtual” panel of reviewers were involved in producing an academic paper published in the prestigious journal – the Standards for Reporting Implementation Studies (StaRI) statement.
In order to improve the way studies are reported in journals, researchers developed a checklist to include all the information an author needs to report in order to make sure that readers are clear on:
- how the research was done
- how the results were analysed
- what the results might mean for treating conditions or health services
Researchers at the Asthma UK Centre for Applied Research developed the STARI checklist to help researchers report implementation studies – studies that develop strategies to implement interventions that have been shown to be effective but which are not yet part of routine practice.
This was described as a “difficult” request for patient and public involvement by researchers due to the complexity of the material.
Our reviewers were asked to rate the paper under a number of headings including
- the importance of the topic
- the papers potential to impact patient care
- how easy the check-list would be for researchers to use
- how easy the paper was to read and follow
The reviewers feedback on the draft was “very helpful” and they were duly acknowledged in the final publication which we believe sets a good precedent for future PPI in writing academic papers.
Full paper details
Standards for Reporting Implementation Studies (StaRI) Statement
A project under our mental health theme focuses on improving the care of Black African and Caribbean people with memory problems, which can be an early warning sign for dementia. We know that Black African and Caribbean elders develop dementia earlier, and seek help later than their white peers.
This delay can greatly impact access to care and support, and reduce the independence of dementia patients prematurely.
We have carried out extensive engagement work within this community – running focus groups and conducting interviews to find out the perceptions and beliefs that prevent people visiting their GP when memory problems first arise.
As well as disseminating our findings we have concentrated all the learning from the project into a new leaflet “Getting help for forgetfulness“.
We co-designed this leaflet with patients and the public and it aims to encourage health-seeking behaviour among elders encountering memory problems.
It answers questions about symptoms, sets out what help is available and why you should visit your GP, and provides useful information and contacts.
We trialled the leaflet in patients without a diagnosis of dementia in several GP practices and they liked it.
We can provide printed copies to the NHS, community and voluntary groups and charities – just contact us with your needs.
Email Moïse Roche to order copies of the leaflet – firstname.lastname@example.org