The Lay Researcher: A Rose by any other name? I don't think so!

WHAT’S IN A NAME?

Patient and Public Involvement (PPI) has always been an integral part of our project – I have been involved from the drafting stage onwards. From the beginning we felt that the lay people who would become involved would be more than just ‘a PPI presence’, that they would contribute to the research process itself, and form, within the Project, a third group alongside ‘Academics’ and ‘Clinicians’. Because of this they would be best described as belonging to a ‘Lay Researchers Group’ (LRG) rather than a ‘PPI group’ as it more accurately reflected their involvement in the processes of research and their individual perspectives, views and differences of opinion, as well as acknowledging their status within the project.

 

TOGETHERNESS

I saw the project drafts and revisions, particularly the PPI section, before they were sent to National Institute for Health Research,   and my comments and suggestions were incorporated. The Principal Investigator (PI) and I drew up a ‘person spec’, together with a list of anticipated tasks, for the lay researchers. Recruitment of lay researchers started at the beginning of September via Leeds Older People’s Forum and Project Management Group (PMG) members’ contacts in the Manchester area and by mid-November we had met our objective of a group of 5 lay researchers. The group presents a rich diversity across Gender, Ethnicity, Occupation and all have personal experience of falls or of caring for relatives who have had falls. It was originally intended that one of the lay researchers would be a member of the Study Steering Committee (SSC), but one of the NIHR reviewers was concerned that, because the lay researchers would be working so closely with the team (rather than just acting in an advisory capacity), they wouldn’t be adequately independent. An independent external lay person was duly appointed to the SSC. All Minutes and papers from PMG and SSC meetings are circulated to us for information with comments and suggestions fed back via me, the LRG Lead.

 

WHERE WE LEAD, YOU MIGHT FOLLOW

The main purpose of one of our online meetings was to help prioritise hypotheses about how and why falls assessment and prevention strategies may work to identify falls risk and prevent falls, derived from the literature, that would enable the study to focus on key topics. We ranked them in order of importance regarding what worked to support multifactorial falls risk assessment and prevention, based on which statements we considered would have the most impact for patients and carers.

This meeting really highlighted the thoughtfulness and wealth of relevant experience the group has to offer. Everybody featured strongly and consistently throughout.  We managed to combine a very important and serious topic with friendliness and a bit of fun, and we certainly feel that we helped to get the project off to a very good start when the SSC decided to base the project’s prioritisation of these statements around what we had said were most important for patients and carers.

MAKING A NAME FOR OURSELVES

The subject of a project acronym had been discussed by the PMG and out of a number of suggestions two had emerged as favourites. They suggested that, since clarity of communication was one of the LRG’s main areas of interest, we should have the final say, so we discussed the two acronyms on offer and chose #FRAMES which has since been adopted. FRAMES stands for Falls prevention in older adults: using Realist Approaches to improve Multifactorial assEssment and interventionS

 

HELLO WHO ARE YOU?

In order to achieve maximum visibility amongst our colleagues we each produced, a ‘mini CV/biography’  which highlighted the skills and knowledge we brought to the project, along with some insights into our home/leisure life. Our mini CVs were circulated to PMG and SSC and proved so popular that the PMG members also produced and circulated their own. Positive comments came out of both LRG and PMG meetings regarding the ‘ice-breaking’ and ‘introductory’ values of having the mini CVs ahead of the meetings.

Thank you for taking the time to read this post and we hope you have a better understanding of how we work as a lay researcher group!

 

 

 

       THE #FRAMES LAY RESEARCH GROUP MEMBERS:

• Basma Issa
• Eva Davison
• Jamil Abdulkader
• Tina Frost
• Me (Lead)
• Lynn McVey our brilliant link person

 

 

 

“I was really impressed to see that your PPI update was written by your lay leader and it was great to read their perspective of the study and to see how much PPI activity had taken place.”  NETSCC Monitoring Team, NIHR