Building a Research Community
My name is Deborah Morris. I am building a patient led Research Community to increase the numbers of people who have long term conditions who are involved in all aspects of health and social care research. I had to take ill health retirement in 2012 but felt that I still had skills that could be used and having worked in the NHS and feeling passionate about the standard of healthcare we have in the UK, I still want to support it in whatever way I can; hence the birth of the Research Community.
I have been working with the North West Coast Clinical Research Network (NWC CRN) as a Patient Representative for over 3 years. I do not doubt the commitment to patient involvement in the NWC CRN but the target driven, lean approach to business in the NHS is not always conducive to building relationships with people who use NHS services and helping to make their contribution meaningful in the process.
We know that the NWC CRN needs to increase the numbers of people engaging in research projects. I also know that many disparate Patient Groups and people with long term health conditions are frustrated because they want to be involved in research projects but are never asked. I aim to try and address this issue by building a patient led Research Community.
After nearly one year on we have a membership of over 100, made up of people with long term conditions, related charities and professional members. We meet every 2 months with the intention of supporting members to be involved all levels within the research process. Many members feel that they want to give something back to the NHS to say thank you for the treatment that they have received over the years. I have met some wonderful people in building the Research Community.
Working closely with a Community Geriatrician and Age Concern Liverpool and Sefton we are working to engage older people in the research process given that those over 80 years of age are particularly under represented. We have already supported some members to become Patient Research Ambassadors in their area of interest.
Do not feel frightened by the word “research”. You do not need to have an academic background and you certainly do not need to have gone to University. All you need is to be someone who has a long term condition. There is a genuine drive to involve patients in the research process right from the start, for example influencing what is to be researched, developing patient information leaflets and being included in the research being undertaken. The patient’s voice is getting stronger. Do dip your toe in the water and contact me for more information.
If you are interested in any aspect of being involved do make contact with me at Deborah.morris@NWC-Res.com or let Age Concern Liverpool & Sefton know by calling 01704 542 993 and they will pass on your contact details to me.