The SDRC are pleased to be able to continue our Research Involvement blog series, featuring participants in research across Scotland. This blog series aims to share experiences of different perspectives of research as well as tips and lessons for researchers. Our latest blog in this series is from Eileen Penman, an EPAD participant. Read Eileen’s blog below.
Family history , a belief in research and a desire to contribute led me to sign up in 2016 as one of the first Research Participants (RP) with EPAD (European Prevention of Alzheimer’s Dementia)- the largest ever public- private partnership in Alzheimer’s disease research.
It was reassuring to have competent NHS staff do MRI scans, lumbar punctures and blood tests etc.
Cognitive tests were done by young researchers who were helpful with instructions without coaching us. One even came out into the carpark to help with opening the gate- a friendly start!
Our comfort was important to the team so tea, coffee and snack breaks were factored in though it was always better to take your own food as sandwich selection could be limited.
Travel expenses were available, map references provided and often a team member to meet and guide you through the maze of hospital corridors.
With the Professor heading EPAD acting as a facilitator, a committee of RPs was formed to discuss any difficulties experienced by participants and, in turn, how we might help the EPAD team. This was very successful as the Prof and the team always listened to us and if possible acted on our suggestions- this was crucial as was everyone’s mutual appreciation.
In addition, an Ethics committee oversaw our wellbeing by asking the participants permission to commit to another year, reminding us that we could leave the research programme at any time and choose whether to know any diagnosis of Alzheimer’s. This staged consent helped build trust with participants and protects autonomy. The Ethics committee also set out the rights and responsibilities of researchers.
Newsletters kept us up to date with developments and over time , through photos and short profiles we learned who did what in the the large international family of “Epadistas”, as our Prof. called us.
Attendance at conferences both national and international gave a few RPs the opportunity to see what an amazing enterprise the EPAD team were creating, as the Prof. said, through “clarity, consensus and community”.
One conference focused on Patient Involvement which was relevant for participants too who allow their data to be used in EPAD”s Longitudinal Cohort Study (LCS). Our feedback helps improve the experience of participants, builds engagement with the team and hopefully with retention over time in the LCS.
We also helped with querying acronyms and encouraging Plain English to be used in newsletters, posters and lectures.
Access to EPAD webinars for Academy for Early Career Researchers and others has helped us keep in touch over lockdowns . EPAD is now entering a new phase, my CT scan is done, cognitive tests will be next and I will soon take part in a virtual conference with Alzheimer Scotland.
What will the future hold? Will a new drug be found to delay or prevent Alzheimer’s? Will I be one of the right people for these trials? We might not know yet, but the more research that takes place, the closer we will get to the answers we need.
At the SDRC, we’d like to thank Elaine for writing this blog and sharing her experiences. If you are an SDRC member and would like to contribute to this series, please get in touch.