On 7 October, the funder of the RADAR-AD project – the Innovative Medicines Initiative (IMI), held a webinar about its impact on patient involvement in collaborative research projects. In the past years, IMI-funded initiatives have become evident game changers in the field of patient involvement. Chris Roberts and Jayne Goodrick, core members of the RADAR-AD Patient Advisory Board and speakers at the recent IMI webinar, gave their testimony to this development – patient representatives are taking an increasingly active role across research consortia and provide invaluable insights. Among others, patient advocates are included as members of patient advisory groups, advising on ethical issues, communication activities, clinical visits and documentation, all the while ensuring meaningful involvement of the patient perspective within the project.
Chris Roberts, member of RADAR-AD’s Patient Advisory Board
Chris is from Wales in the UK and was diagnosed with early onset mixed Dementia (vascular and Alzheimer’s) in his early 50’s. He is an Honorary Lecturer for and Honorary Fellow at Bangor University, co-founder of the 3 Nations Dementia Working Group and contributes to several different expert groups. Chris is the current Chair of Alzheimer Europe’s European Working Group of People with Dementia (EWGPWD) and is an advocate for stage appropriate dementia services as well as for the rights of people affected by dementia.
Chris shares his experience with the research in the RADAR-AD project: “When someone is given the diagnosis of dementia, it is not only them that is affected by it. If you want to hear the experience of living with the condition, ask the carers. Moreover, every person has a different experience of living with dementia.
That is why it is so important to involve a group of people like the RADAR-AD Patient Advisory Board in research projects – to share and provide invaluable insights into our various experiences and perspectives. My participation in RADAR-AD’s Patient Advisory Board so far is very positive – researchers are honest and transparent, they do not make assumptions. This is important because we need to have an open communication and continuously try to understand each other. The more researchers understand our experiences and points of view, the more they can help us. On the other side, the more we at the Patient Advisory Board understand what researchers are investigating, the more we can offer our support and make a difference. We get feedback from RADAR-AD investigators on a regular basis and it has been working very well so far. This way we are sure we are on the right track and we know our contribution is valued. Importantly, the retention in the RADAR-AD study has been higher. If study participants are treated as part of the team and if they are informed of the progress of the study, they would feel ownership and commitment. I believe the RADAR-AD Patient Advisory Board has significantly contributed to making this happen.”
Jayne Goodrick, member of RADAR-AD’s Patient Advisory Board
The word dementia did not exist in Jayne’s world until her husband (Chris Roberts), and later her mother, was diagnosed in 2012 with vascular dementia, and then Alzheimer’s. They started to research what it was, the impact it would have on both of them and their family (youngest of whom was 14), and decided that the current narrative at that time was not what they wanted. And so began their activism, to change what needed changing, to promote what was working, to inspire others into their ‘can do’ attitude, and to bring hope where previously they had found none.
When dementia is mentioned you are thrown into a pit of confusion and despair. You are hopeless. RADAR-AD’s research gave us back that hope when we thought there was none. Patient involvement motivates you as it makes it possible for you to impact the research and make a meaningful change in the lives of people living with dementia.
As Chris’ dementia has progressed Jayne and Chris are now entering a different phase of their dementia experience. In her other ‘lives’ Jayne was a front-line ambulance technician, a metaphysics consultant, and is currently concentrating on self-mastery, how to unearth and maximise any latent possibilities and potential in herself derived from the ancient Egyptian Alchemy craft of Auset (Isis). She continues running the family business of property management with help from Chris.
Jayne shares her take on the involvement of people living with Alzheimer’s in RADAR-AD: “My experience as a member of the Patient Advisory Board in RADAR-AD is one of collaboration and definitely not a ‘tick the box’ approach to patient involvement. The use of various devices in RADAR-AD to try to find markers of progression of Alzheimer’s and provide early interventions and treatment, is an important component which the Patient Advisory Board advised on. We have convinced the researchers that one size does not fit all when it comes to choosing such technologies. Moreover, the Patient Advisory Board actively reviewed the clinical protocols used in the study and made sure the information there was accessible especially to the Alzheimer’s community.”
More about the work and contributions of the RADAR-AD Patient Advisory Board can be found here.
This article was originally posted on: https://www.radar-ad.org/newsroom/radar-ad-patient-advisory-board-members-speak-about-learnings-involving-people-dementia