How Jo Rodda & a London Trust (NELFT) helped pilot ‘Join dementia research’
‘Join dementia research’ is now active nationwide, connecting volunteers and research staff on dementia studies around the country!
We’ve been talking to some of the people who first trialled the service.
When a Trust is needed to trial a new research service that will be rolled out nationally, Dr. Jo Rodda knows why North-East London Foundation NHS Trust (NELFT) is more than up to the task.
“NELFT is a research-active Trust. We have a strong academic background and strong links with University College London (UCL); In the field of dementia Professor Martin Orrell works both at NELFT and UCL and is our research and development lead – and Dr. Janet Carter, another consultant old age psychiatrist, is also a Senior Lecturer at UCL. There are many other people actively involved in research who are based in NELFT.”
“I’m a Consultant Old Age Psychiatrist and I’ve been with the NELFT since 2011. I’ve been interested in research since medical student days and before becoming a Consultant I worked as a Clinical Research Fellow with UCL, actively engaged in Dementia research, designing and contributing to several different studies and publishing the work in peer reviewed journals.”
“One thing I’ve been responsible for since joining the Trust is setting up the Memory Service in Havering. I’m really interested in ways of helping people who are interested to get involved in research, so before ‘Join dementia research’ was around we started a dementia register locally.
It was essentially a register of people with dementia who were interested in research, so that at the touch of a button we could see a list of people who might be interested in a particular study – and I guess ‘Join dementia research’ is that on a massive scale.”
‘Join dementia research’ is an ambitious project, funded by the Department of Health, and delivered in partnership between the National Institute for Health Research, Alzheimer’s Research UK, Alzheimer’s Scotland and Alzheimer’s Society, with the ultimate goal of introducing even more volunteers into study research.
The service is open to applications from people living with dementia, their carers, and healthy volunteers and allows them to build an informative profile of their condition. This profile is then available to researcher staff who can match them to eligible studies. The benefit to both research and clinical staff from this vast resource is significant, as Dr. Rodda – experienced in both fields – observes.
“For researchers, one of the big stumbling blocks for research studies is actually finding participants. So often they’ll have a beautiful study design and all the facilities that they need, but the stumbling block is actually finding the people that they need to take part, even though they know that there are many who would be interested.
‘Join dementia research’ is so this is a way to make that happen.”
“Hopefully it will mean that recruitment of people into studies will happen more quickly and more effectively, because researchers will no longer need to go via lots of different hospitals and clinics to find people who are interested in taking part in their study; they will be able to contact them directly.
It will also make it easier for researchers to enroll the number of people that they need for their results to be meaningful.”
“When we give somebody a diagnosis of dementia we want to be giving them a positive message. So, yes we can tell them the diagnosis and we can tell them what it means and what medication and support is available, but we want to offer more than that.
Like many memory clinics, in Havering we have recently started post-diagnostic support groups and cognitive stimulation therapy groups.
We also ask everybody if they would like to be contacted about research studies for which they might be eligible, which I believe is one of many positive things that we can suggest to people.
Whilst it won’t immediately benefit them, it can generate benefits for generations to come and it’s a way of fighting back against the dementia, and I think a lot of people see research as exactly that – a way of fighting back against the condition.”
“I think it’s really important that we make sure that people are reassured that their information is being looked after very carefully, and that it will only be accessed by people approved to access it for the purposes of relevant research.”
“The other thing that people might worry about if they’re signed up, is if they’re going to get endless letters, emails or phone calls. Again, it’s just a question of how can we reassure people about that, so there’s a way that they can specify how they only want to be contacted about certain types of studies.
We also need to make sure that people know that they can withdraw at any point, and if anybody contacts them about a study, they don’t have to get involved if they don’t want to.”
Dr. Rodda is determined to ensure that people involved are happy with how ‘Join dementia research’ operates, and how it is beneficial – not a difficult or restrictive service to join. Dr. Rodda is optimistic about the impact ‘Join dementia research’ will have now it is rolled out nationally.
“We all envisage it growing and becoming a nationwide initiative, and becoming something that’s established as a way of recruiting people for big projects. It’s a way of helping researchers deliver more research, more effectively – and actually making research better, for everyone to benefit from.”
Jo Rodda is also the fastest woman to complete the Arch to Arc triathlon from London to Paris with a finish time of 78 hours & 39 minutes.
Have you been involved in a study on the service? What did you learn? If you are interested in telling your story, please complete the online sign up form.