Patient Advisory Board

To ensure that the views of people with conditions are incorporated into RADAR-CNS we have set up a Patient Advisory Board that includes people with depression, epilepsy and multiple sclerosis along with representatives from relevant support organisations. Their role as self-employed advisors is to provide feedback on the layout and content of research materials and provide expert opinions on important decisions to be made in the design of studies.

We spoke with three of the RADAR-CNS Patient & Carer Advisory Board about their experiences at our annual consortium a meeting in June 2017: 

Patrick
The longer I’ve been involved with RADAR-CNS, the more interested I’ve become

I’ve got secondary progressive multiple sclerosis (MS), which was diagnosed in 1994.  I was invited to join RADAR-CNS through the MS Society.  The project is about using mobile phones and modern technology to find out what triggers changes in people’s health. 

As I see it, technology is very much a positive force in improving people’s health, because it’s allowing real-time information to be sent to health workers, who can then discuss it with you when you see them – it’s not a case of you, the patient, having to remember what happened six months ago.  It’s all there for them to see, and I think this speeds up so many processes.  Sometimes I wonder why we haven’t had this idea before!

One of the biggest challenges facing the RADAR-CNS project will be the complexity of MS – until research has caught up with the disease, medical technology will only be able to do so much, because we don’t yet understand so much about the disease.

If I could see one change in the next five years, it would be for something to help people with primary and secondary progressive MS to be available for doctors to prescribe.

The longer I’ve been involved with RADAR-CNS, the more interested I’ve become, because I realise that’s the way the world’s going.  One’s got to keep up with it or else you’re going to get left behind!

Sarah
RADAR-CNS is all about picking up the things which we can’t always see or measure in our daily life

I’m part of the RADAR-CNS Patient and Carer Advisory Board for Epilepsy Action.

I’ve been interested in research for a long time – I’ve studied psychology, and I work in research.  My epilepsy has been quite severe over the years, but after having surgery it’s got a lot better, so I want to use my opportunities to help other people understand and improve their condition.

RADAR-CNS is all about picking up the things which we can’t always see or measure in our daily life.  My epilepsy was initially very difficult to diagnose, so having improved measurements of all the factors which might be related to epilepsy would be really, really useful. 

Epilepsy tests currently need to be done in hospital, we can’t measure things at home, and that’s something I’ve found really frustrating.  When you go into hospital and have a test when you know you’re not going to have a seizure, it can just feel a bit pointless and very frustrating, whereas all these times at home I have them, and have nothing to show.

I was initially sceptical about what we’d be contributing to RADAR-CNS, but it’s been really interesting learning about how the whole thing is put together and being asked our opinions.  For instance, we reviewed the RADAR-CNS website before it was launched, and I was able to correct some errors which had been made there about the role of medication.

The power of this type of technology is that it gives people insights into when people are doing well, and I think it’s really important that this is included in the research that’s done in this field.  Being able to record your health so you can have it registered and recognised is something I think it would be really good to have.

Spyros
Thanks to RADAR-CNS I’ve become more conscious of wearable technology

I am actively involved in several NGOs in the mental health sector and a founding member of an organization for caregivers in Greece called EPIONI.

It’s been a very interesting learning experience, to be able to speak with industry and academia from many countries.  I feel very privileged to be part of it.

I’m very positive about technology, and thanks to RADAR-CNS I’ve become more conscious of wearable technology – I use a wearable device most of the time now.  At first, I was quite cautious about wearables – I thought of them primarily a fashion item – but I now feel that they have a really helpful motivational effect. 

Being involved in RADAR-CNS project is a great way to stay in touch with the latest news about this area of research, and to meet and interact with colleagues from the field.  In the beginning, I was a bit hesitant about what this advisory board means, but I feel like we’re making a really important contribution to the project.

In my opinion, one of the most important factors in health technology is to produce apps that are supportive, user-friendly, and easy to understand, so you can understand your health in a way that’s meaningful and very easy and simple.