Research Network

We describe health research as the scientific study of human health with the goal of improving health and healthcare. It can also be called medical research or clinical research. 

We support many different types of health research which can be broadly grouped under the following categories.

• Clinical research: Compares therapies to determine the best treatment for a disease. Clinical trials are a type of clinical research that test new drugs, vaccines, surgical procedures, or medical devices.
• Health services research: Examines how people access healthcare, how much it costs, and how it affects patients. It also aims to improve the quality and safety of healthcare.
• Fundamental or basic science: Develops knowledge about biological factors and the underlying mechanisms that influence health and disease.
• Data science: uses statistical and scientific methods to analyse health data sets to better understand the factors the influence a person’s or population’s health, as well as how a health condition develops overtime.

If you’re interested in reading more, we’ve included some example at the end of this page.

Patient and Public Involvement (PPI) can be defined as ‘a collaborative partnership between researchers and the public to influences and shapes research.’ (National Institute of Health and Care Research).

We see PPI at the MS Society as when MS research is done ‘with’ and ‘by’ people affected by MS. People living with MS are no longer simply the subjects or participants in research where research is ‘to’ or ‘for’ them. They are now active partners, helping make decisions about which research gets funded, how it’s designed and how it’s talked about.

Our PPI programme is vital to our research strategy and our Research Network members are essential to delivering our PPI programme.

Anyone who is affected by MS can get involved and become a Research Network member. This includes people living with MS, as well as family, loved ones, and unpaid carers. You don’t need a scientific background or research experience. It’s your expertise in what it’s like to live with MS and willingness to get involved that’s the most valuable. 

We want to hear from you if you:

• live in the UK
• want to help shape our research programme
• want to learn more about MS research
• are happy to discuss your views and listen to others
• want to work with researchers and other people with MS
• will work with us to improve our Research Network.

We’d particularly like to hear from people from ethnically minoritised communities, people who identify as LGBTQ+ and young people. We know these groups are underrepresented in MS research and we want to change that. 

You can learn more about diversity in research in our 'Be visible' video. We co-produced it with Egality, other health charities and people with lived experiences. 

We’ll email you once a month with the latest PPI opportunities you could get involved in. We also host a monthly online meeting so you can ask any questions before you sign up to an activity. 

There's lots of ways to get involved. You might be doing things like:

• reviewing research funding applications
• meeting researchers to discuss their research plans
• helping researchers design their projects
• joining research panels or steering groups
• helping researchers understand what it means to live with MS
• providing feedback on documents and leaflets for people with MS
• improving the way we talk about research.

You can get involved in as much or as little as you like. Signing up to the Research Network means you’ll receive our monthly email, but you don’t have to sign up to the PPI activities. 
We'll provide some short introductory training and will support you throughout your role in any way we can.

Download our Research Network distance learning pack to better understand what it means to be a member of our Research Network. This learning pack will also form part of your introductory training.

Our steering group monitors and supports the running of the Research Network, and gives advice on its strategic direction.

The group is made up of ten Research Network members, each bringing different experiences and perspectives. We meet online every two months to discuss new ideas and plan for the future. 

Together we’re trying to create a stronger, more inclusive Research Network.

Meet some of the group:

Crystal

I was diagnosed with primary progressive MS in 2014. I'd been in a car accident in 2009 and continued to experience back pain and mobility issues. These issues led to various investigations and my MS diagnosis.

I joined the Research Network in 2022 as my children were settled in school and I had some available time! It’s been very beneficial to participate in such a knowledgeable and experienced community of people.

I've participated in a variety of activities and met lots of people. For example, I’ve been involved in reviewing funding applications and interviewing early career researchers.

The MS Society is so supportive and a positive influence!

Jeanette

I was diagnosed with relapsing remitting MS in 2014, though like many I had symptoms for some years before.

I joined the Research Network when I retired from my job as a psychologist. I wanted to contribute and maintain my interest in research. I particularly enjoy lay reviewing research applications. It’s great to be a small part of the direction of research and see what our current understanding of MS and its treatments are. You don’t need to have research expertise as these applications are written in plain English.

Having a voice and being part of the Research Network is rewarding. I would recommend being a member.

Katherine

My daughter was diagnosed with relapsing remitting MS in 2016, just after she got married. Then in 2022 her diagnosis was changed to secondary progressive MS.

I went to an MS Society event with the latest scientific information. I had so many questions, a researcher suggested that I join the Research Network.

I’ve since joined the Octopus trial’s PPI group. I find out how the trial is going, bring up any issues, and suggest improvements to the way information is communicated with people on the trial. Being a family member of a person with MS gives me a little distance, so that I can bring a different perspective to discussions.

Pat

I have primary progressive MS. I joined the Research Network after I had to take early retirement, because I felt that my brain and mind were declining. It suited me very well (and still does) because I could pace myself and work remotely.

I've had the opportunity to join the MS Society’s TERN (The Expert Review Network) which is made up of people affected by MS and MS researchers. We assess research funding applications, sit on review panels, and recommend those deserving funding. I’m enjoying the challenge!

If you’re thinking of joining the Research Network, I’d say go for it. The experience will enrich you.

Peter

In 2018, after ten months of blood tests, MRI scans, a lumbar puncture and assorted neurological assessments, I was eventually diagnosed with primary progressive MS. Whilst it was good to finally get a clear diagnosis, the idea of symptoms progressively getting worse was a concern.

When I heard about the Research Network, I wanted to not only get involved with a clinical trial, but also to explore how I might get more involved with the research programme and its future direction.

More recently, I've enjoyed getting involved with the Steering Group because all the individuals involved bring their own perspectives, insights and experiences together for the team benefit.

Pauline

I was diagnosed with relapsing remitting MS in 2015. I decided to give up a very stressful job in 2020 and dedicate my time to volunteering, including with the MS Society.

I joined the Research Network and have thoroughly enjoyed the interaction with like-minded people from across the UK. I give my perspective and feedback to researchers, helping them shape their focus. I felt I made a difference to one project at an early stage. My ask was to clearly define the “what, where, why, how”.

If you feel you want to make a difference and utilise your life skills, please give it a try. We’re a very friendly, approachable group.

Trishna

I joined the Research Network in 2013. I was diagnosed with relapsing remitting MS in 2008 and have other family members living with the condition.

I’ve particularly enjoyed being a governance board member for the MS Centres of Excellence, as it means the patient voice is being heard within some of the most cutting-edge research. The perspective I bring, especially from a diversity, equity and inclusion angle, is one that is valued and appreciated.

Joining the Research Network provides a great opportunity to learn more about how research is designed and undertaken, as well as being able to meet the researchers. I’ve learned loads and am still learning!