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Research network

Public involvement in research

Public involvement in research is the process of actively seeking people who have experience of a condition you may be researching (e.g. people affected by MS) to inform the way you carry out your research.

We believe that involving people affected by MS will strengthen the quality and relevance of your research. This page will provide you with more information about using our Research Network to involve people with MS in your research.

Please note, this process is not for participant recruitment. Unfortunately we are not able to promote individual studies on our website. We support recruitment by directing people with MS to the UK Clinical Trials Gateway and MS Register via our be in a study page.

Find out more

What is the Research Network?

Our Research Network is made up of over 300 people affected by MS who want to get involved in research. They can be involved in research in a number of ways, including:

  • commenting on research applications prior to submission
  • offering suggestions to you on the suitability of proposed methods
  • reviewing materials such as leaflets, posters, webpages, and questionnaires prior to their use
  • sitting on a steering group to help throughout the research process.

Members of our Research Network have a great deal to offer at all stages of research. We can help you to invite members to be involved as we have a dedicated member of staff, our Public Involvement Officer, whose role is to support involvement in research.

The involvement of people affected by MS ensures that the research we fund is relevant to people affected by MS, and that researchers take into account their needs

How do I involve the Research Network in my project?

If you would like to request the involvement of Research Network members, please read our guidance document and complete the request form.

Any application you make should be directly relevant to people with MS and you should have a clear idea of how you want to involve members of our Research Network.

You must ensure that their involvement is meaningful, and that people have a genuine opportunity to contribute to your work. In addition you should be able to support our Network members throughout the duration of their involvement, for example by keeping them informed and updated of how the research is progressing, and being available to answer their questions. You should also be able to reimburse their reasonable expenses

Once you have completed the form email it to our Public Involvement Officer. We will get back to you with a response within 2 weeks. If you have any questions please email the above address or call 020 8438 0844. Please note that due to resources constraints we cannot guarantee that we can support every request.

Please ensure that you submit your request as early as possible to give us the greatest chance of being able to support your work.

How long will the application process take?

We send out monthly emails advertising involvement opportunities to the Research Network.

After your opportunity has been advertised, we try to work to a 3-week turnaround from sending out your study to letting you know how many Research Network members are interested in being involved with your work.

The process therefore takes an average of 4 – 6 weeks from successfully registering an application form to being able to involve Research Network members in your work.

Can I contact people affected by MS directly?

We request that researchers do not contact Research Network members, MS Society members, or local groups directly for involvement in research.

Please email queries about involving the Research Network directly to the Public Involvement Officer.

Other resources

We run free patient and public involvement training for researchers. The training was developed in collaboration with other medical research charities within the Charities Research Involvement Group and with people affected by MS.

This interactive workshop, which is co-delivered by members of our research team and people affected by MS, aims to:

  • raise awareness of the benefits of involvement
  • encourage researchers to think about how to involve patients and carers so that involvement can have an impact
  • help attendees to communicate well with people they involve
  • offer a chance to talk/work with people affected by MS about their research.

To express your interest in an upcoming workshop, please contact our Public Involvement Manager on [email protected].

RDS London

RDS London, Enabling Involvement Fund - a fund to facilitate the involvement of service users in research and to establish links between researchers and relevant patients, carers, users, user groups and individuals.

Visit the RDS London website

Involve

Involve - a national advisory group that supports greater public involvement in NHS, public health and social care research.

Visit the Involve website

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