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 a participant recruitment process. For recruitment of people affected by MS to research studies refer to our Share your study pages.

What is the Research Network?

The MS Society has its own ‘Research Network’ - over 300 people affected by MS who wish 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.

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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 send it to our Public Involvement Officer at researchnetwork@mssociety.org.uk. 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.

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How long will the application process take?

We normally 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 at minimum around 1 month from successfully registering an application form to being able to involve Research Network members in your work.

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Can I contact people affected by MS directly?

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

Please send queries about involving the Research Network directly to the Public Involvement Officer at: researchnetwork@mssociety.org.uk.

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Other resources

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.

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

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Help people with MS in the here and nowDonate today to fund research into the unpredictable symptoms of MS.

Want to know our take on the latest research announcements? Read the research blog.

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