A researcher talks to a research participant

Public involvement in research

Patient and Public Involvement (PPI) in research is when people with personal experience of health conditions work in active partnership with researchers or research funders like us.

Involvement isn’t the same as recruiting participants to your study or sharing information with people through public engagement events. Involvement is about working in partnership with people affected by MS to shape, design and oversee a project. We believe that involving people affected by MS will strengthen the quality and relevance of your research. This page provides more information about the different forms of PPI support we offer and how you can access them.

A major part of our PPI programme is our Research Network. This is a group of people affected by with MS, who’ve been trained in PPI and the research process. They might be living with MS themselves. Or have a close personal connection - like a close family member who’s been diagnosed with MS.

We can’t directly help you recruit research participants. And we can’t promote individual studies. We do encourage people affected by MS to take part in research. And you can read more about this on our ‘Be in a study’ page.

You shouldn’t contact Research Network members, MS Society members, or local groups directly for involvement in research. If you'd like to involve the Research Network, you should email our Public Involvement Manager. Due to the number of PPI support requests we receive, it may take us up to two weeks to respond.

How can we help you with involvement?

General PPI support

Patient and public involvement is an essential part of any MS research study. Regardless of the area of research, your research question or point in the research cycle. Or who funds that research. So, we’ll support you to develop PPI in any MS-focused research.

How do we usually help with PPI?

We can:

Help you recruit PPI representatives. This might be for steering committees, oversight groups or PPI forums. Or we can find you a ‘PPI buddy’.
Support you in developing research ideas, plans or applications. We can recruit people with lived experience to take part in focus groups. Or facilitate other methods for collecting lay feedback.
Help you develop PPI plans. Our Public Involvement Manager can advise you on designing and implementing a PPI plan to fit your research.
Help recruit lay members to ethics committees and governance panels. We do this for research oversight bodies and institutions who provide governance across health research. Like National Institute for Health and Care Excellence (NICE), National Institute for Health Research (NIHR), and Health Research Authority (HRA).

But there’s also more we can do. You can email [email protected] to talk about your specific PPI needs.

Am I eligible for general PPI support?

We can provide PPI support to:

individual researchers
research groups
academic institutions
government bodies
the private sector

You must be working to improve our understanding of MS. Or health outcomes and services for people affected by MS. You should include PPI from the beginning of your research, but we can support you at any stage.

How can I get general PPI support?

If you’re not sure what kind of PPI support you need, you can email [email protected] to arrange a chat with our Public Involvement Manager.

Or, if you know what you need, you can fill out our PPI support request form. You can download the form from the Sidebar. You should email your completed form to [email protected].

We send out PPI opportunities to our Research Network every month. You should send your PPI request form at least six weeks before any planned PPI activity. Otherwise we might not be able to recruit people in time.

When can I apply for general PPI support?

Whenever you’re ready! We offer this open support scheme all year round.

Lay Summary Development

If you’re applying for our funding, you need to write a clear lay summary. And outline your involvement plans for your research. Our Lay Summary Development scheme can help you. Members of our Research Network can give feedback on your lay summary and involvement plans before you submit. They’ll comment on:

how accessible your language is
how well they understand your research plans
the quality of your involvement plans
how important the topic is to people affected by MS

Am I eligible for Lay Summary Development?

Lay Summary Development is available if you’re applying to any of our research award rounds or research programme grants. You can also do Lay Summary Development if you’re applying for donated tissue from the MS Society Tissue Bank at Imperial College London.

How do I sign up for the Lay Summary Development scheme?

You’ll need to read our guidance and complete the Lay Summary Development application form. This includes:

a template to write your draft lay summary and involvement plan
the list of standard questions we ask Research Network members to answer. These make sure all feedback covers the key information you need to improve your draft
space for you to include your own questions for the Research Network

You can’t use this scheme to recruit participants for your research. And you can’t ask people if they’d like to be contacted in future about your research.

You can download the form from the Sidebar. You should email your completed form to [email protected] before the Lay Summary Development scheme closing date.

The scheme closing date will depend on which award round you’re applying to. You can find the scheme closing date for each round on our Funding page.

Your feedback will be sent around a month before the award round submission deadline. You’ll get feedback on the standard questions for Research Network members. And any questions you ask them. There may also be feedback on the wording or structure to make it easier to read.

When can I apply for support through Lay Summary Development?

Lay Summary Development opens when we open our funding rounds for applications. You can find round opening dates and deadlines on our Funding page.

Early Career Researcher PPI Partnership

Our Early Career Researcher (ECR) PPI Partnership scheme offers enhanced PPI support to help ECRs develop their PPI skills. You’ll be partnered with one person or a small group of people affected by MS from our Research Network. You’ll have a series of meetings with them to talk about your research, lay summary and involvement plans. And they’ll provide feedback and ideas that you can work on before your next meeting.

You’ll meet with your PPI partner at least twice over the course of a month before the funding submission deadline. This means you’ll develop a working relationship with your PPI partner. And receive more detailed, nuanced support.

Your PPI partner could become a PPI representative on your project. We can discuss this if your funding application is successful.

Am I eligible for the ECR PPI Partnership?

At the moment, only ECRs actively applying to our Early Career Fellowships can take part in the ECR PPI Partnership. You need to be applying for the Fellowship in the same calendar year that you take part in the scheme.

How can I sign up for the ECR PPI Partnership?

You’ll need to read our guidance and complete the ECR PPI Partnership application form. This includes:

a template to write your draft lay summary and involvement plan
the list of standard questions we ask Research Network members to answer. These make sure all feedback covers the key information you need to improve your draft
space for you to include your own questions for the Research Network

You can’t use this scheme to recruit participants for your research. And you can’t ask people if they’d like to be contacted in future about your research.

You can download the form from the Sidebar. You should email your completed form to [email protected] before the ECR PPI Partnership scheme closing date. You can find the scheme closing date on our Funding page.

You should expect to have a series of meetings between the PPI Partnership scheme closing and the Early Career Fellowships application submission deadline. The timings for these can be found in the guidance document.

When can I apply for support through the ECR PPI Partnership?

The ECR PPI Partnership opens when we open our Early Career Fellowship round for applications. You can find round opening dates and deadlines on our Funding page.

Other PPI resources

Interactive PPI training for researchers

We can also 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].

The UK Standards for Public Involvement

The UK Standards for Public Involvement are a description of what good public involvement looks like. And they encourage approaches that are key to good involvement. Like flexibility, sharing and learning, and mutual respect.