Centre for Applied Health Research

GMMSIN Interviews information

What is the purpose of this project?  

The purpose of this study is to evaluate a new online community for people recently diagnosed with Multiple Sclerosis (MS) that live in Greater Manchester, England called the Greater Manchester MS Information Network (or GMMSIN). This community has been developed by a collaboration of people living with MS, clinicians and researchers at the University of Salford.  

Why have I been invited to participate? 

You have been invited to participate in this study because you are a person living with Multiple Sclerosis (MS) in Greater Manchester, or because you are a clinician specialising in Multiple Sclerosis who works in Manchester Centre for Clinical Neurosciences, and you are taking part in the GMMSIN study. We are looking for participants in the study who would be happy to tell us about their experiences in more detail via a one-to-one interview.  

What would I have to do if I agree to participate?  

You would take part in two interviews, one when you join the project, and one up to 12 months later. This interview will be conducted either by video call using MS Teams (you do not need to have MS Teams for this, as you will be given a web link to join) or in-person at the University of Salford campus or a mutually arranged location. The interview will last for up to one hour and will be recorded for transcription purposes.  

What are the benefits to me if I participate? 

Beyond the general benefits of taking part in GMMSIN, the interviews may not have additional personal benefit to you. However, they will help to shape the future of GMMSIN and this may have value for you in letting us know the ways you would like to see GMMSIN change and grow.  

Are there any risks to me if I participate?  

There are no risks directly associated with these interviews. Your participation is voluntary and your answers will be anonymous. You can choose not to answer any questions should they make you uncomfortable, so we don’t expect the interview to be distressing. But if it is, you can stop the interview at any time. You can also find further support from the MS Society MS Helpline Freephone on +44 (0) 808 800 8000 (For people living with MS) or NHS People (for clinicians).  

Do I have to participate? 

Participation in this study is voluntary. If you decide not to take part it will not impact the care you receive for your MS or your participation in GMMSIN.  

How will my information be used?  

We will need to use information from you for this research project. This information will include your name and email address, alongside any information you choose to tell us in your interview. The University of Salford Research team will use this information to evaluate the impact of GMMSIN and to make sure that the research is being done properly. The University of Salford is the sponsor of this research and is responsible for looking after your information. We will keep all information about you safe and secure by:  

  • Storing any infomation we have about you on secure servers. 
  • Having your interview recording transcribed by an external UK company who will also protect your privacy. 
  • Making sure your answers will not be identifiable in any report or publication or be seen by anyone you work with.   
  • Your data will not be shared outside the UK. 

Once we have finished the study, we will keep some of the data so we can check the results. We will write our reports in a way that no-one can work out that you took part in the study. Your interview responses may be quoted in outputs, but these will always be anonymised, you can let us know if you prefer not to have your words quoted. We will keep your study data for a maximum of 5 years. The study data will then be fully anonymized and securely archived or destroyed. 

What are my choices about how my information is used? 

you can stop being part of the study at any time, without giving a reason.  If you change your mind about being interviewed you can withdraw, before, during or after an interview has been conducted by contacting p.a.hepburn@salford.ac.uk.  

You have the right to ask us to remove, change or delete data we hold about you for the purposes of the study. We might not always be able to do this if it means we cannot use your data to do the research. If so, we will tell you why we cannot do this. If you wish to remove your interview data after an interview, we can remove this up to 3 months after each interview before it is anonymised. 

Where can I find out more about how my information is used?  

You can find out more about how we use your information by:  

How will the project findings be published?  

A project report will be published in 2026. Publications about the project may be published in professional or peer reviewed journals.  The findings will also be communicated through social media. All publications will be written in a way that protects the identity and confidentiality of the people who participate. Anonymous data from the study may also be used for presentations and teaching purposes.  

Future research linked to GMMSIN 

We may be conducting additional research or activity in relation to the GMMSIN.  We will use the online community to provide you with further information, or if you indicate you are interested in other aspects of this research we will contact you directly for this purpose only.  Participation in the additional research will not be obligatory and your lack of participation in the additional research will not change your current experience of GMMSIN group participation or your MS care.  

What if I want to complain about how the project is being conducted?  

If you have a concern about any aspect of this study, you should ask to speak to the Principle Investigator Prof. Alison Brettle a.brettle@salford.ac.uk who will do their best to answer your questions.  

If the matter is still not resolved you can forward your concerns to Dr Graeme Sherriff, Chair of the School of Health and Society Research Ethics Approval Panel, University of Salford at g.sherriff@salford.ac.uk.  

Join the study.

Find out more about GMMSIN