For knowledge itself is power*
The MS Trust Information Service - an evaluation
Open Door - November 2006 pages 2-3
The MS Trust Information Service provides evidence-based health information in a way that is realistic and constructive to people who have multiple sclerosis, their friends and family and the nurses, therapists, doctors and other professionals who support them.
We aim to meet the individual information needs of anyone affected by MS. To achieve this we provide a personalised enquiry service to answer queries by telephone, email or letter; produce many publications; our Open Door newsletter; and web based information and interaction including chatrooms and a discussion list.
To find out how well the MS Trust Information Service is meeting this objective and highlight ways we can improve and develop, we realised a thorough evaluation was required. We commissioned a team of researchers from the University of Central England (UCE) to examine all aspects of our service, and answer our questions:
Who is using our service and whom do we fail to reach? What do people want from our service and what needs remain unmet? How do people find out about the MS Trust Information Service?
Method
All the aspects of the Information Service were examined. 1,000 questionnaires were sent randomly to our supporters and 500 to people who read Open Door, our website hosted a survey, and everyone who contacted our personal enquiry service over a period of two months was asked if they would be willing to answer questions. Survey responses were followed up by telephone interviews and four focus groups were held around the country.
Findings
Overall the research found that the Information Services of the MS Trust are highly valued. However, not all our services are recognised and we are failing to make ourselves known to everyone with MS.
"I was impressed with them and I think they need to let other people know that they are around."
"If you know where to go for information, that's half the battle."
People use our information in a variety of ways. Some use it to help them communicate more effectively with health professionals, others more directly to improve day to day life such as doing exercises or helping with decisions about possible treatment options.
However, it was highlighted that friends and family members did not feel there was any information specifically for them. A parent whose adult child had just been diagnosed with MS said, "I wanted to know what we might expect so we could be ready for anything that might happen, but nobody could tell me."
Many people said that they share the information they receive and that print was the most favoured format.
We found also that family members and younger men are more likely to use the website, whilst people who read Open Door reported lower levels of access to the online information available from the MS Trust. We are currently looking into ways that will best make our information available to all users.
What next?
Thank you to everyone who took part in this research, either by answering a questionnaire, a telephone interview or participating in a focus group. It is vital that we hear your views so that we can improve our service. We hope it will not stop here!
Please let us know if you have a comment on any aspect of our service, would like to see a publication on a particular topic or an article in Open Door on a specific subject. Also, please let us know if you would like to be part of our readers' panel and comment on publications as they are developed.
We look forward to hearing from you.
The MS Trust Information Service would like to thank the team at UCE for their excellent work on this project.
Spreading the word - can you help us?
The work done by the team at UCE described above has brought into sharp focus the fact that people rate our publications and information service highly when they use them, but don't really know who we are!
Many of our publications are given to people by health professionals, for example. Whilst this is good, it does not necessarily keep people properly informed about the full range of titles that are available or the personalised information service provided by our Information Team.
We would like everyone diagnosed with MS to realise that the MS Trust is a national organisation working to support people with MS and that we may be able to help as and when they require support. One step towards this aspiration is for more people to receive Open Door and we hope that you can help us.
If you have found the online version of Open Door helpful or interesting, please let other people know about it. You might want to use the 'email this page to a friend' link at the top of each page to send information to other people who may be interested. If you live in the UK, you can also sign up to receive your own regular copy through the post. We are not a membership organisation and there will be no cost. Just email your postal address to the MS Trust.
Thank you for your help.
MS Trust Information Team
phone 01462 476700
email infoteam@mstrust.org.uk
* Francis Bacon, 1597
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