Health websites have conventionally presented information in
the style of scientific facts; however, experiences of health are increasingly
exchanged by patients and carers online. Patient experiences of health have
been incorporated into mainstream health websites and stories or testimonials
about other people’s health can currently be accessed on NHS Choices, national
and local charitable groups and private company websites. It is important to
understand what impact these health websites have on patients and carers. A research team in the University of Oxford are researching
the effects of sharing online patient information. They wish to find the best
way to incorporate people’s experiences into health websites. One component of
this research involves developing a questionnaire (The e-Health Impact
Questionnaire) which asks people about their views of online information and
the impact it may have on them. They would like your help to find out whether
the questions are easy to understand and accurately reflect the effects of
using health websites among people who have Multiple Sclerosis.
The development of the e-Health Impact Questionnaire is
being carried out in collaboration with a number of study groups in
Northumbria, Warwick, Oxford and Scotland. Together, they hope to incorporate
this questionnaire in clinical trials in the later stages of the study. It is
therefore important to establish if the questionnaire is suitable for this
purpose before the trials commence.
This research will help the Programme to make policy
recommendations about how personal experience information can best be used in
health websites to improve patient support and well-being. The Programme is
funded by the National Institute for
Can you help with
this research? The research team are asking people who have Multiple
Sclerosis, are aged 18 or over and have access to the internet to take part in
this questionnaire. You must also live in the United Kingdom.
What will taking part
in this study involve?
To take part in this study, you will need to complete an
online questionnaire. Participants are asked to complete a set of questions
asking about their general attitudes towards health-related websites. They are
then asked to browse a health website and answer a set of questions relating to
that website. Participants will be asked to repeat this task after a period of
two weeks. This will take 20-25 minutes on two separate occasions.
We are delighted to announce that we have a new Counsellor, Emma Benjamin, who will be starting at the Centre very soon.
Emma will see people by appointment here at the Centre on Tuesdays between 2pm and 7pm. She is also able to see people at her own clinic in Reading on a day or time more convenient to you if you would prefer to see her outside of the Centre.
Thank you to the BMSTC team of London Marathon runners who took part last Sunday. What an event it was and full of emotion!
We are absolutely thrilled to let you know that Tracy completed the Marathon in 5.53.46 which was an amazing achievement! Here is a message to you from her:
Thanks so much to all of you for your fantastic support,
encouragement & sponsorship of me for the London Marathon on Sunday.
I was thrilled & honoured to be running for the Centre & was determined
not to let you down on the day.
I was aiming for a time of under 6 hours
as my husband had promised me an extra £100 in sponsorship if I could do
it. So, ever the fundraiser (!), I had my eye firmly on that extra prize
& was delighted to finish in 5.53.46! It was a fabulous day, with
great support from the crowds, & my body has held up pretty well (I’m still
Thank you to everyone who came along last Friday to the the MS Information Day focussing on Fatigue. Thank you also to all of our volunteers, speakers, exhibitors and Rivermead Leisure Centre who supported the event.
We were delighted to welcome 150 guests and 20 exhibition stands. our special guest speaker, Alastair Hignell CBE, gave a truly inspiring talk and finished the day off perfectly! There will be coverage of the event in this weeks Reading Chronicle and Reading Post
Source MS Society: Have you experienced difficulties with accessing disease modifying treatments in your area? If so, and you’d be willing to speak to the media about your experience, please drop firstname.lastname@example.org a line. Thanks! For more information click here.
Tracy has gone to London today to pick up her London Marathon number for Sunday, she is so excited to be running for BMSTC! Here is a little message from her!
"Thanks to all the BMSTC members, supporters, staff & volunteers for your amazing support, sponsorship & good wishes ahead of this Sunday's London Marathon. I am ready to go & am very proud to be running for you! If you would like to sponsor me, please visit my fundraising page at http://uk.virginmoneygiving.com/TracyWatkinsVLM2013 Many thanks Tracy x :)"
Go Tracy, we're all so proud of you and know you can do it! :0)
Source MS Society: The Research Priority Setting Partnership has reached its latest stage. After inviting suggestions from everyone at the end of last year and earlier this year, the responses have been narrowed down to over 60 specific topics. What the Partnership organisers need now is everyone’s vote on which of these topics have the greatest priority for you, individually. The way to go about this is easy, click here for more!
Come and join us for an informative day discussing strategies and techniques for coping with MS and Fatigue on Friday the 19th April at Rivermead Leisure Centre in Reading.
A number of speakers will be presenting various topics throughout the day and we have 20 exhibition stands for you to browse.
We are delighted that Alastair Hignell CBE will be our special guest speaker to round off the day.
This is a FREE event for people with MS and their families, tea/coffee and lunch will be provided. For more information see our events page here. Health and Social Care professionals there is a nominal fee of £30.00.
The MS Trust is putting out a call for research proposals that will examine peoples experiences of the change to secondary progressive MS.
The research project will explore issues around the transition between relapsing remitting and secondary progressive MS from the perspective of both the person living with the condition and the specialist health professionals who work with them. Read more here.
Reforms to disability benefits will end the 'ridiculous' system that gives people lifetime awards, Iain Duncan Smith has said as the disability living allowance is replaced by the new personal independence payment (PLA). Read more here.
"Tell me about your pain..." Pain in MS (PiMS study). Research shows that many people with MS experience different kinds of pain. International researchers at King’s College London want to know more about this from your point of view.
To find out more about this study and would like to receive a participation information sheet, please contact Anthony Harrison at email@example.com or call / text leaving your name and number on 07936 448 926.