2. Agenda
1. Background to MS Decisions
2. How we ran the project
3. How the resources work together to support your service
4. How the site works
5. Hot topics
Goals of treatment
When to start treatment
The consequences of no treatment
Disability progression
6. Future development
4. Shared Decision Making
MS Trust core value:
To provide evidence-based information to help
people with MS make choices that are right for
them in partnership with their MS team.
Shared decision making (SDM) is the conversation
that happens between a patient and their health
professional to reach a healthcare choice together.
This conversation needs patients and professionals
to understand what is important to the other
person when choosing a treatment.
http://sdm.rightcare.nhs.uk/ (accessed 6-11-15)
5. Background to MS Decisions
• Independent site - no funding from pharmaceutical companies has been taken for its
development or maintenance
• Originally developed by a group of organisations led by the Department of Health
Medicines Partnership, with initial development funding from the Department of Health.
• Integral role of the MS service at University College London NHS Foundation Trust (UCLH)
• 2006 - ownership and management of the website became the responsibility UCLH and
UCL who fully updated the site content in 2009.
• During this time, the MS Trust supported by highlighting gaps, liaising with the
manufacturers and implementing edits recommended by the UCL editorial group.
• 2014 - MS Trust took over the responsibility for the website
• MSD now part of the MS Trust's own website.
• Funded by the MS Trust with contributions from a number of grant funders
6. Survey feedback
MS Decisions review 2013
99% definitely/probably recommend site
89% thought decision aid right length, 8% thought it too long
16% of visits in 2012 (2,005) worked through interactive decision aid.
Liked: clear plain English, unbiased, non-frightening, useful, step by
step navigation, interactive decision making tool, audio and video
elements
7. Survey feedback
Most helpful aspects of MS Decisions:
81% Treatments overview
65% Decision aid
58% Side by side comparison of
drugs
Most important criteria driving patient
choice:
96% Side effects
87% Route of administration
82% Efficacy
51% Frequency of admin
46% Disability progression
MS nurse survey November/December 2014
103 nurses completed survey
75% Neuro confirms eligibility, gives brief overview and refers to MSSN
8. Survey feedback
Algorithm is no longer appropriate for making DMD choice:
Agree strongly Agree Neutral Disagree Disagree strongly
5% 25% 40% 30% 2%
What resources would you find most helpful to support patients choices?
77% Table of drugs with short answers to FAQs (option grid)
72% Online resource that allows for tailored comparison of DMTs
69% Publication on DMDs
9. Survey feedback
pwMS survey November/December 2014
Demographics (gender, age, time since diagnosis)
Features liked:
• Clear information
• Easy to use
• Unbiased and everything in one place
• Decision aid
• Drug info side by side in a grid
• Injection videos
• Level of detail
10. Survey feedback
Features not liked:
• Out of date
• Too much info / too little info
Improve or add:
• More personal experiences –ve and
+ve
• Update with new drugs
• Update web technology
• More detail on side effects
• Information “layering” and in context
11. Project Sponsor
Amy Bowen
Project Manager
Linden Muirhead
User Group Project Team
MST
Info Officers
Janice Sykes
Deryn Evans
Web Producer
Leni Candan
External clinical
advisor
Pauline Shaw
External web
developers
Editorial Group
Manufacturers Group
Steering Group Editorial Group
Belinda Weller
David Rog
Matt Craner
Paul Molyneux
Orla Gray
Neil Scolding
Olga Ciccarelli
Anneka Appleton
Gail Clayton
Heidi Thompson
Ruth Stross
Lou Jarrett
Sam Calhoun
Esther Cockram
Deborah Clark
Hilary Bekker
Elaine Cameron
User Group
139 survey respondents
35 reviewers
Steering Group
Alan Thompson
Jeremy Chataway
Bernie Porter
How we ran
the project
12. Project Principles
1. We need to give people choice about how they want to explore their options.
2. Detailed comparison of 11 options side by side is impractical and
overwhelming.
3. Using shopping-type comparison filters to compare drugs will need to be
considered carefully to avoid over-simplification.
4. People need a coherent, joined-up suite of resources to help them through the
decision making process.
5. Not everyone who uses MS Decisions will have a shortlist of treatments.
6. PwMS do not necessarily know the level of their disease activity.
7. We need to always offer the options of treatment and no treatment, including
the implications of no treatment.
8. (MS Decisions needs to be future-proof!)
13. Who might use MSD?
You might be coming to MS Decisions because:
• you are looking for a general introduction to the range of DMDs that can be prescribed by a
neurologist for RRMS so that you can get familiar with the options for treatment.
• you have seen your neurologist or MS nurse and talked about the possibility of starting
treatment and want to know what to expect and what you need to consider
• your neurologist may have given you several specific options to consider and you want to
compare these DMDs so that you can go to your next clinic visit with your own thoughts and
questions
• you are already on a DMD and you are considering switching to another one.
Whatever your situation, MS Decisions can help you by:
• providing reliable information about DMDs for RRMS in a format that makes it easy to
compare
• exploring topics that you might want to think through when making your decision
• helping you prepare for your appointment with your neurologist or MS nurse
19. Getting to the site
www.msdecisions.org.uk
www.mstrust.org.uk/msdecisions
20. Editorial Process
Edits and updates on a quarterly basis
• user recommended changes
• new evidence on broad issues covered in guide to decision making or FAQs
• A-Z changes
Off-cycle changes for
• major changes in safety profile
• new agents
• new dosing schedules
22. Uptake
• Over 25,000 page views across MS Decisions
• 13th most visited part of the site with 1,427 users
• 38% of traffic comes via Google; 19% from Facebook
• Average of 8.5 page views per session
• Low bounce rate of 4.2% (compared with 15% across the site)
24. Feedback Fantastic..what an
amazingly useful
resource!
Excellent and from the people
who actually know what they’re
talking about. I went from no
drugs for MS and straight to
Tysabri – wasn’t too keen but info
like this would have helped a lot
at the time.
This is fantastic - it's SO important
to learn as much as possible as
quickly as possible about your
condition if you are diagnosed with
MS so that you can make the right
decision, together with your
neurologist, and move forwards.
There are so many more options
available now and more are on the
way.
25. Feedback
Sounds a good idea, but from
experience you don’t get a choice of
every drug on offer. Can depend on
area. Not sure tablet form is widely
available either.
Found this information helpful as meeting my MS
nurse next week, neurologist the week after, and
will be discussing starting a DMD
Very helpful to be able to
compare the meds.
26. Tell us what you think
Email: msdecisions@mstrust.org.uk