ms decisions
TRANSCRIPT
Amy Bowen, Director of Service Development
Agenda1. Background to MS Decisions2. How we ran the project3. How the resources work together to support your service4. How the site works5. Hot topics
Goals of treatment When to start treatment The consequences of no treatment Disability progression
6. Future development
Shared Decision MakingMS 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)
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
Survey feedbackMS Decisions review 2013
99% definitely/probably recommend site89% thought decision aid right length, 8% thought it too long16% 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
Survey feedback
Most helpful aspects of MS Decisions:81% Treatments overview65% Decision aid58% Side by side comparison of drugs
Most important criteria driving patient choice:96% Side effects87% Route of administration82% Efficacy51% Frequency of admin46% Disability progression
MS nurse survey November/December 2014103 nurses completed survey
75% Neuro confirms eligibility, gives brief overview and refers to MSSN
Survey feedback
Algorithm is no longer appropriate for making DMD choice:Agree strongly Agree Neutral Disagree Disagree strongly5% 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 DMTs69% Publication on DMDs
Survey feedbackpwMS survey November/December 2014Demographics (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
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
Project SponsorAmy Bowen
Steering Group
Project Manager Linden Muirhead
User Group Project Team
MST
Info OfficersJanice SykesDeryn Evans
Web Produ
cerLeni
Candan
External clinical advisor Pauline Shaw
External web develo
pers
Editorial Group
Manufacturers Group
Editorial GroupBelinda WellerDavid RogMatt CranerPaul MolyneuxOrla GrayNeil ScoldingOlga Ciccarelli
Anneka AppletonGail ClaytonHeidi ThompsonRuth StrossLou JarrettSam CalhounEsther Cockram
Deborah ClarkHilary BekkerElaine Cameron
User Group139 survey respondents35 reviewers
Steering GroupAlan ThompsonJeremy ChatawayBernie Porter
How we ran the project
Project Principles1. 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!)
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
Getting to the sitewww.msdecisions.org.ukwww.mstrust.org.uk/msdecisions
Editorial ProcessEdits 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
Media coverage
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)
Demographic
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.
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.
