The project

MS Decision
 

Format

Web-based www.mstrust.org.uk/msdecisions

The web-based resource is complemented by a printed book with a fold out comparison grid.

https://support.mstrust.org.uk/file/DMD-Book-Final-WEB.pdf
 

Purpose

MS Decisions provides independent and evidence-based information about MS drugs.  It aims to empower and support shared decision making by helping people understand treatment options, weigh up pros and cons and take a proactive role in discussions with their health professionals.

Target audience

The target audience is people with relapsing remitting MS.

Initial surveys identified a range of scenarios/degrees of engagement/knowledge levels amongst potential users of the resource.
 

To cater for these different information needs we developed the following key components:

  • Decision aid - a tool to help people filter and select drugs using different criteria (such as how you take the drug, type of MS it's for), then compare up to three drugs with side-by-side summaries. The intention is to help people compare the DMDs in a simple, intuitive way (modelled on shopping websites).
  • Guide to decision making - helps people think through the issues that are involved in choosing one of the drugs, including their personal preferences, attitudes to risk, consequences of no treatment, benefits of early treatment and the ways that family and work commitments might affect their decision.
  • Frequently asked questions - short, straight-forward answers to the most commonly asked questions about the drugs.

These sit within the full MS Trust website so that users can easily navigate through links to pages with detailed information about the individual drugs and other pages which explain key topics.

A responsive web design was also vital to support the increasing number of users with mobile devices.   

Background to the resource

About 85% of those diagnosed with MS have relapsing remitting MS. An early treatment choice for people with this type of MS is whether to start taking one of thirteen disease modifying drugs (DMDs) approved for use in the UK.

The drugs are very different to each other, with regard to route of administration, level of efficacy, eligibility criteria, mechanism of action, side effects, monitoring, devolved NHS etc.

So, decisions around choosing one of these drugs are often complex, reflecting personal attitudes to benefits and risks and the likely impact on lifestyle.  With so many overlapping factors, we wanted to allow people to apply their own preferences, for example between high risk of mild but persistent side effects vs low risk of serious side effects.
 

How did you involve users?

In the first phase of the project we surveyed people with MS to help us draw out the key requirements and critical features of the new resource.  This fed into preliminary design ideas where different approaches were tested with the surveyed group.  Once we had agreed an overall design for the decision aid, further feedback was sought from the user group as we refined the resource through prototyping and testing.

A group of people affected by MS reviewed and gave feedback on the information content.

We recruited a separate group of users to consider the online structure of the information and the decision aid.  These users undertook task-based usability testing as well as gave feedback on their overall impression of the design and structure of the resource.

We also sought the views of MS specialist health professionals at all stages of the development.
 

Impact

About one year after launching the resource, we carried out an online user feedback survey.  From the 60 responses, we were able to identify areas for improvement, such as making the resource more visible on our website.

Top tip/learning

Think hard about future proofing and maintenance of the resource.   

This is a rapidly evolving area of treatment in MS.  Future-proofing was a top priority in the design to allow us to accommodate changes in drug availability, licensing and clinical practice.  Since we launched the resource in 2015, several new drugs have been approved and another one has been withdrawn.  The design of the decision aid has allowed us to amend content very easily without requiring specialist input.

Published by the Multiple Sclerosis Trust in November 2015

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