Data & technology: An opportunity for patients, charities and the NHS By Michelle Mitchell, Chief Executive of the MS Society Published: 26 September 2018 In recent years, the lives of people with MS have changed rapidly due to the influence of data and technology. From how people shop, to how we communicate with one another, the pace of change has been striking. However, whilst many technological developments have offered improvements to quality of life, the MS Society has found that one aspect of the lives of people with MS is still significantly behind the curve; namely their health & care. Our new report, developed in partnership with the Nuffield Trust, highlights the major opportunity to improve care through better utilisation of data & technology, and calls on partners across Government, national bodies, the third sector and the technology industry to come together to help deliver better outcomes for people with MS. What we found and the opportunities ahead Our community’s top priority is gaining access to effective treatments for their condition. As we seek to improve access to the right treatment at the right time, we found that there are currently no agreed measures for clinical outcomes for people with MS, and existing measures are inconsistently captured. This is why we’re going to bring key stakeholders together to agree outcome measures, before working to link outcomes with other datasets to deepen our insight which could in future help people with MS make more informed decisions about treatment. We also found that whilst digital tools (e.g. apps) are used in our community, the needs of people with MS need to be at the heart of the development phase of such products. This is why we will be bringing together our community to seize this challenge, through the creation of an MS Technology Forum. By inviting people with MS, healthcare professionals, and technology experts to collaborate and discuss the requirements of people with MS, we can support a longer term aim of co-producing digital tools to help people manage their condition. During our research, we also developed our understanding about how people with MS are more likely to consent to sharing their data if they understand how it is used and what the benefits of sharing data can be. In this context, we’ve made a long-term commitment to develop an information-sharing portal for people with MS who have signed up to the MS Register (currently just over 17,000 people!). The portal will enable people with MS to view their data, and could enable clinicians to view both clinical and patient reported data to improve the quality of interactions. We believe that these actions could make a significant difference to people with MS, and as a statement of our intent we have published an action plan alongside our report to underline our commitment to bring about this change. What can AMRC members do together? We hope this report will be a catalyst for more personalised and coordinated services that meet the complex needs of people living with MS. However, we recognise that colleagues across the third sector are also grappling with this agenda, and are seeking to deliver tangible benefits for their beneficiaries. We believe the third sector has a range of pivotal roles to play in shaping this change. Firstly, following the lead of AMRC in this endeavour, we must continue to make the case to Government and national bodies that data and digital transformation is a central priority for medical research charities, and not an additional “nice to have” that can be easily deprioritised in times of resource constraint. Collaborating to push the government on the delivery of the recommendations of the Watcher Review – especially around interoperability of IT systems – could be a positive first step in this direction. We should also recognise the complexity of this agenda for our sector, and be prepared to share learnings and collaborate more often. We have a common cause in this space, and the MS Society is fully committed to working with partner organisations to pursue progress for mutual benefit. For example, much of the potential we identified for use of digital tools involves improved self-management of the symptoms of MS. Yet we know that many people with MS have other conditions as well – and many of the symptoms of MS are similar to other conditions. It makes little sense to develop one tool for the management of fatigue related to MS and another, completely different one for managing fatigue related to cancer. As a sector we should be coming together to think collectively about the technology that would make a difference to our beneficiaries – and how we can work together to get the most out of every pound. Finally, we must consider how we frame this agenda in an inclusive way for our beneficiaries. There is inherent danger that data and technology could become a complex agenda that is understood by a handful of people. To build trust in these developments, charities must keep learning and act as a conduit for our beneficiaries to help to demystify the jargon. We must be clear that technology is not about replacing human contact for nurses or care workers, but about adding to it and making the most of it where appropriate. Put simply, data & technology offers a different and exciting way for people to manage their condition and a different and exciting way for the NHS to offer the best possible care for patients. That’s what we believe matters to our community and we look forward to working towards this future together.