Twenty years ago in the UK, health and care services for people with multiple sclerosis (MS) were patchy, with patients often seeing uneven access to services and a lack of specialist care across the country.
However, the introduction of the early disease-modifying treatments dramatically changed the picture, not purely through their impact in improving patient outcomes, but through the urgency that they gave to system reform. The outcome was the Risk Sharing Scheme (RSS) – a powerful partnership between the government, the patient community, clinicians and the pharmaceutical industry. In essence, the RSS was set up to gather more evidence on the medicines’ impact. At the same time, it led to major investment in MS services.
Over seventy MS centres were set up across the UK, and the number of MS specialist nurses increased more than threefold. Beyond that, there was an increase in the coordination of care, and major growth in numbers of physiotherapists, occupational therapists, and neurologists specialising in MS.
Ultimately the combination of the new treatments and services had a positive impact on outcomes by, for example, delaying the moment when patients needed walking aids for an additional four years. The RSS also showed that diagnosing and treating earlier gave improved outcomes to people living with MS. Today people diagnosed with MS enter a completely different service to that available at the start of the millennium. They will find a multidisciplinary team with a broad range of treatment options ready to help them live with their condition.
What can we learn from this? There’s no harm in seeing the most obvious message here. It was this partnership approach that enabled reform and unleashed innovation in the service. The risk sharing made all parties more comfortable with that step into the unknown and the uncertainty it brought. Ultimately that improved the story for the patient community.
All of us engaged in any aspect of the delivery of better health and care face a version of the same problems – we are trying to deliver great services and innovation in treatments, diagnostics and pathways. However, we are doing so in the context of an over-burdened and cost-constrained healthcare system. In this setting, I believe that the answer to improving outcomes in healthcare conditions with major unmet need lies in learning the lessons of brave partnerships, meaning we can share the risk and move forward to better services and better health outcomes.
Some of the grand, strategic challenges that were once distant on the horizon are now with us. The number of people expected to develop Alzheimer’s in the UK is predicted to rise to 1.6 million people by 2040.
There are potential new therapies in development, but we know that the patient pathways are currently not set up for people to be quickly and adequately diagnosed or to be referred to services that are appropriate to manage them. For healthcare services to evolve, collaboration will be critical to ensuring the system can develop the health service infrastructure that enables the improvement in management of patients in the future.
Another of the significant questions to address is the management of rare diseases. Individually, these conditions may affect only a handful of people and, as a result, patients and their families often struggle to access the quality care they need.
However, collectively around one in 17 people are estimated to be affected by a rare disease at some point in their lives; and partnership is again crucial to the evolution of care with these conditions to ensure that no one is left behind because of where they live or the condition they have. A risk-sharing mentality is essential to ensuring small patient groups are prioritised alongside the grand population health challenges.
I believe that the UK has a fantastic chance to be a leader in connecting the science, the data and the healthcare system. With initiatives such as the UK Biobank and Our Future Health (OFH) – both incredible schemes that are utilising healthcare data with the aim of providing personalised care for patients – we need to continue to partner to shape the system capabilities that will deliver the transformational change all the way through to patient outcomes. We have to remember the lessons of the MS Risk Sharing Scheme and think beyond medicines.
We must think about how we can share the responsibility to improve outcomes between partners to enable real change. Our joint objective must be to translate the innovation of the upstream (such as Biobank and OFH) to the downstream – improving real patient outcomes through better and earlier diagnosis, connected management and a wider range of treatment options.
The opportunity is there. Let’s be bold, work as true partners and deliver for those who need it most.
Biogen has provided funding support for this activity.
Job code: Biogen – 222888
Date of Preparation: October 2023