Today (10th April 2018) WA Health has launched a new insight report on precision medicines, Hitting the target: Where now for precision medicines?

In recent years precision medicines have become increasingly common as our understanding of disease, particularly cancer, has become more advanced. For example, lung cancer, once described as a single disease, is now understood to be a number of different diseases with specific markers that can be detected by state-of-the-art diagnostics. Many of these developments are underpinned by an understanding of genetics and how to identify the susceptibility of a disease to a tailored treatment. As our knowledge of genetics grows, so too will our ability to tailor and target treatments.

This presents both opportunities and challenges for patients, the NHS and the wider health economy. With a greater understanding of the genetic causes of disease, we can ensure people receive the right treatment for them, meaning a possible greater chance of survival and better outcomes. For health systems, however, there is a real problem in assessing and reimbursing these kinds of tailored treatments as patient populations become smaller and smaller.

We are on the cusp of a potential brave new world where treatments are tailored to patients. But can the system cope with these developments? That is the question we tackle in our new insight report Hitting the target: Where now for precision medicines? which you can download here.

To launch our new report, we brought together representatives from the pharmaceutical and medtech industries, patient groups, professional bodies and academia to discuss the future of precisions medicines and how to overcome barriers to their adoption and use. We were also joined by Duncan Sim, Policy Advisor at Cancer Research UK and Prof Paula Lorgelly, Deputy Director of the Office for Health Economics who shared their initial thoughts on the issues around precision medicines.

The following themes emerged from the discussion:

A better understanding of value

Attendees discussed the need for a better understanding of value which goes beyond mere affordability and cost-effectiveness. They talked about attaching a value to ‘hope’; there are many ways of measuring hope, but the challenge will be to correlate this with clinical efficacy.

Ensuring access to diagnostics, not just medicines

As highlighted in our report, diagnostics are vital to make precision medicines a reality for all patients. However, attendees highlighted the challenges relating to diagnostics including widespread variation in access, capacity to deliver new tests and the need for the value of diagnostics to be given due prominence.

Data collection to support precision medicines

Effective monitoring and data are needed to support the diffusion of precision medicines and to understand fully their impact on patients and the wider NHS. While there are some registries and pockets of good data collection, they are often poorly resourced and lack the appropriate IT infrastructure to allow them to be plugged into decision-making structures. Political decision-makers need to be convinced of the importance of good data collection and how it interacts with patient health outcomes.

Patients at the heart of the process

Patients and carers can be effective and compelling advocates for change, both among national-decision-makers, and also among jobbing clinicians working at the coalface. They should be empowered with information and appropriate education to have these conversations with their own healthcare professional and political representatives.

Developing the political will for change

There is a widening gap between what is happening in research and academia and what politicians and decision-makers understand about precision medicines. While this research continues, it is up to campaigning organisations and industry to use communications to make the appropriate case to policy-makers, adapting their messages in step with decision-makers’ motivations and agenda.