If we want to ensure future access to medicines, a good place to start is finding out what is important to the people who will be using those medicines. Cancer patients across the country report that poor communication is the aspect of care most in need of improvement. That means better information about diagnosis and treatment options, and better information about new medicines and the decisions about their availability.
As a society, we are increasingly empowered to take advantage of innovation to manage our own care. We can download apps, buy monitors, or wear watches that help us to look after our health. People are playing a more active role in determining their own care. This should extend to the development of new medicines and treatments.
Decisions about access to new medicines are based on whether that treatment will bring about a positive outcome. Who is better placed to determine what a positive outcome looks like than the people the treatment is intended for?
Information is key. Patients need to know when decisions will be made about access to new treatments, what new treatments have become available for them, and how to challenge decisions about access to new treatments. With that information, patients can play an important role in determining access.
Instead of leaving it to researchers, regulators, commissioners, or politicians to decide the pros and cons of a new medicine, let’s involve the patients.
Hilary Newiss is Chair of National Voices and patient champion on the Accelerated Access Review which aims to speed up access to innovative drugs, devices and diagnostics for NHS patients. This blog first appeared in the New Statesman report "Future Access to Cancer Medicines in the UK" in partnership with Merck with George Freeman MP, Hilary Newiss, Andrew Dillon, Norman Lamb MP, Lord Hunt and Richard Murray