The Seventh Framework Programme (FP7), the European Union’s current research-funding instrument, stresses13 the importance of patient and public involvement. And the Patient Centered Outcomes Research Institute in Washington DC has allocated US$68 million to a research network predicated on the principle that “the interests of patients will be central to decision-making1”.
The opportunities for engaging patients in research are also being explored in a number of different ways by less conventional actors such as Shift MS which brings young people with multiple sclerosis together and ‘PatientsLikeMe'2 – a patient network where people connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, life sciences companies, purchasers and providers to develop more effective products, services and care.
We know that research does not currently mirror the priorities that patients think are important and that there is limited evidence that patient views are really making an impact.
But in a world in which patient value will increasingly become part of the decision-making process for spending and investment this will need to be dealt with.
The example of Survivors Teaching Students (below) demonstrates a simple way in which patients can influence the education of medical professionals.