Insights on expectations Karen Facey 2

We have recognized that patient involvement has two parts to it: There is research into patients perspectives, experiences and preferences, and then there are the ways in which we support patients to be involved in our processes. And that s why over the life- cycle of a medicines development from the research which the pharmaceutical industry does, through to regulators and the decisions which payers make. In the past few years we ve seen some really exciting examples from industry where patients are now being involved in medicines development. We re seeing that patients can influence clinical trial design and make clinical trials much more efficient. But not only that, they can tell us the outcomes that really matter so that we can demonstrate value to all stakeholders. We recognized over the last 20 years that we need to support patient involvement by undertaking research into patient perspectives and by helping patients participate in our processes, whether that s in medicines development or in the difficult decisions we make about access to treatment. Many sectors across medicines development and evaluation have recognized the value of involving patients in what they do, but it s still too limited. There are pockets of good practice, but it s not consistent. We see some of it in industry, we some of it in medicines regulation and some payers. But generally, across the world, there is not enough patient involvement in what we do. In my experience as a payer we ve seen examples where patient involvement has told us about side effects we didn t know about. We ve understood the outcomes that matter to patients, and that has helped us identify sub populations of patients that can really benefit from the treatment and demonstrate value for money.

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