What is the iPEx programme about?

About iPExUK health policy values and promotes patient choice, self care, and patient and public involvement. These aims can not be achieved unless people can access high quality information. Until now this information has focussed on facts and figures about an illness, the risks of treatment options, and the likely outcomes. But people seek more than scientific facts. They want to know about the experience of illness – the reflections, insights and practical advice from people who have been there – and to be able to share their own experiences with others.

The team has internationally recognised expertise in making patients’ ‘experiential’ information accessible to the public; but the scientific base underpinning this activity needs strengthening. We remain unsure whether, when and how the NHS should provide information based on other patients’ experiences. How do people find and interpret online patient experiences and relate it to their own lives? What are the positive and negative consequences? How might this affect their health and well-being? How do we measure these effects? Does patient experiential information provide added value compared to facts and figures? The iPEx study is designed to answer these questions so that we can advise the NHS about how patient experiences can be presented to best effect.

iPEx briefing paper 1