Patients and healthcare conferences: what does true involvement look like?

In the past decade patient involvement has gained global prominence in health policy. The Health and Social Care Act 2012 in the United Kingdom, for example, set out duties for NHS commissioners with respect to the participation of patients and the public and also reflected themes embedded in European Union legislation and draft World Health Organization legislation. The slogan “nothing about us without us” sums this up, and involvement of patients individually and collectively has expanded.

This shift has created opportunities for us, as people with experience of long term illness, to use our experience to drive improvements in the design and delivery of healthcare. This has taken place through a range of activities, from sharing our stories with healthcare professionals to working with organisations to redesign health services and taking part in healthcare events. We have often observed, however, that although “patient and public involvement” is increasingly spoken of—and opportunities for engagement have increased—there is relatively little understanding about how …