Patients bring lived experience to healthcare education

In 2006 the Dutch burns foundation invited patients to help set their research agenda. It learnt that the group’s main concern was itching, which wasn’t a research priority at that time. Sanne Steenhuisen, programme secretary of the participation and citizen science initiative ath the Netherlands Organisation for Health Research and Development (ZonMw) said that it was such a good example to show that people with first hand experience of a medical condition ask very different questions.

In 2015 Cambridge launched a Patient Led Research Hub (PLRH). Originally, they had the idea to take on any research idea from any patient group. But that got too big too quickly. Most feasible research ideas came from the rare disease group. So PLRH decided to limit their scope to collaborations with patients suffering from such conditions.

ACCRECENT is motivating its authors to collaborate with patients to produce healthcare education which includes their experiences to make healthcare more empathic, understanding and humane.

The patients bringing lived experience to research teams | The BMJ