Why lived experience is so important: a review of Patient and Public involvement in health research

“In the UK, there has been an increased focus on involving patients and the public in improving the way health research is conducted,” she explains. “While including people and their lived experiences has been shown to improve research outcomes, the personal experiences of those involved remain underexplored. To explore this, I did a review of the existing literature on the topic.

“I looked at 107 published articles and nine unpublished resources, most of which had been written in the UK within the last 10 years. What was interesting was that it was so much more than bettering research for those involved. People with lived experience found a renewed sense of purpose and it helped researchers to know their work was of value and aligned with real-world needs. To be effective, this requires time, effort and resources to build trusting relationships, which was often challenging due to lack of funding and tight deadlines. This review also showed how it is not often realised how taking part in research can be physically and emotionally demanding, by having to retell upsetting experiences and confront reminders of their health condition.”

When asked what changes she would recommend to how patients and the public are involved in research, Heather says: “It is important that when people with lived experience contribute to research that they, and their experiences, are not treated as data or commodities or a tick box exercise, but more attention is paid on acknowledging and appreciating their time, insights and effort. There is still a way to go for people with lived experience to be treated as equals throughout the research process, including how they are paid for their time, recognising them as co-authors and valuing their perspectives.”

‘The Importance of Lived Experience: A Scoping Review on the Value of Patient and Public Involvement in Health Research’ is published by Health Expectations.