The History of Lived Experience Research and Patient and Public Involvement

The roots of lived experience and survivor research trace back to broader service user and survivor movements, which emerged as part of the advocacy for mental health rights and patient autonomy. The term "lived experience" typically refers to the first-hand experiences of individuals dealing with specific conditions, particularly health, distress, and trauma.

Lived experience research gained traction in the late 20th century alongside the psychiatric survivor movement and anti-psychiatry movements, which advocated for the recognition and inclusion of the voices of those who had experienced mental health services firsthand. This was in response to mistreatment and abuse that many people who experienced mental distress would face in receiving treatment. Many community-led and government-led initiatives have come from these activism roots to further embrace Lived Experience Research or Patient and Public Involvement (PPI) in research.

In the UK, one significant milestone was Consumers in NHS Research, also known as INVOLVE. This government-funded programme (one of very few worldwide) was established in 1996 to actively involve patients and the public in health and social research. It was later taken over by the National Institute of Health and Research (NIHR), which, since its establishment in 2006, has prioritised and released guidance and resources to support researchers in implementing PPI.

Groups that are led or controlled by survivors and service users have been at the forefront of amplifying the voices of individuals with lived experiences of mental health issues. These grassroots movements have championed user-led research and advocated for policy changes based on these invaluable insights. Their efforts have been instrumental in shifting the narrative from viewing these individuals as research subjects to recognising them as co-researchers and experts by experience.

One of the earlier survivor-led groups is the Survivor Researcher Network (SRN), which was born from the Strategies for Living project by the Mental Health Foundation in 1997. This initiative underscored the role of personal experiences in shaping mental health research and policy. The network serves as a platform, inviting mental health service users and survivors to participate in research, democratise knowledge production and challenge the prevailing biomedical models.

Since its emergence, lived experience research has aligned closely with activism. This is prominently seen within Mad studies, an academic field born from activism and reclamation of the term ‘Mad’. Mad studies represent a critical and transformative strand within the history of lived-experience research by centring the voices, history, and politics of those with lived experiences of mental distress and other intersecting social movements. With connections to global grassroots movements, it challenges traditional psychiatric and social paradigms and advocates for more inclusive and equitable approaches to understanding and addressing mental health.

This has been a short snippet of a very long story. These groups and movements reflect the growing recognition of the importance of incorporating the insights of those with direct experience into research and policy. They emphasise the shift from merely seeing these individuals as research subjects to recognising them as valuable co-researchers and experts by experience.

For anyone interested in learning more about other lived experience research groups and networks:

-            The Asylum Magazine, self-defined as a radical mental health magazine, first published in 1986 by professionals and ‘sufferers’, has since also complimented the anti-psychiatry movement and is rooted in activism, rebellion, and democratisation. Here is a list of resources and affiliated groups: https://asylummagazine.org/resources/

-            The Service User Research Enterprise, based at King’s College London, is a long-standing academic research group of researchers with direct lived experience of neurodiversity, trauma violence and abuse, mental distress, and (ref)using mental health services. The group partners with many other organisations, listed here: https://www.kcl.ac.uk/research/sure

References

https://survivorresearcher.net/about-us/srn-history/

https://imsj.org/what-is-mad-studies/

Russell, J., Greenhalgh, T., & Taylor, M. (2019). Patient and public involvement in NIHR research 2006–2019: policy intentions, progress and themes. National Institute for Health Research: Oxford, UK.