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Professor Diana Rose, pioneer in user-led mental health research, retires

In 2014 Diana Rose became the world's first Professor in User-Led Research at the then Institute of Psychiatry (IoP) at King’s College London, now the Institute of Psychiatry, Psychology & Neuroscience (IoPPN). Over 30 years after her first ever piece of user-led research and after nearly 20 years at King’s, Professor Rose is retiring.

Diana Rose

Professor Rose is the first and only Professor in User-Led Research in the world and is Director of the IoPPN’s Service User Research Enterprise (SURE). A social scientist and mental health service user, she has pioneered user-led research, including the development of a model for peer evaluation of local services which has been used widely in the UK as well as in Norway, Sweden, Iceland and Bosnia & Herzegovina.

Professor Rose co-chaired the NICE Guideline and Quality Standard on the Service User Experience in Adult Mental Health Service. She has been Patient and Public Involvement Lead on a number of large programme grants, and is Principal Investigator for NIHR research looking at how service users and service user organisations shape mental health services in three NHS Trusts, using innovative methodologies, particularly ethnography.

My interests range from the very local to the global but focussing always on the development of new knowledges and forms of support from users/survivors and persons who have psychosocial disabilities. Although I have degrees in psychology, social psychology and cultural studies, I would not name one single discipline as my ‘home’. I am schooled in the grassroots too.– Professor Diana Rose

She emphasises that none of this work would have been possible without colleagues and friends ranging from academics to anti-austerity activists. Nor without her partner Professor Nik Rose who is ‘a source of constant intellectual provocation as well as the one who sees her through the really tough times.’

Professor Rose’s ‘first’ academic career was in sociolinguistics, social psychology, anthropology and feminist studies, as a researcher and then as a lecturer. She has used mental health services her entire adult life and the inability of both herself and her employer at the time to handle distress associated with this put an end to that part of her career in 1986. For 10 years she ‘lived in the community’ and became involved in the English user/survivor movement. In 1996 these two identities as activist and researcher came together and she developed a peer-led model of monitoring mental health services.

Professor Rose has made numerous contributions to the IoPPN and has ensured the voice of the user is active in all areas of research locally, nationally and internationally.– Professor Ian Everall, Executive Dean of the IoPPN

In 2001, she moved to the IoP and took up the role of Co-Director of the SURE with Professor Dame Til Wykes. SURE is a globally-unique group leading research into mental health services and other support from the perspective of people with mental distress and their carers.

SURE has carried out work on consumers’ perspectives on Electro-Convulsive Therapy (ECT); continuity of care; patient’s views and retrospective views of detention and compulsion; service users’ perceptions of inpatient settings and service user involvement in service development. Professor Rose has also pioneered a new method of developing outcome measures from the ground up, wholly devised by service users.

The best is when the work we do has tangible impact. We did this with our review of consumers’ perspectives on ECT which shaped national guidelines and I co-chaired the NICE Guideline and Quality Standard on the Service User Experience in Adult Mental Health Services. More locally, we have evaluated a small user-led space in Southwark and this has helped with their fundraising. I also enjoy travelling internationally to speak about user-led research and thinking in the UK.– Professor Diana Rose

In 2016 Professor Rose received a Wellcome Investigator Award for what she described as her ‘dream project’. This grant funded a pioneering three-year research programme bringing together for the first time different elements of user-led research, advocacy and activism and going beyond the predominantly English highly influential ‘patient and public involvement (PPI) in research’ model, to explore much wider approaches to knowledge generation across a range of countries. The project is at the analysis and dissemination stages and this will happen in a variety of formats and on different platforms.

So much has happened in the last ten years and this programme of work seeks to capture and conceptualise these various developments across the globe. It is a very exciting time although not always easy work to do. – Professor Diana Rose

Diana is a member of the ESRC Centre for Society & Mental Health with colleagues in King’s faculty of Social Science and Public Policy. The aim of the centre is to develop research to promote and sustain good mental health in communities from a sociological vantage point and it works in partnership with mental health service users in a range of ways.

She will be continuing at King’s for two days a week until the end of May 2021 then a day a week for another two years. Diana has a book contract with Palgrave MacMillan with the provisional title of ‘Mad Knowledges and User-Led Research’.

I will never forget my time at the IoPPN. It really was an education – of someone who was in the right place at the right time and threw herself into it heart and soul.– Professor Diana Rose

In this story

Diana Rose

Diana Rose

Professor of User-Led Research