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An innovative research paradigm promotes social justice and long-lasting change

Inclusive approaches to health research are making a significant impact on individuals and communities. Participatory Health Research (PHR) seeks to make a change from the outset. By involving participants at every stage of the research process, from the research question and design to data generation, interpretation and dissemination, PHR produces unique insights and impacts that would not be possible through more distant approaches. 

Through various projects, funded by the National Institute for Health Research (NIHR), NHS Foundation Trusts and Clinical Commissioning Groups (CCGs), Dr Tina Cook and Dr Toby Brandon at Northumbria University are helping to shape the PHR paradigm, making important differences to people whose lives or work are central to the research  and contributing to the transformation of professional and organisational practices. Their studies largely focus on the practice of Participatory Research (PR) and the impact of PR on research into learning disability, mental health and neurological rehabilitation. 

The impact of their work is wide-ranging and demonstrates that a research process which encourages a spirit of inclusive learning helps drive change and thereby contributes to long-term empowerment and health equity. Examples of these impacts can be seen in Dr Cook and Dr Brandon’s work with NHS Foundation Trusts and CCGs, which has inspired a shift towards more participatory approaches. For instance, since their exposure to PHR, local trusts have shown a desire to bring together practitioners, services users and family carers in the research and evaluation of services. 

At the national level, Dr Brandon’s research team has advised the Scottish Office on mental health service user involvement in research. Internationally, Dr Cook is an Advisor to PartKommPlus – a German PHR consortium funded by the Federal Ministry for Education and Research to investigate factors determining successful integrated municipal strategies for health promotion across five German states. 

Another important outcome of Dr Cook and Dr Brandon’s PR approach is the ability to draw on the expertise of those affected by the research and in so doing make a difference from the inside out. Dr Cook’s research, for example, has had an effect on the way health institutions view and support people with learning disabilities. Her project funded by the Department of Health revealed that men with learning disability living in a medium secure unit were able to research and understand complex issues in relation to consent. An unexpected outcome was that their competence in this work made those around them reconsider their assessments of the capabilities of people with learning disability. 

Importantly, Dr Cook and Dr Brandon’s projects aim to give voice to those who are more usually marginalised and enable them to make positive changes for healthier lives. Dr Brandon’s work with the NIHR on care coordination and recovery for those with mental health issues, for instance, helped build confidence among mental health services users and carers and encouraged them to engage in further research. 

An additional goal for Dr Cook and Dr Brandon is the development of research practices, challenging traditional understandings of research quality and driving change at national and international levels. Their research examines ways of generating data, with Dr Cook’s work having a particular focus on articulating a broader and more inclusive approach to defining, demonstrating and evaluating impact. This is a particularly pertinent area of work as research impact becomes increasingly important to funding bodies and governments.



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