Supporting Equity and Tackling Inequality: Promoting Inclusion in Public Partnerships
A long history of exclusion in society has left a legacy of deep-seated health inequalities. It has also led to the lack of inclusion in research and practice, which further increases health inequalities. We need to break the cycle of exclusion and inequality.
The National Institute of Health and Care Research (NIHR) has a long and proud history of encouraging public partnerships in research. But, we are conscious that we still have a long way to go if we are to ensure that the involvement of diverse patients, service users, carers and communities in research is inclusive, consistently makes a difference and avoids tokenism.
For example, a recent study in England found that geographical areas where a disease has the most impact, have the lowest numbers of people taking part in related research. This means that diseases that are more common in deprived communities are being studied in healthier populations. The mismatch between the profile of research participants and the populations that should benefit from the research means that the benefits and side-effects of treatments may not translate to real-world patients. Not only that, the changes to health and social care services, based on research recommendations, may not be appropriate for, or acceptable to, everyone.
At NIHR, we work with the public and other stakeholders to review the evidence on inclusive patient partnerships in research and develop recommendations for action. This blog describes some of the important learning from our work.
One of the public contributors we worked with, talked powerfully about her parents’ experience, and sense of exclusion.
Why were [my parents] so afraid or uninterested in health research? I now realise it was because no-one asked them about their experiences or views in the culture and language of their heritage. I have since discovered this to be true of other minority groups who, in the main, are the most disadvantaged.
Angela Ruddock – Public Contributor, Project & Research Team
For communities, the value of research comes from it helping them to have a better life. This connection is rarely seen by more marginalised communities. We need to reframe the relationship between researchers and communities to make the connection clearer. It means reaching out and understanding people in the context of their lives – whether that’s in hospital, prison or on the street. It means giving something back in return, so that our research is not experienced as extractive or exploitative.
Our review found that to address these issues, very different ways of working in research are required as well as a significant culture change. Four interrelated issues need to be addressed:
- 1. Resources – the time and money to overcome barriers to engagement and support inclusive partnerships.
- 2. Partnership skills – university staff, health professionals and engagement leads need to help research teams to engender trust and develop reciprocal relationships with communities, respecting and valuing different knowledge bases.
- 3. Wider incentives – to foster a diverse research workforce and inclusive approaches to research. Funders’ expectations of research teams, for example, and criteria for academic success and progression, need to reflect the importance of inclusive partnerships.
- 4. Personal motivation – reinforced by all the above, to engage, share power and create a meaningful partnership.
Investment shouldn’t just be tied to single research projects, but to long-term relationships. ‘Glue money’ is needed to sustain relationships between researchers and communities outside of formal research projects.
The whole system needs a change of culture. Inclusive public partnerships need to move from being a ‘tick box exercise’ to a valued agenda that is core to delivering high-quality research and impact. This will take time, resources and effort. Only then will we break the cycle of exclusion and inequality.
Disclaimer
The views expressed in this World EBHC Day Blog, as well as any errors or omissions, are the sole responsibility of the author and do not represent the views of the World EBHC Day Steering Committee, Official Partners or Sponsors; nor does it imply endorsement by the aforementioned parties.
