Diversity and inclusion in health services research

 

Chair: Usha Boolaky, Assistant Director of Research, the Health Foundation

Host: Charli Colegate, Research Manager, the Health Foundation

Speakers:

Oli Williams, THIS Institute Postdoctoral Research Fellow, King’s College London.

Emily Niner, Participation Manager and Kerrie Portman, Youth Patron, at Ambitious about Autism

Natalie Creary, Programme Delivery Director, Black Thrive

 

Session Summary:

Supporting diversity and inclusion (D&I) in health care is a well-documented concern across the NHS [1]. Although there have been significant steps to change culture and leadership [2] within the NHS to address issues of D&I, there remains a significant challenge in addressing similar inequalities throughout the health services research cycle – from agenda setting and the design of research programmes, through to the planning, delivery and evaluation of individual research projects and the implementation of the knowledge produced.  

This session presents a range of perspectives on the importance of improving how health services research addresses D&I. It explores the experiences of people who are often marginalised throughout the research cycle, and what we are learning about more inclusive, diverse and participatory research practice.  Consideration will be given to what it means to co-produce research and health services - including the barriers to developing more equitable approaches within prevailing institutional and disciplinary norms. Within this, it will examine the role of the funder in improving D&I and how the process of knowledge production influences the outcomes of research, policy and practice. Throughout the session we will explore how – as a community – we can address current inequities by creating, supporting and practicing a more inclusive research culture.

 

Session length: 90 minutes.

 


[1] Kline, R (2014). The “snowy white peaks” of the NHS: a survey of discrimination in governance and leadership and the potential impact on patient care in London and England. Available from Middlesex University’s Research Repository.

[2] E.g. through with introduction of a range of measures and initiatives at a national level to track and monitor progress such as the Workforce Race Equality Standard, and Disability Equality Standard and the NHS Diversity and Inclusion Council.

Add your voice to the conversation

Whilst in some areas I have better than average psychological intelligence to be seen on the 'Emotion' Section of website index www.poetryemotion.org.uk. in some areas I have minor disabilities. And when , as an experienced NHS volunteer, I've applied for NHS jobs the disabled people guaranteed an interview has just about never been born in mind with my applications, and despite suitabilities for lots of jobs I've not been offered even an interview.

Thank you to Usha and all of the presenters for this important and informative session. There's clearly much we can do to make the research process and its outputs more inclusive and equitable. I was struck by the statistic raised by Emily and Kerrie that only 27% of research funding on autism is spent on the autistic community's top 10 priorities, such as mental health. As Natalie says - we need to get beyond the assumption that just by producing the knowledge, the community is going to benefit. Many examples given here of how we can do it better.

@HelenMthiyane do stay in touch and let us know how you are making your work more equitable hello@blackthrive.org.uk

This (just published) paper came to my attention shortly after viewing this session: https://bmcmedresmethodol.biomedcentral.com/articles/10.1186/s12874-020-01045-4 Interesting to read it in the context of the "co-production" discussions in this session.

Thanks for flagging - I was particularly struck by this phrase "Previous research with South Asian communities also highlights that participants often do not read the paperwork, preferring to have it explained verbally whether they are literate or not". We often rely on printed materials to get key messages across and a lot of cultures prefer dialogue around key issues something that plays out in all aspects of the policy, research and practice cycle.

According Emily Niner "3/10 of people with autism are epilepsy" and is the leading cause of death. I understand that, about 70% of Epilepsy are parasitic infection, but my question is, will the same treatment given to patient that have epilepsy which is cause by Parasitic disease given to patient with autism epilepsy related. *Note* : My first time of coming across autism being related with Epilepsy. Thank you

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