“How can I reach people who don’t usually attend screening clinics?”
“What will help a patient co-investigator feel valued and part of the team?”
“Which datasets will help me identify homeless people and their use of services?”
“Who can help me make sense of the data and understand health beliefs and cultural differences in looking after young people with psychosis?”
These are just some of the questions that researchers might face when starting a project. Health research to date has not paid enough attention to diverse needs. As a research community, we have not always addressed the right questions or involved the right people in the right way. Researchers and research funders want to do this better.
This autumn the Health Foundation, The King’s Fund, the Nuffield Trust and HSR UK are collaborating to deliver a series of events on inclusion in health and care research. This should help researchers to make their projects stronger and more relevant to the world today.
Why we’re doing this
"Health and social care research also has a fundamental role to play in helping to reduce the disparities that exist in health outcomes caused by socio-economic factors, geography, age and ethnicity."
Professor Chris Whitty, Dr Louise Wood (Foreword, NIHR Best Research for Best Health: The Next Chapter)
Evidence from research can help decision makers to understand and tackle the stark health inequalities exacerbated by the pandemic, and improve health services for everyone. But to do so, the research community must be able to look inwards and ask whether our own cultures, practices and processes are as inclusive as they could be.
As Professor Stephani Hatch and Dr Karen Salt discussed at HSR UK’s conference plenary on diversity and inclusion in health and care research in July, inclusion is a practice. It’s not a box to be ticked, it’s an ongoing commitment. Research that is (more) inclusive asks questions that are important to the communities affected, centres patients and the public, and generates shared, useful knowledge. Research that is not inclusive may be inefficient, unhelpful or harmful, perpetuating health inequalities and injustice.
As organisations that (between us) fund, conduct and promote health and care research in the UK we hope that through these events we can stimulate thinking - and action- to make the improvements that are needed now.
A wide frame
It took our Steering Group* more meetings than we expected to agree a programme of events, given the complexity of the topic. We have tried to think broadly, and reflect that in the speakers and programme of each session. We draw on a range of research settings (from emergency care to mental health), methods (qualitative and quantitative) and backgrounds. This includes researchers at different stages of career, patients and public contributors and community groups, as well as research funders and commissioners. We decided to leave out some important issues, like inclusion in the research workforce, which deserve further attention in their own right.
Levels of change
As Professor Hatch highlighted at our conference we need to attend to equality, diversity and inclusion at both a systems level and a practice level.
In this series of online events, we will look at the practice (or project) level in our first session, zoom out to organisational and system levels in the second, and address funding issues in the third.
Where do we start
In our first event on 14 September we’ll look at what can be done to embed inclusion at the research project level. From defining the question to designing a study, conducting fieldwork and analysis, and disseminating findings, there are many opportunities to consider inclusion. We’ve invited six speakers who are already putting inclusion at the heart of their practice, and who bring both researcher and patient perspectives, including Ghazala Mir (Inequalities Research Network), Oli Jones (McPin Foundation) and Lynn Laidlaw (Patient Co investigator, COVID Shielding Voices). We hope that they will offer practical ideas for being more inclusive, encourage others to think about inclusion in new ways and do something differently.
“Given what we’ve been through in the past year, now more than ever, if we expect different outcomes and advancement in this area we need to be thinking differently, we need to be working differently”
Professor Stephani Hatch (HSR UK Conference plenary, 7 July 2021)
The Improving Inclusion in Health and Care Research events will take place on 14 September, 5 October and 2 November 2021. Registrations for our first workshop are now closed. For recordings and resources after the event, or to register for the second and third workshops, visit our event page.
*The Steering Group is made up of representatives from the Health Foundation, Nuffield Trust, The King’s Fund, HSR UK, and the Health Foundation’s Inclusion Panel. They are: Hardeep Aiden, Gilly Anglin-Jarrett, Rokia Ballo, Helen Buckingham, Deborah Fenney, Tara Lamont, Helen Mthiyane, Diane Redfern-Tofts, Amanda Rudczenko and Helen Snooks