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The health data gap for Black and South Asian people: how can improvement play a role?

Natalie Creary and an expert panel explored the stark gap in patient data for Black and South Asian people - and shared recommendations that could help to drive improvements across the health and care system.

13 Dec 2022
12:30 – 13:30

Zoom (London time)

Tackling racial inequality is a priority across the health and care system. Recent research conducted by Liberating Knowledge in partnership with the Understanding Patient Data team Wellcome Trust explored the reasons that contribute to the stark gap in patient data, for Black and South Asian people and have identified a range of recommendations that could help to drive improvements across the health and care system.

Natalie Creary and a panel of experts shared Liberating Knowledge’s new research in this session and explored how people working in improvement can use the findings to begin to close the data gap.

Speakers

Emily Jesper-Mir and Rebecca Asher – Strategy and Engagement Managers within the Understanding Patient Data team. They co-lead a programme of work that aims to make the use of patient data more visible, understandable, and trustworthy for patients, the public and health professionals. Based at the Wellcome Trust, the programme seeks to bring transparency, accountability and public involvement to the way patient data is used. Find out more about their work at www.understandingpatientdata.org.uk

Daphne Amevenu: Director of Amevenu Ventures LTD and Associate of Liberating Knowledge. She brings expertise in spreading innovative approaches in health and care, establishing and delivering national health programmes, project and programme management and diversity and inclusion advisor.

Panellists

Professor Winston Morgan – a researcher in toxicology and clinical biochemistry, he teaches in Pharmacology, Biochemistry, Biochemical Science and Medical Physiology. His research interest’s bioscience and research into the outcomes for Black, Asian and racially minoritised Students and Staff in Higher Education and factors which contribute to poorer medical outcomes of individuals and groups on the basis of race and ethnicity.

Reema Patel – A thought-leader in the fields of technology, data and AI ethics, public engagement and participation, future of healthcare and diversity, equity and inclusion. She leads deliberative engagement at Ipsos where she directs the Global Science Partnership, an innovative approach to enabling engagement worldwide on climate. She also co-founded the Ada Lovelace Institute where she established its work on public engagement and participation. She led the Institute’s public attitudes work on biometrics and facial recognition, and social inequalities during the COVID19 pandemic response.

Stephen Quashie: A carer for his mother who has Dementia and currently works for an LGBTQ+ organisation supporting, Black, Asian and Ethnic Minority people over 50. He has a wealth of experience working within the charity sector, supporting organisations evidence their impact.  He has a keen interest in History and Social Anthropology and undertaking research in urban contexts.

Sabrina Phillips: The Lambeth Living Well Network Alliance Director. Sabrina is a Mental Health nurse, and worked in South London & Maudsley NHS Foundation Trust. Sabrina has a wide range of clinical experience in Acute and community  setting, including National & Specialist Children & Adolescent Mental Health. Sabrina has held Senior Operational roles overseeing a varied portfolio of Specialist Community Mental Health Teams for people with Mood and Anxiety issues, Reablement service and Specialist Psychology services such as Croydon Touchstone and IAPT. Sabrina has also held roles in Quality Improvement, leading on Trust wide programmes that aimed to improve the experience of staff and patients on wards, as well as reduce the length of time service users have to wait for a service or be on a ward. Sabrina interest in  Quality stems from her role as  Head of Nursing for Southwark and Addictions Clinical Academic Group (CAG).Sabrina is passionate about improving services for people with mental health problems through the provision of equitable high quality care delivered by a compassionate, skilled workforce working in partnership with colleagues from statutory organisations, VCSE, service users and carers and the people living in the community we serve. Sabrina is also a NHS Leadership Academy Ready Now Alumnae and 2020 Florence Nightingale ‘Emerging Leaders’ Scholar.

Chair

Natalie Creary: Founder of Liberating Knowledge and Programme Delivery Director at Black Thrive Lambeth. Through her work she commits to addressing social injustices, pushing the boundaries of what we know about the world and creating space for collaborations that create new knowledge to address social injustices. Her research explores how race, age, class, gender, and sexuality interconnect and shape the health and wellbeing experiences of Black communities. She is Co-Chair of the Healthy London Partnerships Children and Young People’s Mental Health Inequalities Group; Co-Chair of the Greater London Authority’s Building Stronger Communities Covid Recovery workstream; a member of the editorial advisory board for the Lancet Psychiatry journal; Q member and Acumen Fellow.

About the project 

Liberating Knowledge has partnered with the Understanding Patient Data team at the Wellcome Trust. The UPD team commissioned a project that was designed to investigate the inequalities in patient data for Black and South Asian communities. This project emerged following a previous piece of work led by UPD in partnership with Clearview Research, a qualitative study that explored the attitudes and aspirations Black and South Asian people had about how the NHS collects and uses their data. Their research highlighted that communities were not always fully aware of how their data is used. Other themes that emerged included concerns that sharing their data could lead to discrimination. Despite these concerns these communities remained optimistic that sharing their data could lead to improvements in services and reduce health inequalities but due to th lack of feedback loops between the NHS and communities many could not see evidence that this was taking place.

Liberating Knowledge sought to gain insight into the perspectives of healthcare workers through a series of focus groups and interviews. They went on to produce and anonymous survey which engaged over 3000 respondents which explored public opinions of people across the UK. Join our webinar on the 13th December 2022 from 12:30-13:30 to hear the highlights of the study and to participate in a discussion exploring what the findings mean for Quality Improvement.

Watch the recording

Download the slides