This page lists resources shared by panellists and participants at #DataImpact2021 – #IdentityInData: Who counts? Visibility, voice and culture in data collection and use.
Keynote – Lemn Sissay MBE
Lemn’s book ‘My Name is Why‘ is published by Canongate.
Lemn introduced the work of GM4Women2028, a group led by Helen Pankhurst who are looking for more involvement.
Dharmi shared information about Evidence for Equality National Survey (EVENS). This survey is the largest of its kind and aims to recruit 20,000 people in total to document and understand the experiences of ethnic and religious minorities during the pandemic.
Read Dharmi’s blog post Represented yet excluded: How ethnic minority people are counted in national surveys, as well as other posts she has written for the Data Impact blog.
He added that for anyone keen to learn more about LGBTQ data and the census, his open-access article ‘Constructing a Queer Population?’ goes into more detail and cites many of the scholars and studies he discussed.
Additional resources shared by Craig:
- Disability Price Tag 2019
- Our lives, our journey longitudinal study
- iHuman Institute, University of Sheffield
- CoproNet Wales
Craig invited interested parties to contact the Scope Research Team: email@example.com
Additional resources contributed by participants
After Dharmi introduced the intersectionality of ethnicity, older age and health, this resource was offered as part of the discussion:
- the charity Independent Age did a research project in 2020 focusing on ‘subgroups’ of older people, including Black and Asian older people.
In response to discussions around the suitability of the use of the term ‘BAME’ as an umbrella term for many different ethnic groups, these resources were shared by participants:
- Writing about ethnicity (UK Government)
- Please don’t call me BAME or BME (Civil Service blog post)
- I am not your BAME person (Make It Plain)
- #BAMEOver (IncArts UK)
- ‘BAME’ term offends those it attempts to describe, sporting survey finds (The Guardian)
In response to Craig’s description of the advantages of co-production, panellist Dharmi Kapadia shared that she works with the Synergi Collaborative Centre looking at racism in mental health service and that they hired five ethnic minority co-researchers with lived experience of mental illness to collect qualitative data.
Understanding patient data have recently launched a request for proposals for a project engaging with Black & South Asian people on equitable data collection. This is a multi-stage public engagement project to learn from members of the public and healthcare professionals about the barriers to health data collection, and to co-create resources to support improvement.
Revisit #Dataimpact2021 – and continue the conversation
Read the Twitter hashtag: #DataImpact2021