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Part of National data opt-out: equality impact assessment

Appendix 2: engagement and involvement

The organisations we worked with and the resources we used to produce this assessment. 


The organisations we worked with and the resources we used to produce this assessment. 

Organisations we engaged with

The following organisations have been engaged with through the Equality Impact Assessment, the Public Engagement Strategy and the Accessibility Workshop, and advice has been taken from NHS England’s Health Inequalities Unit and Patient & Public Voice teams:

  • Action on Hearing Loss
  • Age UK
  • Army Families Federation
  • Black and Minority Ethnic (BME) Network: NHS England
  • Carers UK
  • Clinks
  • Cobseo
  • Complex Needs Consortium
  • Crisis
  • Disability Rights UK
  • Doctors of the World
  • Equality and Diversity Forum
  • Faith Action
  • Friends, Families and Travellers
  • Genetic Alliance UK
  • GIRES (Gender Reassignment)
  • Healthwatch
  • Homeless Faculty and Inclusion Health and Pathway London
  • Homeless Link
  • Joint Council Welfare of Immigrants
  • Maternity Action
  • Maternity Voices Partnership
  • Marie Stopes UK
  • Nacro
  • National Aids Trust
  • National Association for Patient Participation
  • National Autistic Society
  • National Care Forum
  • National Children's Bureau
  • National Survivor User Network
  • NHS Gender Identity Network
  • NHS Youth Forum
  • Race Equality Foundation
  • RNIB
  • Sense
  • Shaping Our Lives
  • Stonewall
  • The National Autistic Society
  • VoiceAbility
  • Win-Win Alliance
  • Women's Health and Equality Consortium
  • Women’s Wellbeing

Further engagement and involvement

The public engagement strategy has set out how communication needs have been identified for different groups to demonstrate that reasonable steps have been taken to meet the needs of all, particularly on the issues of verification of identity and high opt-out rates within particular groups. There is still a need for a communications strategy and continued engagement work with the voluntary sector as the service becomes fully operational, so that we can continue to involve and engage the voluntary sector.

Main data sets and sources

A variety of data sets and reports have been used to produce this work. A literature search has been undertaken using a selection of search terms on ProQuest and PubMed databases, reports identified by stakeholders have been consulted as well as key statistical publications. A list of key resources is included below:

  • Age UK, 2015. Briefing: The Health and Care of Older People in England 2015.
  • Age UK, 2017. Later Life in the United Kingdom: July 2017.
  • Cabinet Office, 2017. Race Disparity Audit: Summary Findings from the Ethnicity Facts and Figures Website.
  • Carnegie UK Trust, 2016. The role of digital exclusion in social exclusion.
  • Crisis, 2016. Better than Cure? Testing the case for Enhancing Prevention of Single Homelessness in England.
  • Department for Work and Pensions, 2015. Family Resources Survey 2013 to 2014.
  • Friends, Families & Travellers, 2014. Attitudes to medical records sharing in the Gypsy and Traveller community.
  • Garrison NA, Sathe NA, Antommaria AH et al. 2016. A systematic literature review of individuals' perspectives on broad consent and data sharing in the United States, Genet Med. July; 18(7): 663–671.
  • Good Things Foundation 2016. Doing Digital Inclusion: Disability Handbook.
  • Groundswell, 2016. More than a statistic: A peer-led consultation with people experiencing homelessness for the London Homeless Health Programme.
  • Homeless Link, 2014. The Unhealthy State of Homelessness: Health audit results 2014.
  • Hussain-Gambles M, Atkin K, Leese B. 2004. Why ethnic minority groups are under-represented in clinical trials: a review of the literature. Health Soc Care Community. Sep;12(5):382-8.
  • Inclusion Health, 2014. Inclusive Practice: Vulnerable Migrants, Gypsies and Travellers, People Who Are Homeless, and Sex Workers: A Review and Synthesis of Interventions/Service Models that Improve Access to Primary Care & Reduce Risk of Avoidable Admission to Hospital.
  • Irish Traveller Movement in Britain, 2012. Roads To Success: Economic and social inclusion for Gypsies and Travellers.
  • King’s Fund, 2006. Access to health care and minority ethnic groups.
  • Knies G, Burton J, Sala E. 2012. Consenting to health record linkage: evidence from a multi-purpose longitudinal survey of a general population. BMC Health Services Research 12:52.
  • Lemos & Crane, 2015. Trends and Friends: Access, use and benefits of digital technology for homeless and ex-homeless people.
  • MacNeill V; Nwokoro C; Griffiths C et al. 2013. Recruiting ethnic minority participants to a clinical trial: a qualitative study. BMJ Open; London 3.4.
  • NAT, 2014. HIV Patient Information and NHS Confidentiality.
  • NHS England, 2016. Accessible Information Standard.
  • NHS Equality and Diversity Council, 2017. Briefing on the Information Standard for Sexual Orientation Monitoring (DCB2094).
  • Ofcom, 2015. Adults’ media use and attitudes.
  • Ofcom, 2015. The Communications Market Report 2015.
  • Office for National Statistics, 2011. Census: Detailed analysis - English language proficiency in England and Wales, Main language and general health characteristics.
  • Office for National Statistics, 2017. Statistical Bulletin: Internet Users in the UK: 2017.
  • Pathway, 2017. Digital health inclusion for people who have experienced homelessness: is this a realistic aspiration?
  • Stablein T, Hall, J, Pervis C et al. 2015. Negotiating stigma in health care: disclosure and the role of electronic health records. Health Sociology Review 24.3: 227-241.
  • Stonewall, 2015. Unhealthy Attitudes: The treatment of LGBT people within health and social care services.
  • Stonewall, 2017. Do Ask, Do Tell: Capturing data on sexual orientation and gender identity globally.
  • Tech Partnership, 2017. Basic Digital Skills UK 2017: summary of findings.
  • Tinder Foundation 2015, Doing Digital Inclusion: Health Handbook.
  • Tinder Foundation 2016, English My Way Phase 2 Evaluation: Final Evaluation Report.
  • Tinder Foundation, 2016. Dementia and Digital.
  • UK Gay Men’s Health Network, 2004. Sexual Exclusion: Homophobia and health inequalities: a review.
  • Williams, Heather; Varney, Justin; Taylor, James; Fish, Julie; Durr, Patricia, Elan-Cane, Christie. 2010. The Lesbian, Gay, Bisexual and Trans Public Health Outcomes Framework Companion Document.

Is there a need to review the EHI analysis at a later stage?

This equality impact assessment is considered a living document. If issues arise during the full deployment of the service, stakeholders will be consulted and the EIA will continue to be monitored and updated on a six-monthly basis until March 2020 when it will be subject to another formal review.

Last edited: 12 February 2019 3:52 pm