There is an increased focus nationally on how to improve access to data whilst maintaining the highest standards of security and confidentiality. Secure Data Environments (SDEs) are data storage and access platforms. Dr Sian Rees, the Director of Community Involvement and Workforce Innovation at Health Innovation Oxford and Thames Valley (HIOTV), chairs the Thames Valley and Surrey Care Records ethics and advisory group and has been funded to establish the Thames Valley and Surrey SDE, owned and run by the NHS, covering Buckinghamshire, Berkshire, Oxfordshire, Milton Keynes and Surrey. Two specific projects summarised below are helping to shape the SDE.
Working with Groundswell, HIOTV has launched ‘Food, Safety, then Data: Attitudes to Healthcare Data for Planning & Research’, presenting views on health and care data from people with lived experience of homelessness. This work explores how health and care data is perceived and how daily survival, past experiences of services and trust shape attitudes to data use. The findings reinforce that trust in data cannot be separated from trust in care. These resources highlight the importance of transparency, consent, dignity and clear communication.
- Download the Homelessness attitudes to healthcare data report (pdf)
- Watch the short animation featuring the voices of people who have experienced homelessness
HIOTV has also collaborated with Friends, Families and Travellers (FFT) on a qualitative engagement project providing insights into how healthcare data is perceived and, more importantly, how to build trust with communities often overlooked.
- Download the Gypsy, Roma and Travellers – Attitudes to healthcare data for planning and research report (pdf)
- Read Sian Rees’ blog: ‘Exploring trust – why working with communities is essential for trustworthy use of health and care data‘
- Watch a three-minute animation featuring voices from Gypsy, Roma and Traveller communities discussing their perspectives on personal health data issues.
- Watch a webinar exploring how healthcare data is perceived among Gypsy, Roma and Traveller communities – part of the ‘seldom heard’ webinar series – see below.