Event Catch-up! Protected Characteristics and Data Sharing in Healthcare

Did you miss the OHT London community hang-out on data sharing on protected characteristics?! Well never fear, we recorded the speakers' short conversation-starter talks!

The One HealthTech London Hub partnered with Privitar to host a community hangout to discuss health data sharing and protected characteristics such as age, race, sexual orientation and disability.

The health and social care sector is relatively advanced when it comes to using data, whether Big or small, electronic or paper, to inform better care. However, data-driven care is only as effective as the underlying data. Addressing inequalities in health outcomes and health service delivery requires access to high quality data, including on protected characteristics. The coronavirus pandemic highlights the challenges. Covid-19 has disproportionately affected men, who are black, Asian or minority ethnic (BAME). Data collection has improved, but sharing and using data on protected characteristics remains challenging from an information governance, legal, technical, ethical and sociological perspective. 

Topics that the event aimed to address:

• Why are we seeing different health outcomes for different groups? Can we identify correlation and/or causation between health outcomes and factors like ethnicity, socio-economic circumstances or unequal access to treatment? What can the data tell us?

• Does our approach to sharing change when a dataset contains information on protected characteristics? How should data governance models address overlaps between data protection, equalities and human rights law (e.g. GDPR, Equality Act 2010, Human Rights Act 1998)?

• If we decide not to share, what impact does incomplete training data (i.e. without data on protected characteristics) have on data-driven projects? Can we use legal bans on bias (e.g. in the Equality Act 2010) to guide thinking about harm before it occurs?

Speakers

• Sonia Patel, Chief Information Officer, NHSX

• Cerys Wyn Davies, Partner, Pinsent Masons

• Noa Dagan, Head of Data & AI-driven medicine, Clalit Institute

• Marcus Grazette, EU Policy Lead, Privitar

• Ele Harwich, OHT London

• Maxine Mackintosh, OHT

Whilst the bulk of the event was small group discussions under Chatham House Rule, catch up on great insights from Sonia, Cerys and Noa on YouTube here.