The One HealthTech community and Privitar are hosting 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.
We need technologists, anthropologists, designers, lawyers and those lived experiences too, to join the discussion. The hangout will tackle questions like:
- 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?
Short, provocative talks from our panel followed by discussion in breakout rooms. The panel’s interventions will be recorded and available on demand. Discussion will be under the Chatham House rule.
17.30 - Welcome
17.35 - Panelists kick off, 3 x 10 minute interventions (recorded)
18.05 - Participants break into 3 x 15 minute group discussions (Chatham House rule)
18.50 - Return to plenary, feedback from groups
19.25 - Wrap up
19.30 - Close
Code of conduct:
This is a sensitive topic, which requires diverse inputs from a range of sectors, personal experiences and lenses. The OHT community prides itself on being open, diverse and inclusive. We always expect people to behave and communicate kindly and respectfully. We also always presume good intentions, and recognise that words may come out clumsily sometimes. However, if we feel anyone is violating respectful communication, or positive intentions principles they will be removed from the hangout. For the OHT community Code of Conduct, please visit the OHT website.