My Data, My Choice: Achieving Justice through Health Data Dignity

*** Important: this event is open to postgraduate students, staff, researchers and any affiliated partners at the Universities of Manchester, Bristol, and Edinburgh. To access this event, please ensure you use your institutional/work email address when registering ***

Join postgraduate students, researchers, and academics from the University of Bristol’s Centre for Health, Law and Society, the University of Edinburgh’s Mason Institute, and the University of Manchester’s Centre for Social Ethics and Policy (CSEP) for the first in a three-part webinar series examining current issues in healthcare law and ethics.

In this FREE webinar Dr Catherine Bowden (CSEP, University of Manchester) will present her co-authored paper (with Prof Sarah Devaney) entitled:

“My Data, My Choice: Achieving Justice through Health Data Dignity”

The presentation will be immediately followed by two short responses from Dr Emily Postan (University of Edinburgh) and Melanie Pottle Iddon (University of Bristol).

There will then be discussion in which everyone is encouraged to participate.

We look forward to seeing you there!

Schedule

3.00 – 4.00: Presentation and Responses

4.00– 4.30: Q&A

A link to the Zoom meeting will be send out to registrees closer to the date.

***T o ensure you receive the Zoom link, please register to attend by no later than 12.00pm on Tuesday 21 November***

Abstract

My Data, My Choice: Achieving Justice through Health Data Dignity

In May 2021, NHS Digital announced that their GP Data for Research and Planning (GPDPR) programme would collect patients’ primary care (or General Practice (GP)) data so that it could be used in a non-identifying form in medical research and planning. Over a million people opted out of the programme, prompting NHS Digital to delay it to provide more time to speak with people about their concerns. The GP Data Trust pilot study conducted online surveys, focus groups, and interviews in order to explore why people opted out and what this tells us about the features of data governance needed to alleviate their concerns.

This paper considers the interview data from the GP Data Trust pilot study, and argues that for many of those who have concerns over health data sharing, their health data (in particular primary care data) is part of their identity, including their values and interests in a similar way to parts of their body. Using Wolfensberger and Wrigley’s concept of trust in healthcare, we argue that in order to gain the trust of these individuals, the governance of health data sharing must therefore go beyond trust in competence to fostering trust in commitment to patients’ values and interests. This requires governance of health data sharing that protects patients’ data dignity. It is argued that in this way, two forms of data justice can be delivered: respect for patient autonomy and a more just distribution of the benefits of health research across society.

 

Event Link

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