Participation and the "good" citizen: using routine health data for research in National Health Service England

TY - CHAP

T1 - Participation and the "good" citizen:

T2 - using routine health data for research in National Health Service England

AU - Wyatt, David Mark

AU - McKevitt, Christopher John

PY - 2018/8/30

Y1 - 2018/8/30

N2 - Since 2006, National Health Service England (NHS) has reframed itself as both a provider of universal health care and a leader in health research. In the last decade, the NHS has invested in developing and supporting research infrastructures and research projects. Now, work is underway to digitalise routine patient records across sites of health and social care so they can be linked together, used for care delivery and mined for research. The repurposing of routine health data for research, often done on the basis of optout consent, raises numerous questions about the nature of such research participation, consent and it’s implications for our understanding of contemporary citizenship.This paper draws on two case studies, (1) the controversial care.data programme in England which aimed to use all primary care patient records in England for research and commissioning purposes and (2) an empirical study of the process of engaging community members in discussions on a local research database of anonymised, primary care records. It explores how emerging practices of harnessing routinely collected, digital, health data for research present new, passive modes of participation in research and raise questions about the value of the raw and resulting data. The paper ends by reflecting on the implications of such participation for our understanding of citizenship and the 'good' citizen in the context of a country with universal health care.

AB - Since 2006, National Health Service England (NHS) has reframed itself as both a provider of universal health care and a leader in health research. In the last decade, the NHS has invested in developing and supporting research infrastructures and research projects. Now, work is underway to digitalise routine patient records across sites of health and social care so they can be linked together, used for care delivery and mined for research. The repurposing of routine health data for research, often done on the basis of optout consent, raises numerous questions about the nature of such research participation, consent and it’s implications for our understanding of contemporary citizenship.This paper draws on two case studies, (1) the controversial care.data programme in England which aimed to use all primary care patient records in England for research and commissioning purposes and (2) an empirical study of the process of engaging community members in discussions on a local research database of anonymised, primary care records. It explores how emerging practices of harnessing routinely collected, digital, health data for research present new, passive modes of participation in research and raise questions about the value of the raw and resulting data. The paper ends by reflecting on the implications of such participation for our understanding of citizenship and the 'good' citizen in the context of a country with universal health care.

KW - health

KW - participation

KW - assetisation

KW - NHS

KW - research-led NHS

M3 - Conference paper

BT - Society for the Social Studies of Science Annual Meeting (4S), Sydney

CY - Sydney

ER -