Hope or Fear? How My Voice Could be Represented – Public Understanding of Nationwide Electronic patients’ Records in the UK

This presentation is a response to the issues of citizens’ right arising from the emergence of IT technology vis-a-vis the former British national policies, Information for Health and Connecting for Health. The main purpose of these British policies was to develop computer databases of patient records ‘from cradle to grave’ whereby clinicians and medical researchers could access patients’ clinical records and medical history. The anticipated benefits of accumulated data included enhancing both public health and the quality of medical services and research. Whilst it could be said that these policies have been aborted, the core theme has still survived vis-à-vis the Social Care Act 2012 and other policies.

The downsizing of these policies could mainly be attributed to the shortage of financial and human resources, but certain issues arising from them contributed to the scrapping process of the policies, too. Specifically it evoked questions regarding, for example, citizens’ rights over their own medical data and the security of the e-database. The first issue deeply involves the matter of ‘informed consent’ in medicine, specifically on what terms and in what ways a personal and anonymised medical record can be used for medical treatment and research. The second question is that current research has revealed this the first issue to be deeply entangled with public concerns over data security. Hence further consultation is necessary over the development of such electronic medical records. In view of this, the presentation explores in what ways and on what grounds these questions have so far been articulated. Through mapping out the issues, this paper argues how those issues would have been encompassed within a range of other important sociological contexts of empowerment of citizens and communities–such as the representation of the voices of disabled and ethnic minorities, and of youth and the elderly.