Data, metadata, and workflow in healthcare informatics

• Main Author: Solomonides, Anthony Eugene
• Published: University of the West of England, Bristol 2018
• Online Access: https://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.742286

This dissertation considers a number of interlinked concepts, propositions and relations, and puts forward a set of design theses, to support the role of informatics in the overall goal of knowledge-based, information-driven, integrated, patient-centred, collaborative healthcare and research. This rather ambitious scope may be delimited by exclusion: the work is not concerned explicitly with genomics or bioinformatics, but it does encompass certain aspects of trans- lational medicine and personalized healthcare, which I take to be subsumed in some sense under “knowledge-based” and “information-driven”. Although I do not exclude public health informatics, my exposure extends only to surveillance of infectious diseases, patient engagement, and the effectiveness of screening programmes. I do take ethical, legal, social and economic issues (ELSE) to be included, at least to the extent that I aim at an infrastructure that encompasses these issues and aims to incorporate them in technical designs in an effort to meet ethicists’, lawyers’, policy makers’, and economists’ concerns halfway. To a first approx- imation, the aim has been to integrate two strands of work over the last decade or more: the informatics of medical records on one hand and the distributed computational infrastructures for healthcare and biomedical research on the other. The papers assembled in this dissertation span a period of rapid growth in biomedical inform- atics (BMIi). Their unifying theme was not declared programmatically at the beginning of this period, but rather developed, along with individual pieces of work, as my engagement – and that of my students – with BMI became more focused and penetrated deeper into the issues. Nevertheless, I believe I have learned something from each project I have been involved in and have brought this cumulative experience to bear on the central theme of my present work. My thematic vision is of a scientifically literate and engaged community whose members – citizens, patients, caregivers, advocates – are sufficiently interested in medical progress and in their own health to take ownership of their medical records, to subscribe to a research service that informs them about progress and about current studies that may interest them, and so take responsibility for their own and the health of those close to them. This entails many things: agreements on what constitutes legitimate data sharing and when such sharing may be permitted or required by the patient as owner of the data. It calls for a means of recognizing the intellectual contribution, and in some healthcare economies, the economic interest of a physician who generates that record. Ethically, it requires a consenting policy that allows patients to control who may approach them for participation in a study, whether as a subject, as a co-investigator, as a patient advocate, or as a lay advisor. Educationally, it requires willingness on the part of physician- researchers and scientists to disseminate what they have discovered and what they have learned in terms that are comprehensible to the interested lay participant—but do not speak down to her.