Copyright

David Ingram

Published On

2023-11-17

Page Range

pp. 395–526

Language

  • English

Print Length

132 pages

9. Creating and Sustaining the Care Information Utility

How, Where and by Whom?

  • David Ingram (author)
Chapter of: Health Care in the Information Society: Volume 2 - From Anarchy of Transition to Programme for Reform(pp. 395–526)
We come now to the most challenging questions concerning the care information utility: how, where and by whom will it be created and sustained, and under what governance arrangements? This chapter looks to the wider and future scene, to consider how the work described in Chapters Eight and Eight and a Half can be extended and sustained, in the context of greater opportunity and need for individual self-management of care and supportive services that move from a fragmenting culture of ‘What is the matter with you?’ to an integrative culture of ‘What matters to you?’ We must embrace an iterative and incremental approach here, where we learn by doing. The chapter is thus not prescriptive; it rather reflects on the nature of the challenges faced and what we should have in mind in framing our policy and practice in tackling them.

Central to this will be the approach and method adopted for implementation of a coherent and trusted information utility that every citizen can feel part of and contribute to, which helps and supports them along the way as they seek health and wellbeing in their own lives, and the lives of those they care for. The chapter highlights the importance of the Creative Commons and public domain governance that bridges with and preserves the non-exclusive relationship with private enterprise. The story of common land and its appropriation to private interests through the eighteenth-century Enclosure Acts in the UK, is visited as a parable of common ground in the Information Age. It discusses the harm that restriction of intellectual property does in blocking innovation that tackles intractable ‘wicked problems’, which require connection and collaboration on common ground, within diversely connected communities of practice.

The chapter then focuses on the work of implementing and sustaining the care information utility and the environments, teams and communities whereby it is enabled and supported. It looks at the different qualities of leadership that such pioneering endeavours require and exemplify, and playfully compares them with the principles outlined in The Art of War, the classic text of Sun Tzu, which is much used in elite management courses on leadership. With its focus on people and environments, this part of the chapter draws a great deal on people I have known and worked with, and environments we worked in and created together, and is thus especially personal and autobiographical.

Trust in and recognition of individual and communal roles and responsibilities must unite citizens with the multiple professions and communities of health care practice, around shared goals for the care information utility. Governance arrangements will thus constitute a third major component of implementation of a utility that is coherent, effective, efficient, equitable, stable and life-enhancing, in support of health care services for the Information Society of tomorrow.

These threefold challenges of implementation will require strong alliances—the theme I reflect on, in parenthesis, at the end of the chapter.

Contributors

David Ingram

(author)

David Ingram’s career from 1967 spanned posts in industry, the NHS and University Medical Schools. After undergraduate physics at Oxford and several years in the medical engineering industry, he studied computer science and completed doctoral research on the mathematical modelling of biological systems, at University College London. His first academic post was at The Medical College of St Bartholomew’s Hospital, London, from 1975, where he was appointed Professor of Medical Informatics in 1990. From 1995-2011, he was the founding Director of the UCL Centre for Health Informatics and Multiprofessional Education (CHIME). David participated as partner and reviewer in UK Research Council, NHS, national e-Science and EU Health Informatics programmes and projects, including leading the EU GEHR Project (1991-94). This laid the foundations for the ISO-adopted openEHR specifications for a novel, vendor and technology neutral method for standardising the design of electronic health records, now being taken forward internationally by the openEHR.Foundation, of which he is the Founding President and Chairman of the Board of Governors. He is a founding Trustee of the OpenEyes Foundation, which is developing and marketing opensource software for ophthalmology, now providing the care record for 40% of UK patients. In retirement since 2010, he is focused on keeping well – eg by learning and using a new language, tracking lively grandchildren, following new physics, and learning to dance properly! Recently, he has become active in promoting a novel new technology to provide prescription glasses at very low cost for the developing world, where their lack causes extreme hardship.