8½. Halfway Houses towards openCare

Abstract

This half chapter introduces missions and movements that have evolved from adventure of ideas, through anarchy of transition, into central components of programmes for reform of health care services, now extending across the world, at scale. It is not a pitch for their adoption or a comparison with other endeavours. It is an eyewitness account of how they came to be, and a perspective that has unfolded alongside of what the future might be created to look like. It is these aspects that seem important to record, so that progress can continue to be made. The principal story told is of a mission to help bring coherence to electronic care records. This is the story of GEHR and openEHR—persisting along a thirty-year stretch of my songline. Its survival and continuity have rested on the enduring commitment of its pioneers and a growing, vibrant, humanly variegated (and sometimes quarrelsome!) community of creative and determined participants. It has had stalwart friends and supporters but, until quite recently, enjoyed almost negligible public funding. It is an iterative and incremental story of implementation that has embraced new perspective, approach and delivery of digital care records. I have described the three top priorities of openEHR as implementation, implementation and implementation. Only by enacting such vision can one learn how to do it. As Robert Oppenheimer wrote in his immediate post-war Reith Lectures, which I referenced in the book’s Introduction, in attempting such a mission we discover who we are. The second story, told in less detail and combining with the profile of its founding pioneer, Bill Aylward, in Chapter Eight, is of OpenEyes. This initiative has evolved and disseminated a state-of-the-art open-source eye care record, now supporting around fifty percent of ophthalmology services in the UK. It has been made possible by a public sector-led collaboration of clinicians, NHS Trusts and companies. Care records are concerned with capturing the ‘Who did what, when, where, how and why?’ in support of the health care of individual citizens. This half chapter seeks to encompass these same attributes. It is a story of the creation of halfway houses that have been instantiated today, along a path creating common ground on which the future care information utility can grow in the coming decades. The mission to imagine, create and sustain this coherent, citizen-centred, well-governed and trusted resource will be central to future health care, as the world turns upside down in transition from Industrial Age to Information Society. If trillion-dollar funding streams had been utilized differently, the kinds of mission described here might have saved the world much money, heartache and lost opportunity. Enacted faithfully and well, positioned at the centre of the care information utility that they can now help to create and sustain, such missions will contribute shared common ground that enables the world of health care to become a more caring, equitable and sustainable place.