View from the future

Simon Easteal and Pythia Demonsthenes step back from 2050 to brief us on a century of healthcare.

Nearly 100 years ago, in 1953, the structure of DNA was revealed, heralding a new age of biomedical discovery. Fifty years on, the new millennium dawned and the human genome was sequenced, signalling the beginning of the fantastic genome voyage. People of industrialised nations had expectations of improved health and longer lives. US president Bill Clinton -- himself a picture of health and glamour -- predicted that children born back then (in their 50s now) would know cancer only as a sign of the zodiac.

But the astrologers did a better job of prediction, and as we know now health benefits were few and far between. Ailing biotechnology and pharmaceutical companies merged and merged again as patents expired, regulations became more onerous and new blockbuster drugs failed to appear. By 2020 only two large corporations, the drug duopoly, survived. The biomedical model of the 20th century (the pharmaceutical age) was itself terminally ill. At the same time, our parents and grandparents expected better health services while living longer and longer. The 'new old', as they became known, would not age gracefully and quietly, as people had in earlier generations. They had grown up expecting to get what they wanted and now they expected long, healthy lives. Blue rinse brats!

Medicine in the early 21st century seems as crude and barbaric to us now as the practices of the 19th century did to people then. Foggy MRI scans, broad-spectrum drugs with nasty side-effects and patients who knew more than their doctors. Today's vibrant, dynamic, global healthscape was unimaginable. The blooming of our health system was like the growth of the World Wide Web in dying years of the 20th century. Now ubiquitous, powerful and pervasive, its arrival was silent and largely unnoticed. What surprises health historians of the 2050s is that as late as 2020 people expected better health to be delivered by doctors (the medical professionals as they were then known) and by the economic juggernauts of the time, 'the pharmas'. To everyone's surprise, it was delivered instead by technologists riding the wave of the new media (then still sometimes called 'the press').

In 2014 the Museum of Media History (MME) published its classic account of the decline of the fourth estate and the rise of EPIC, the Evolving, Personalised Information Construct [1]. EPIC was described as "the system by which our sprawling, chaotic mediascape is filtered, ordered and delivered. Everyone contributes [most as both producers and consumers of content] -- from blog entries, to phone-cam images, to video reports, to full investigations." Developed in 2014 by Googlezon (formed when Google and Amazon merged), it used fact-stripping robots that dynamically created personalized news stories, and was built on the Google Grid. Its success marked the demise of Googlezon's main competitor, Microsoft.

EPIC's impact on healthcare was slow in coming, but by 2030 the outline of today's health system had emerged. Following the Standards Wars of the early 2020s the MEDical Information Construct (MEDIC) was established as the universal standard. An older standard known as the Personal Health And Life Long Information Construct (PHALLIC) continued to be used for a few years in parts of the United States, where it first arose, before becoming limp and ineffective. MEDIC was more than just a standard: it was the information infrastructure that empowered people to manage their own health, and not be controlled by the power brokers that dominated the health industry in the late 20th century.

A defining and surprising feature of the Media Wars of 2010 was that none of the players (or winners) were media organisations themselves. Ossified in their processes and perceptions, they had the agility of a freight train needing to turn right at the crossing to avoid a collision. Similarly, the established players in the health industry -- hospitals, pharmaceutical companies, government health departments -- were absent from the battlegrounds of the Health Standards Wars of the early 2020s. When the World Health Organisation called a global summit in 2025 to discuss ethical, intellectual property and privacy issues, its agenda was already irrelevant, pre-empted by MEDIC's widespread adoption, acceptance and success.

The science

It's hard to believe the health we enjoy today was rare even a generation ago. The last 100 years has seen 'health' displace 'medicine' as a concept. Health is about prevention of sickness and physical decay, and about the treatment of causes, not just symptoms. The story of how our health system of the 2050s was born -- the road to MEDIC -- begins in the 1940s, when the first computer was built. The British built this 'thinking machine' to help them beat the Nazis (Dyson, 1998) in the second (and last) great global conflict. Designed to crack the Nazis' encrypted commands, the machine (known as 'Colossus' to its friends) was a brute compared to today's wearable supercomputers. But the task Colossus faced is much like that faced by today's HealthGrid, which underpins MEDIC. HealthGrid is a fabric of billions of computers holding trillions of bits of health information all linked in real time to information about millions of people, the world's expanding repository of scientific and medical knowledge, tens of thousands of research projects and trials. While Colossus' job was cracking coded military instructions, HealthGrid is designed to crack the code of good health. It was not for 40 years, however, that Colossus' decedents were recruited to build the first frail parts of MEDIC.

In 1980, James Fickett and his fellow researchers in the Theoretical Division of the Los Alamos National Laboratory established Genbank as a repository of gene sequences, which were emerging for the first time from research laboratories. Genbank would eventually move to the National Centre for Biotechnology Information (NCBI), within the US National Library of Medicine. Founded in 1988, NCBI became a driving force in the emergence of digital life science.

Celera's sequencing of the human genome cemented the fusion of IT and life science. IBM's establishment of its Life Sciences business in 2000 and then Global Healthcare and Life Sciences Division in 2004 signalled the maturation of Information Based Medicine (at the time IBM identified primarily as an IT company). These events also established private and corporate capital as driving forces in biomedical research. Government funds continued to be important well into the 2020s, but had become insignificant by the late 2030s.

Molecular bioscience was by now well established in medicine. Individual genomes were sequenced as early as 2004. By 2020 personalised genoming had become a routine procedure.

By 2010, government funding agencies had begun to require robust information management systems as a condition of funding. Similar requirements were being made for clinical trials and within a decade, standards were established and systems were in place that would allow direct access to research results within companies and institutes around the world. The Global Research Grid was born. The system was originally only intended to improve productivity and use of resources within the research community, but once set up it became much more widely available. All that was required was the impetus to access it.

On February 1, 2020, the world's first modern biomedical research institute in the world opened its doors in Sydney, Australia. Unlike other institutes of the time, its only permanent staff were executives and IP lawyers. The institute had no laboratories of its own. All research was carried out under contract elsewhere, mostly at facilities in India and China. Warner Brothers was a substantial investor in the new venture, bringing its expertise in aggregating talent on a project basis for the entertainment industry, which it rapidly applied to the new growth area of biomedical science R&D outsourcing. Scientists, technicians and engineers, mostly free agents, were brought together to work on individual projects. What we now know as the Bollywood model of scientific research was born. The new institute was able to immediately tap into the Global Research Grid.

The patients

While scientific information was rapidly digitised, health information was slower to take hold in the digital world. In 1996 Healtheon (later absorbed into WebMD) was established. Moving on from his success in founding Netscape, the legendary Jim Clark founded Healtheon as part of his dream of removing all waste from the US healthcare system. The late Michael Lewis wrote [2] "To his way of thinking there were healthcare professionals who clearly served a purpose. They were called doctors. And there were people who clearly needed healthcare. They were called patients. Everyone else in between... could go. As Clark put it: 'We want to empower the doctors and the patients and get all the other assholes out of the way, except for us. One asshole in the middle'." But his dream was never realised. It did not go far enough; one asshole, it turned out, was one too many.

Initial attempts to digitise medical information focused on organisations and institutions rather than individuals. It was not until attention shifted to people that the real impact of IT on health was felt. Leading the way was the UK National Health Service, which in 2003 launched HealthSpace, providing people with their own personal health planner. Although ultimately unsuccessful, HealthSpace led to wide acceptance of people accessing, controlling and eventually owning their own health information.

The Australian government's foresight in piloting one of the earliest patient-centred record systems in 2007 paid off and led to the partnership that gave rise to GoogleHealth. Launched in 2010 and powered by GoogleGrid, GoogleHealth allowed individuals to store privately or publish their own health information. All components of the healthcare system participated and for the first time diverse information provided by patients and their own monitoring devices was combined with records supplied by hospitals, pathology and imaging services and general practitioners.

Initially intended for people with their whole lives ahead of them, it was the so-called baby-boomers, facing old age and with time on their hands, who most enthusiastically embraced the new system. They eagerly populated it with information about themselves and insisted that their doctors do the same. In time people published their own health information in anonymous form and were able to compare aspects of their health and lifestyles with millions of others. GoogleHealth's powerful search and analyse engines allowed participants in the fast growing Health Grid to see 'virtual populations' of individuals who were genetically and behaviourally much like themselves. They could see health trends in these populations that had real and direct meaning to their lives, and started to adopt the practices of their 'virtual peers' to derive the same health benefits.

The knowledge

In 2000, NCBI began Open Access science publishing when it launched PubMed Central, its freely available, fully indexed, digital archive of life science journal literature. Public Library of Science, founded in 2003, and other Open Access publishers followed. In 2005, the US National Institutes of Health began the process of requiring the free availability of results from publicly funded research. By 2010, all major funding agencies around the world had followed and, with back-issues scanned and digitised, virtually all the world's published scientific knowledge was freely available, immediately, to everyone, all the time.

By 2010 people around the world were for the first time given continuous direct access to effectively all the world's published scientific findings. But much of published work was written in arcane language, it was fragmented, and its significance was not clear. Editors and aggregators emerged, interpreting, digesting and repackaging material for specific purposes combining their own expertise with computer editing technology. These new professional bioinfomediaries were the precursors of today's Health Guides. Science Commons, launched in 2005 as part of the Creative Commons initiative provided the legal framework that ensured ongoing control over the use of content by authors in an open access environment. It fuelled the growth of self-publication that lead to the demise of commercial and independent scientific publishers and eventually the peer review system. By the 2020s peer review had been replaced by online expert review and impact was measured by citation, access and download data, and peer commentary. Fully open, dynamic assessment and evaluation of research was here to stay.

Science Commons' contribution to the nascent Open IP movement extended beyond copyright to include patents, but the story with patents would be different. Patent offices, overburdened and understaffed and lacking expertise were at breaking point by 2008. Two breakthroughs enabled their survival and the survival of the patent system. First, patent offices around the world made their filings and other content freely available to developers of natural language processing and related technologies. Intellectual property transaction costs became negligible as searches and analysis of dependencies and overlaps were automated using open standards. Second, the patent offices open-sourced their examination process. Drawing on expertise from around the world, they were no longer dependent on the limited capabilities of their own staff. A system that had once threatened to stifle progress was now restored as the engine for new technologies and business processes. When it was finally integrated with Science Commons and the System for Automated Royalty Payments, innovation flourished.

The convergence

In 2022 Googlezon launched MEDIC, plugging EPIC's powerful engine directly into the Global Research Grid, the community of bioinfomediaries with their knowledge-mining capabilities and GoogleHealth's individual health management platform.

MEDIC generated anonymous aggregated lifetime information about all its participants and combined these with dynamically edited digests of published knowledge and research results to produce relevant information constructs tailored specifically to meet individual needs. MEDIC directly linked individuals with healthcare providers, with researchers and engineers, and with the scientific and medical literature. Finally there was a system with no "asshole in the middle".

'Health guide' arose as a new profession. Part doctor, part patient advocate, part journalist and part investment advisor, health guides provided assistance and a range of ancillary services to MEDIC users.

MEDIC 's real success was based not on its powerful technologies, but on the business processes that these enabled. MEDIC became a platform by which individuals engaged directly with research production companies in studies and clinical trials. This direct access greatly enhanced the value and scope of these studies and trials. It also substantially reduced transaction and insurance costs and the need for regulatory oversight. Many more people participated and the scope of data collection became virtually limitless. More importantly, people became active participants rather than the passive subjects they had been in the past. Participants were given tradable shares in exchange for their participation. This single measure was transforming. Wealth and health converged and health literacy soared. Participants became acutely interested in the progress of trials and the outcome of research projects. They could also actively invest in the companies managing projects and withdraw their participation at will.

MEDIC users also had access to extensive de-identified information about the health of others with similar genetic make-ups, life histories, using the same medications, dietary and exercise regimes, or suffering similar ailments. They were able to compare their wellbeing and progress in real time and determine for themselves the efficacy of their health management programs.

The legacy

'Health maintenance' has become a global pastime. Most people are now active participants in research and contribute data from all aspects of their lives. They also spend more time studying and understanding their own health than they do watching sport or managing their finances. Some research institutes embraced the Bollywood model and survived: reinvigorated and transformed from their former selves, they are now key elements of the Healthscape. Most did not. Clinging to their old ways, they limped on, doing what they had always done well -- producing arcane work of little relevance beyond the confines of their own inward-looking world. They contributed little and their activity was no longer sustainable. Government support waned, their reserves dwindled, and they were sidelined and finally closed.

Remnants of the former biotechnology and pharmaceutical industries survive to this day. The ones that did survive were able to adapt and set up their own successful research production companies. Many of today's leading biotechnology production facilities in India and China were once part of large transnational companies and many freelance researchers and engineers were once their employees.

In the 2050s we enjoy healthcare that is largely free from government control. Home-based care and mobile clinic companies work with health guides to provide most services. Some hospitals survive, but thankfully almost all of the crumbling monoliths of the past have disappeared. If MEDIC's parent company were ever to consider abusing its monopoly position, the demise of Microsoft is there as a reminder of what would happen; the open source spirit is alive and well and ready to leap into action whenever the need arises.

MEDIC works because it is what we want our health system to be. It's what we got when people, not genes or cells or hospitals, became the focus of our attention, when we harnessed powerful technologies and put them to work in an open market. And in the end it works because it gave us control of our own destinies.

Those of us approaching our second century of life demanded something better and were allowed to have it. In the process we changed the world -- for a second time. We can look back at the achievements of the last half-century knowing that when our grandchildren reach our age they will be looking forward to the next stage of their long and healthy lives.

Simon Easteal is at the John Curtin School of Medical Research, Australian National University, Canberra & Pythia Demosthenes is at the Institute of Future History.

References

1. Sloan R. 2005. EPIC. http://www.robinsloan.com/epic/

2. Lewis, M. 1999. The New New Thing. Hodder & Stroughton, London.

3. Dyson, G. Darwin Among the Machines: The Evolution of Global Intelligence, 1998