Towards a Health Informatics Infrastructure Revolution
Crowdsourcing good data may not be as impossible as it sounds.
Indeed, in 2017, my company, Macroscope Consulting Network began preliminary investigations into a joint venture with Sam Lee's Blockchain Global.
While those investigations did not yield the joint venture, we nevertheless relished the opportunity to articulate in an executive summary, our vision for an informatics solution to the many failures that currently characterise the health data space globally - and particularly in the US.
Decentralisation via permissionless blockchain could underpin what we believe will be an informatics revolution, resulting in the unprecedented capacity to value health data accurately.
For the purposes of this discussion, we will refer to the 6proposed cryptocurrency attached to this project as, Hiicoinj (Health Informatics Infrastructure Coin)
The scope for product development - both physical and informational - is so enormous, it offers the potential to disrupt the pharmaceutical and healthcare industries in previously unimaginable ways.
The Business Summary:
The moral and economic urgency of health information systems reformation is universally acknowledged, yet no viable solutions have emerged until now.
Having identified essential flaws in all existing health reform models, both commercial and government sector, Macroscope re-imagines data collection methodologies and their epistemological/nosological analytical constructs, underpinned by rigorous, expert analyses of best available evidence.
Leveraging the momentum of the dual trends of blockchain and the Open Data/Open Science movements, our solution is elegant, inherently viral, and has the potential to disrupt and rationalise global health care delivery, research, product and policy development.
Addressing The Customer Problem:
Global health informatics are currently primitive, and unintegrated, at every level: all stakeholders suffer from closed, irrational information systems offering perverse incentives for bad practice and invalid information.
Inevitably, this leads to medical errors, diagnostic and nosologic incapacity, vast public/private money/resource waste, and unnecessarysuffering and death. It may also be the single greatest impediment to drug discovery.
Where there have been attempts at rationalisation and connection, these attempts have been characterised by poor security, poor implementation, or outright collapse due to the sheer weight of these elements and others that conspire to make health informatics infrastructure the most devilish of problems.
Market Failures to Date:
Only a radical, user driven, viral systems restructure will be able to replace the current sclerotic information architecture.
Without a global, interoperable approach, political, bureaucratic, structural, and cultural resistance to change doom any top-down approach to failure.
In addition, current epistemic flaws in diagnostics, nosology, as well as barriers to scientific knowledge-sharing make both large scale attempts and existing grassroots approaches to informatics inherently invalid, and unable to scale upwards.
We believe companies such as Gem Health, are tackling the informatics problems at entirely the wrong end, rendering their products obsolete before they even make it to market. Meanwhile, the competitive space we seek to inhabit is replete with vaporware (such as Prescrypt - which attracted much fanfare last year) and failed promise.
Towards a Solution and Unique Competitive Advantage:
Macroscope envisages an informatics ecosystem tied to a currency that accurately values good health information - whether that is personal health data, or data emerging from crowdsourced clinical trials. We call this currency, Hiicoin.
Hiicoin is designed for the specific purpose of fuelling a ground-up, viral/social approach to informatics reform, underpinned by the communications, epidemiological, epistemological expertise of its global network of doctors, researchers, and ethicists, intent on scientific and epistemological reform.
Unlike so many coins that have flooded the cryptomarket since the world at large discovered blockchain in 2017, Hiicoin has a functionally intrinsic purpose and is not a useless bauble designed to distract the investor from the lack of regulatory framework around the offering. When a company like Patientory raised $7.2 million in an ICO for a coin whose only two features included 'asset appreciation (and I have a nice bridge to sell you that would go beautifully with your appreciating Patientory assets) and for use within the Patientory business ecosystem.
Now... when someone tells you their coin has value because it can be used inside their product ecosystem, the first question you need to ask is, why couldn't we just use fiat? What intrinsic function does your coin serve that could not be achieved with fiat? Patientory has no answer to that question, because it is nothing but insurance industry marketing hype that had hopped on the blockchain bandwagon. And when you're on the blockchain bandwagon, you soon see that all the cool kids have a cryptocurrency, so you figure you'd better get yourself one too.
With this in mind, Macroscope's vision for a Hiicoin entails the coin doing heavy lifting where fiat can't. The coin itself must have capacity to interact with the data which it must value. Ultimately, individuals can elect to share their de-identified data in a set which patients, doctors, researchers and policy makers can access, while the Hiicoin currency has the potential to accurately value this information and provide incentives for its sharing.
Further distinguishing our solution from potential competitors is our envisaged modular, inherently interoperable structure eliminating the need for expensive, logistically and bureaucratically complex, lumbering legacy systems with their inevitable redundancies and obsolescences.
Our infrastructure would offer the agility of modular frictionless information sharing and analyses and providing individuals with an unprecedented, rigorous, mathematically and epistemologically validated programme to record, integrate, analyse, and if desired, share their health information, rendering meaningful inference from correlations, harnessing the personal bioinformatics revolution, and pulling together patient data from multiple sources, either automatically (ie from a wearable) or through intuitive, rewarding input prompts.
Modules that incorporate every aspect of life - ie not simply medical, but aspirational, or parental goals - game-like incentives, user driven communities, and above all a currency that accurately values people’s information, could drive uptake and restore data ownership to the patient, resulting in immense empowerment and - perhaps counterintuitively- increased privacy.
The many moral benefits of patient information ownership are compounded by the societal and epistemological good. For those committed to the highest levels of security, our system would allow for cold storage of one’s own health data via permissionless blockchain. Of the many goods that may accrue, perhaps it is the increased difficulty of clinical trial fraud and other forms of scientific misconduct that is most appealing. Indeed decentralisation renders the degree of difficulty necessary for data manipulation at a level few could counter. One might even be tempted to dream of crowdsourced oversight, the likes of which inspired such worthy endeavours as Publons, but which to date have not appreciably impacted rates of misconduct.
The power of this information for the individual is further enhanced by its easily shareable nature: not only can communities build organically, fomenting virality; but barriers to entry for doctors, institutions, and government are minimal.
Our solution is by its very nature scalable and expansionist, envisaging auto-catalytically forged pathways into increasingly complex systems, bypassing the mess, irrationality, and connectivity dead ends of existing bureaucratic processes while avoiding the inherent fragility of centralised systems.
These elements fundamentally differentiate us from organisations such as, HealthKit and NPS Medicinewise, which encourage doctors to share patient data - without adequate consent procedures - within profoundly impoverished and primitive informational ecosystems.
Not only are HealthKit’s and NPS’s practices highly problematic from an ethical perspective, any conclusions they seek to draw from their data are fundamentally compromised by current research epistemological and methodological failures.
In essence, these organisations simply cannot succeed because they are bound by their inherently flawed top down approaches to information gathering that force a 20th century informatics solution onto our current health data challenges.
In contrast, as the Hiicoin system expands, it could offer not only unpolluted datasets, but novel, cost effective, generalisable and reproducible models for randomised controlled trials and epidemiological studies.
It could provide vital, real time, safety information regarding treatments’ adverse events, offering governments an invaluable tool for saving lives and healthcare spending.
Central to Hiicoin is patient empowerment and ‘trust’ (via ‘trustless’ systems), disruption of corrupt and outmoded industrial practices, and the ability to manufacture and sell a variety of products - physical as well as informational - within its ecosystem.
This reimagining of health informatics infrastructure has the potential to restart currently stalled therapeutic discovery, allowing for innovative, effective, and safe pharmaceutical development and a healthier, more empowered population able to realise - and benefit from - their own health data’s multiple layers of intrinsic value.
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