The rise of non-communicable diseases (NCDs), such as heart disease, cancer and diabetes, has sharpened the focus on longstanding issues with health systems across both developing and developed economies. According to the United Nations Department of Economic and Social Affairs, the roots of the changing disease burden cut across demographics (such as aging populations), and widespread changes in lifestyle (particularly poor diet, lack of exercise, tobacco smoking, and alcohol consumption). To make matters worse, health systems are typically geared towards acute and curative care rather than preventive and long-term care, with the bulk of health services provided by scarce clinicians, using expensive health care assets. As these dimensions collide, health benefits (for example, life expectancy) are beginning to plateau, while costs are rising sharply.
And yet, it is clear that the global sense of urgency on NCDs has not yet been matched by concerted action, or even a clear action plan, targets and timelines. This is due, in part, to the complexity of the task; the causal web that underlies NCDs forces us to innovate. This insight is not new. Nearly a decade ago, in 2004, the World Health Organization’s “Mexico Statement on Health Research” requested “all major stakeholders to strengthen or to establish activities to communicate, improve access to, and promote the use of reliable, relevant, unbiased and timely health information.” Again, in 2007, a consensus paper in the journal Nature entitled “Grand Challenges in Non-Communicable Disease” stated: “[We must] explore the interactions of behaviour, environment and genetics in framing risks and determining outcomes... Data and research repositories will also be essential, and standardization, where possible, will allow international comparisons and help global partnerships.” And yet, progress on transparency and data sharing has been very limited to date.
Where there is challenge, there is opportunity. The global healthcare market already exceeds $7 trillion and is growing fast; the societal costs of non-communicable diseases alone have been estimated at $47 trillion by 2030. Significant economic value can be created by flattening the curve, thus elevating the potential to capture this value through both traditional health businesses (such as the pharmaceutical industry) and non-traditional health businesses (such as health informatics and communication).
In the context of increasing pressure on health systems, advancements in information technology can now dramatically improve the quality and availability of health-related data, from the population-level right down to the individual. The effective use of such data is transforming our ability to identify, target and deliver interventions intelligently. Data integration promises more effective and more cost-effective interventions, as well as the chance to open up innovation beyond the traditional scope of health systems. Put simply, data holds the key to helping health systems act as true ‘systems,’ that is nodes acting in a coordinated manner to achieve integrated goals. In turn, this transformation can help better manage the growing challenges of NCDs (as well as other diseases), and unlock unprecedented opportunities for health research and development (R&D).
Disruptive innovation is taking place on a larger scale outside the traditional R&D markets (Europe, the Far East and the United States). Health data is no exception. For example, the Health Authority in Abu Dhabi (HAAD) has pioneered a unique data system that underpins the entire health market in the emirate. In Abu Dhabi, health data for every resident is processed in real-time through a secure, online clearing house called Shafafiya (Arabic for “transparency”). Copies of the data are stored on a secure, universal database, which serves as a central ‘source of truth’ for facilities, professionals, insurers and the regulator (this hub is called KEH, “Knowledge Engine for Health”). The Abu Dhabi system is far more than simply a record; it is now processing ePrescribing, eAuthorisations, and eEligibility Checks. From late 2012 the system will be fully integrated into user-accessible disease management programs through a secure cloud computing interface.
According to Progress in Cardiovascular Disease’s “The Abu Dhabi Cardiovascular Program: The Continuation of Framingham,” in Abu Dhabi, KEH already provides invaluable data for the entire health system. In addition, HAAD is now building a unique, population-wide, secure health cloud based on KEH through a scalable NCD programme called “Weqaya” (Arabic for “prevention”). The Abu Dhabi solution is adaptable and scalable, and eHealth transaction costs are near zero. HAAD has recently made its basic architecture and source code public (through the Shafafiya website), and has been approached by a number of countries for support in implementing the Abu Dhabi model.
With health data size does matter. Greater scale means greater statistical power, and an ability to derive more value at the granular, even individual, level. Scale can transform the statistical power of data analysis for a range of clients, such as:
- Pharmaceutical companies
- Health insurers
- Employers
- National and local governments
- Companies with products that affect health, such as food, exercise
- Academia
In addition, growth in participation will help attract new entrants. Building momentum creates positive feedback as with Internet start-ups such as Google and Facebook. Such effects have already been seen in analogous data systems (for example, Visa and MasterCard which dominate the data portability market in personal finance). To make sound and rapid progress, the approach must be grounded in solid scientific evidence, and ensure rigorous data security, whilst embracing open innovation.
Towards a Global Health Data Strategy
There are five keys to meeting the NCD challenges through eHealth:
1. Deal with ethics upfront
The ethics of data collection, storage, use and destruction are currently focused on a single issue: confidentiality. Security and consent continue to be central to health data ethics, however there is now a growing theme: failing to fully use data that could save lives and improve health.
Conversations are now underway (for example, the World Economic Forum “Rethinking Personal Data”) on a new formulation for health data that simultaneously addresses both these issues. A new compact must be codified in legislation and hard-wired into systems. A scalable IT solution will help drive the conversation and unlock the global opportunity. Other data systems, for example the Bankers’ Automated Clearing Services (BACS) and personal finance systems, such as Visa and MasterCard, provide lessons that can be applied as we seek to balance confidentiality and portability with health data. Building on ubiquitous web technologies such as secure authentication, data encryption, and key management a scalable solution can be made very secure. Data identifiers can be anonymised with decryption keys owned and managed by individuals or on their behalf by data guardians. A range of health systems around the world have already begun to implement eHealth solutions and provide exemplary legislation and regulations that can be adapted.
And yet, in many geographies data protection laws were drafted decades ago, and there is concern that technology is advancing more rapidly than legislation and regulation. Now is the time to address the concerns head-on to create a more sophisticated, though no less robust, formulation. Central to this will be ensure that important (and valuable) information can be unlocked, while the essential rights of all parties, particularly consumers, remain protected.
As with the journey from gold coins to paper money to checks, credit cards, PIN numbers, and eMoney it will be important that the fundamentals of health data are preserved along the way. The countries that get this right first will develop significant first-mover advantage.
2. Ensure open innovation
The data standards should be open-source, and an application’s programming interface (API) created for a range of health related “Apps” as push-pull clients of the database. Akin to the power of iTunes to innovate on Apple hardware and iOS platforms, managed diversity can help drive innovation and deliver global health impact.
3. Build community fast
Again, size does matter. Greater engagement creates scale-up for impact and bigger datasets that generate the statistical power required to drive radical new analyses and create a revolutionary approach to protecting and improving health. The growth of internet companies, such as Google and Facebook, demonstrates the momentum that rapidly scaling-up community brings.
4. Don’t compete – integrate
There have been considerable efforts to standardize health data (for example, diagnoses/symptoms and signs–WHO International Classification of Disease (ICD), activity–Current Procedural Terminology Codes (CPT), and clinical observations–Logical Observation Identifiers Names and Codes (LOINC). In addition, the Healthcare Leadership Alliance (HLA) has spearheaded efforts to create a common language for health data transmission.
Some countries have already made great strides in building large health datasets; examples include Denmark and Singapore (plus Iceland in population genomics). Other countries are exploring the creation of health datasets (for example, India and China), seeking to link health data (for example, the United States), or currently creating national health data systems (for example, Australia). A smart strategy aims to integrate such international efforts rather than competing with them. Rapidly scaling-up the community covered by a shared dataset exponentially grows the value proposition for new joiners. In addition, there is much that can be learned from other governments, for example Abu Dhabi, where the health regulator (HAAD) has created a Data Access Panel to share anonymized health data, and recently made its data standards and technical code open-source. A successful health data clearing house solution will be compatible with a range of health languages, generating a standardized database.
5. Partner for diversity and growth
Exposing a rich source of data to analysis by leading experts in the fields of epidemiology, pharmaceuticals, eHealth and public health will yield novel insights leading to the development of precisely targeted and calibrated public health programs. Critical to success will be achieving a balance of public, private, and civil sector groups, each doing what they do best to achieve common goals. A specific priority is training a skilled team of health data analysts – the generation who will work behind the scenes to make the real advances happen. With data flowing, previously untapped sectors can, and should, become involved in health, such as the marketing and creative industries, proving health can be attractive, accessible and fun! As The Journal of Health Communication’s “Communicating Health through Health Footprints” suggests, open data may even be used to drive innovation in key areas such as food, urban design and schools by influencing consumer choice—shifting the demand function.
Summary
There have been many revolutions in healthcare: From germ theory came the development of antibiotics and vaccines, and from the discovery of DNA came innovative treatments for cancer and the genomics revolution. We now stand on the verge of another revolution. The complexity and scale of NCD challenges comes at a time when technology has matured to the point of secure scalability. Global leaders must play their role in shaping legislation, supporting investment and ensuring advocacy.