How to unleash the enormous power of global healthcare data

(Unsplash, 2018)

This article is brought to you thanks to the collaboration of The European Sting with the World Economic Forum.

Author: Vanessa Candeias, Head of Global Health and Healthcare System Initiative, World Economic Forum, Emmanuel Akpakwu, Project Lead, Value in Healthcare, World Economic Forum Geneva & Stefan Larsson, Senior Partner and Managing Director, Boston Consulting Group

Two thousand three hundred and fourteen exabytes.

This is approximately how much space it would take to store the total volume of global healthcare data by 2020, according to a report by the EMC and IDC. To put this in context, it would take approximately five exabytes to store all the words ever spoken by humankind. If all the data stored in 2,314 exabytes were to be stored on tablet computers and stacked, it would reach 82,000 miles high or circle the earth 3.2 times and would equal all the written works of humankind, in every known language, 46,280 times over.

Let that sink in, while I let you in on two non-secrets:

The potential of this amount of data to meaningfully improve healthcare delivery across the value chain is transformative. It’s no secret that despite the enormous global healthcare spend (around $8 trillion, according to the OECD), the quality of care outcomes remains significantly varied, with some countries spending more yet achieving less in terms of care quality. To worsen matters, this expenditure is expected to continue rising significantly to cater to an ever-ageing population experiencing higher rates of chronic disease. At some point, the cost of care delivery becomes unsustainable and care quality suffers.

Technologies already exist to capture and harness data, enabling significant improvement in care outcomes while reducing cost and waste. However, these technologies currently operate in silos, using different frameworks and standards and storing information in ways that other systems cannot understand. For example, data captured in the electronic health records system of hospital ‘A’ is often uninterpretable by the electronic health record system of hospital ‘B’. This ultimately prevents health ecosystems from leveraging the vital power of data to help prevent sickness, better treat patients who are sick, and to ensure a high quality of life post-treatment.

The answer to this challenge is simple: standardisation.

In the early days of the internet, standardisation provided a governance framework and set of “rules” (for example, TCP/IP) that anyone creating content anywhere on the globe needed to adhere to. Standards enabled the utility, scalability and global growth of the internet. The same can be said for GSM, the global set of standards that enables your iPhone to communicate seamlessly with your friend’s Samsung.

If healthcare is to truly leverage the power of data, it is vital that standards are developed to break down silos, thus improving the accessibility, utility and scalability of healthcare data. Doing so will have a profoundly positive impact on medical research, drug pricing, clinical decision making, patient empowerment and, ultimately, improvement in care outcomes. We see excellent examples of this in the Netherlands and Sweden, where great efforts are being made to ensure the standardisation of data and outcomes metrics, with very positive results.

Technological innovation often outpaces the ability of policymakers and industry to regulate and harness these innovations. The absence of robust and enforceable guidance from regulators, as well as the lack of any unifying effort on the part of industry, is arguably what got us into today’s fragmented healthcare data landscape. Whether for competitive reasons or otherwise, the global healthcare system has not had a single, unifying, public-private collaboration to drive convergence in health data and informatics standards. Until recently, that is.

The importance of a multi-stakeholder, public-private approach in the development of a healthcare data standards framework cannot be overstated.

Five key levers should drive such efforts:

1. The creation of a Digital Health Bill of Rights to guide standardisation and ensure privacy concerns are addressed

2. Landscaping existing health informatics standardization initiatives

3. The coordination and endorsement of global stakeholders

4. The capability to demonstrate the value of informatics standardisation through use cases

5. The ability to implement solutions and recommend policy

The World Economic Forum, in partnership with many leading organisations and experts drawn from across the healthcare and technology spectrum, is developing a global roadmap for health informatics standardisation, to be launched in Davos 2019. The roadmap will lay a guiding foundation for how global convergence on a set of health informatics standards can be achieved by focusing on the five key levers described above.

Every single piece of information across all known mediums in the world today can be stored on about 1500 exabytes of space. In less than two years’ time, we will have more healthcare data than we have the capability of storing today. Our ability to harness its power to shed light on new ways to tackle existing problems – such as rare diseases, chronic diseases, mental health, cancer, and many more – is an opportunity that we cannot afford to miss. Better still, we don’t have to circle the earth 3.2 times to achieve it.