All data is not created equal. We must make health data more accessible.

Approaching the G7 Summit and G20 health meetings two years ago, business and non-profit groups would have been busy preparing actions that global leaders ‘could’ or ‘should’ take to improve equitable access to healthcare. Now, could and should have been replaced with ‘must.’

The pandemic has shown the need for multilateral collaboration to address the shortcomings in global healthcare systems, and, the potential for innovation to transform the entire healthcare ecosystem. 

An absolute ‘must’ in the fight to democratize healthcare is the digitalization and application of data. In diagnostics, treatments, vaccines and delivery of care, the pandemic accelerated innovation that once would have taken years to achieve. Collaboration and technological advancements accelerated the global response, and they must be enabled further to address the challenges that remain.

Data unlocks an unlimited range of opportunities in healthcare

Imagine a world where you can swallow a pill-sized capsule with a tiny camera inside taking pictures of your gastrointestinal tract. This device holds the potential to help doctors diagnose colon cancer earlier and more accurately using artificial intelligence algorithms trained with data from thousands of other patients. Imagine a diabetes insulin pump that learns your patterns and gives you personalized guidance to better manage your insulin. Imagine your child’s surgeon learning in real-time from the skills of the strongest surgical teams across the world through an online platform that is constantly learning and updating its training capabilities.

Use of big data: Privacy protection regulations must evolve to reflect technology advances

Healthcare innovation requires the ability to aggregate and analyze data often in ways not contemplated when it was initially collected. How do we seek permission to use data in the future in ways we have not yet imagined? 

Health data is among the most sensitive personal information, and privacy and security must be protected. Yet, individual patient consent often is not practical to obtain after-the-fact for such uses and privacy laws have not always evolved to allow for these beneficial uses without consent. This is an important topic in the G7 and globally. We stand on the cusp of using data and technology to accelerate great advances in prevention, diagnosis and treatment. We must find the way both to protect privacy and security and enable this great innovation for patient benefit.

These need not be mutually exclusive goals. The key is for policymakers to shape rules specifically for the healthcare context and to harmonize those rules across jurisdictions to the greatest extent possible.  The rules should be shaped with detailed input from healthcare stakeholders, including patients and clinicians as well as the researchers and technology innovators on the new horizon of innovation’s potential. Technological innovation can lead to new and better ways to protect privacy of sensitive healthcare data, even while enabling the critical data sharing needed to improve healthcare, through techniques such as improved de-identification methods and synthetic noise injection.

Policies without borders accelerate healthcare innovation

Diseases don’t recognize borders, yet data localization and data transfer rules focus largely on borders, not the life-saving learnings and improvements that can come from sharing anonymized data from systems around the world. Our collective ability to develop and deploy innovations is too often hindered by fragmented, unclear or unduly restrictive rules and policies. We must commit to an ecosystem where broad data sharing for patient treatment is facilitated across stakeholders.

Similarly, industry must do a better job showing how such an ecosystem accelerates research and the development of new therapies, and clearly explain the strong privacy safeguards in place.

Shaping the future requires collaboration and commitment

We must get the fundamentals of data access for healthcare purposes addressed, while still shaping and responding to immediate needs for clarity and harmonization of issues including interoperability and regulation of AI and machine learning. Engaging with the European Health Data Space and The Organisation for Economic Co-operation and Development (OECD) data recommendations are immediate opportunities. The B20’s Health and Life Sciences Task Force will submit actionable policy recommendations for accelerating innovation to the G20 later this year. 

I am optimistic for the revolution in innovation emerging globally, where providers recognize the positive role that the healthcare technology industry will play. But the policy environment must advance and innovate in parallel to better enable the great potential benefits for patients and healthcare systems.