There is a yawning gap between the potential of digital technologies to transform health care, and the everyday constraints on efficient data use at health clinics and hospitals to improve patient treatment.

Stronger policy frameworks for data sharing and data re-use or retrospective use, based on patients owning and controlling their own data, are key ingredients of propelling change forward.

This was a key theme of a Business at OECD Forum on Health: Digital & Partnerships that took place today at the Organisation for Economic Co-Operation and Development (OECD) headquarters in Paris, involving speakers and panellists from government, industry and patient groups.

“Linking the biological revolution with technological innovations, this is what I call digital health,” said Ameet Nathwani, chief medical officer, Sanofi, in a keynote address. He described how all aspects of health care and management, from public prevention to clinical treatment, are being transformed by the explosion of digital innovation.

At the same time, in actual patient experience with their own health systems, digital technologies are not necessarily registering improvements, said Mark Pearson, OECD deputy director, Employment, Labour, and Social Affairs Directorate.

“It [the potential] is so far away from the day to day reality that it is actually quite off-putting,” he observed, noting that when he was treated at a Paris hospital recently for a venomous snakebite, he was attended by 12 doctors who often failed to share data about his condition between them. That is just one example of how at the health system level, records remain fragmented and health care providers reluctant or ill-equipped to share.

Health system data rules often impede patients’ own access to their own personal information for ongoing treatment, said Despina Spanou, director for Digital Society, Trust and Cybersecurity at the European Commission, which is developing new policy frameworks to give patients control over their own data.

“Your electronic health record should be yours and it should be usable,” she noted, saying that a new EC initiative aims to address this. “I find it extraordinary that I can access my bank data from wherever I am, but not my health data. If I am in visiting Paris and I live in Belgium, no one knows my blood type. This is what we are trying to address.”

As of 2017, only half of OECD countries regularly linked their existing data sets even to monitor basic indicators of health care quality, noted Angel Gurria, OECD Secretary General, in a second keynote address.

However an OECD Recommendation on health data governance, endorsed by OECD health ministers last year, provides a framework for greater data harmonisation.

The Recommendation calls upon countries to develop and implement frameworks for greater data harmonisation, so that more countries are able to benefit from statistical and research uses of data in which there is a public interest, and from international comparisons.

Balancing efficient data sharing and use, including retrospective assessment of patient data in light of new and emerging treatments, with patients’ natural concerns for data privacy remains a major challenge, acknowledged Nicole Denjoy, Health Committee chair of Business at OECD.

“A big issue is security,” she said. “Hospitals are very weak in terms of security. People are very afraid. Hospitals need to be more efficient [in managing data]. Technology is a tool but it cannot be everything.”

Pearson and other panellists at the forum also urged the private sector to partner with health systems more directly to unlock digital health potential faster and in responsible ways.

“The reason we don’t have experiments in health policy and health care going on is that the whole idea of experiment raises the possibility of failure, and you cannot experiment without acknowledging the possibility of failure,” Pearson noted.

“But there are some countries and health systems that are willing to experiment and the private sector can get involved. There is a safe way to work with the health care system … which also doesn’t immediately have people shouting at you about trying to make profits and undermining the equity of the system,” he said.

Thomas Cueni, vice chair of the Business at OECD Health Committee, said digital advances are making research and development on new drugs more efficient, and facilitating some aspects of regulatory approval. But new approaches need to be extended to health systems, ensuring that patient data is used optimally across the rainbow of research, prevention and treatment.

“We need to become much better in terms of making the healthcare system more efficient and effective,” said Cueni, also director-general of the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA).

Still Cueni and other panellists at the forum sounded an optimistic note, asserting that the digital transformation is having a net benefit on health.

The biological revolution triggered by the mapping of the human genome, together with IT innovation will “change medicine forever,” said Nathwani.

“Doctors in China can interact with a chat box that will diagnose you, follow up and deliver results,” he said. “AI [artificial intelligence] can read CT scans better than cardiologists, and this is going to revolutionize work flow in hospitals, the FDA has approved the first digital therapeutics, which can now be prescribed by doctors.”

“There are phones that can carry all of your health data and 25,000 apps being developed to turn that data on,” he continued. “Health is the second most searched item on the internet. People come armed with information; and being guided by physicians instead of being told what to do is empowering them.”

Ultimately, said Nathwani, the digital innovation will “democratise health.”

Image Credits: OECD.