Confidence building. Data needs to be transparent and available to the public: former US health official

Data needs to be transparent and available to the public, says David Shulkin, a former health administrator and possibly the only one who stayed between US Presidents Obama and Trump’s administrations.

Shulkin’s observation on data transparency comes even as Governments and companies increase their digital footprint, getting patients to share more personal data, while not giving patients similar visibility on data involving these institutions.

“Transparency of data, things like the number of hospital beds, the supply of oxygen, the ability to how many patients you can handle in treatment, that transparency of data I believe strongly needs to be there for the public to see, particularly in a democracy like India and the United States,” Shulkin,, Undersecretary of Health for the US Department of Veteran Affairs in the Obama administration and Secretary of Veteran Affairs in the Trump administration, told businessline. Shulkin is also an advisor to Indegene, an Indian technology-led healthcare solutions company.

Belongs to the patient

He said that countries need to invest in data infrastructure and data interoperability to help make healthcare accessible. Companies have made a business model out of keeping the data to themselves and trying to monetise it, he observed, adding India and the US governments were outlining interoperability standards, be it the National Health Authority or the US’ Office of the National Coordinator.

“You also need to adhere to the principle that this data belongs to the patient, that they have the right to have their own data, to be able to move their data between providers and that principle drives a lot of the foundation of how you build an interoperable platform.”

Citing his tenure at the Department of Veteran Affairs, Shulkin said, “I used the public release of data to not only internally improve my organisation, but to regain some of the confidence and trust of the people we served (US veterans)... So I published our wait times, which had never been done before. I published our prescription rates of opioid use, which had never been done before, and I published all of our quality data, which had never been done before, so that people could actually see how we were doing and where we where we were falling short so that we could get help. We could ask the private sector to help us in areas where we weren’t able to do the job that we needed to do alone.”

Common definition

To share data across the private-public divide, he said, it was essential to have a standard definition of the data elements. “You can’t share data if you’re defining a data element differently in the private sector or in the public sector, and those data elements need to be transparent, they need to be publicly published so that everybody knows what they are and it’s not kept a secret,” he added.

For companies operating in different countries with different standards, there’s always a concern, Shulkin agreed. But data transparency was the best way to address such concerns, “showing what the standards are and showing the data,” he said. He was responding to a query on trust issues involving the pharmaceutical industry when incidents like the Gambia tragedy occur, where children die, possibly due to cough syrups from an Indian company.

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