A Database of our Maladies

India has the potential to use data innovatively for enhancing healthcare outcomes. However, it’s crucial to balance patient privacy with public good, defining clear grounds for data access and stringent punishments for misuse. The draft EHR legislation suggests patients “own” their medical data, but a nuanced approach focusing on access and control is needed. India has a unique opportunity to leverage technology for healthcare, but must strike the right balance between personal privacy and public good.

This article was first published in The Mint. You can read the original at this link.

On 25 September 2014, Thomas Eric Duncan checked into the Texas Health Presbyterian Hospital in Dallas, reporting fever, a runny nose and abdominal tenderness. A number of tests were conducted—blood tests, CT scans and the like—all of which came up negative, and so he was given some antibiotics and sent home. Fourteen days later, Duncan died of the Ebola virus and became the first person to succumb to the deadly epidemic within continental US.

Had Duncan informed the hospital that he had flown in from Liberia a few days prior, and had that fact been correlated to his symptoms, his treatment would have been very different. And he may have lived. But US medical triage protocol at that time did not require travel information to be considered as a medically relevant input.

This is the tragedy with all medical consultations today. They perpetuate the “tyranny of the urgent", affording doctors only enough time to deal with acute situations, rather than optimizing long-term care. This results in imperfect diagnosis with the kinds of unfortunate outcomes that led to the death of Duncan.

It doesn’t have to be that way. Thanks to technology, we now have the ability to bring nuanced, data-driven decision-making to the medical profession. We can, for instance, use longitudinal analyses of historical data to help identify (and therefore treat) domestic violence in ways that outpatient consultations cannot. We can apply contextual analysis to symptomatic information to improve our ability to treat diseases like strep throat by correlating symptoms with local demographic information in order to better ascertain how those symptoms should be treated.

In order to do this consistently and effectively, health information must be recorded and maintained electronically in a standards-based, interoperable database. The US government has spent close to $48 billion on promoting the adoption of health information technology—funds that had been primarily invested in building a system that affords greater integration of electronic health records (EHRs) with a view to enhancing the clinical decision-making process. This investment has, by all accounts, not been a runaway success. For the most part, this is because EHRs in the US have, historically, been collected and maintained in silos by disparate IT systems that don’t talk to each other.

India is on the verge of implementing an integrated health information platform and would do well to learn from all these mistakes. There are at least a couple of things that are in our favour. For one, unlike the US, we do not have large volumes of patient records locked up in data silos that don’t talk to each other. If anything, our problem is that we do not have a significant history of digital records that we can rely on. This allows us the benefit of being able to approach the problem on a greenfield basis and to prescribe in advance the standards based upon which all medical institutions must collect and store information. If we do this right, there is a good chance we will be implementing a modern system that is unprecedented in its design.

The second key factor is the government’s national digital identity system that can be used (without much effort) to link to the health information platform in a way that will allow us to ensure that diagnoses can be unified across all the clinicians that a single patient consults, allowing us to build a holistic picture of that patient’s medical history in a manner that most other countries currently struggle to achieve.

Armed with these powerful weapons, India has the ability to use data in significantly new and innovative ways in order to enhance diagnosis and improve outcomes for its users. That said, there are several important decisions to be made. It is incumbent on us to evaluate the impact of that business on medical privacy and the need to correctly balance patient privacy with public good. We will need to articulate the grounds on which this data can be accessed for public good—such as in the event of an epidemic—and clearly prescribe stringent punishments for misuse of this data for commercial or political gain.

While the draft EHR legislation seems to indicate that it will clearly describe medical data as being “owned" by the patient, I believe that a more nuanced articulation is called for—one that moves the discussion from who owns the data to who has access and control over it.

We have a tremendous opportunity to leverage systems and technologies to better inform our medical strategies in a way that other countries, bogged down by baggage, cannot hope to achieve. In the process, we owe it to ourselves to strike the appropriate balance between personal privacy and public good.