Driven by business interests, many healthcare organizations continue to use the pretext of patient privacy all too easily, to keep data locked away. It's time to review what this generation of patients really want.
When I started working in healthcare, I was speaking and writing about the lack of interoperability and its effect on cost and quality. Now, three decades later, despite advances in science and technology, unfortunately, most of the barriers to interoperability are essentially still in place. The financial incentives and business practices preventing interoperability are so entrenched that it’s taken a perfect confluence of forces to make cracks into heavily fortified data silos. Finally, market forces combining the entry of new big tech companies, a meteoric rise of consumerism in healthcare, and regulatory vigor are setting the foundation for change.
New Regulations Pave the Way
The Federal Health IT Strategic Plan released by the Office of the National Coordinator (ONC) is a broad plan that seeks to address these structural problems. First, we’d like to applaud the ONC for its extremely well thought out and comprehensive plan. It succinctly captures the wide range of challenges and the major components that need to be addressed in order to break down those barriers. The plan also provides a clear structure and guidance on these issues.
The plan, however, would benefit from a measure of prioritization of the objectives and strategies, or guidance on which should receive more emphasis in the immediate future. Among the 13 objectives identified in the plan, several would generate a more immediate impact and would accelerate progress and momentum of the other objectives if they received more immediate attention.
Patient Ownership of Data Controls Everything Else
The plan specifically calls out, and correctly so, the paramount importance of patients’ right to control their health, and how this must include the right to access and control their health information.
For decades, national policy on healthcare data privacy has been based upon the determination that healthcare data is especially sensitive, vitally important, directly impactful, and needs to be more secure than even our financial data. As such, it has been protected, held highly confidential and locked away as a fundamental condition of its collection. The protection of patient data has worked its way into every aspect of healthcare from the design of all technology, research, direct patient care, and even the design of physical facilities.
While the goal of keeping patient data confidential has been largely achieved, an unintended consequence of this protective effort has led to a lack of medical data availability — contributing to misdiagnoses, medical errors, suboptimal outcomes, and even patient death. A Johns Hopkins Study estimated that more than 250,000 people die each year due to medical errors, which is the third leading cause of death. Tragically, many of these deaths are preventable and the lack of relevant clinical data at the point of care is universally recognized by clinicians as a major reason medical errors occur.
The Challenge of Democratizing Data
Driven by business interests, many healthcare organizations continue to use the pretext of patient privacy all too easily, conveniently, and frequently to keep data locked away in order to preserve their own financial self-interest and market share.
Meanwhile, over the past 20 years, other industries from banking to navigation apps have allowed consumers to make their own choices about how private they want their data to be, in return for other tradeoffs in their lives. This generation of citizens openly shares its physical location with third parties to more conveniently navigate the roads and avoid delay. Consumers share their biometrics with fitness companies so they can be guided more effectively in exercise. They share their purchases and spending habits so they can more efficiently search for the product that best fits their need. They share videos of their home interiors and exteriors so they can watch their pets during the day or ensure the safety of delivered packages. They share their banking and financial information so they can improve their credit scores. And so on…
ONC has the capability to emphasize this point in both its policy-making and its ability to influence industry dialogue and perceptions. It’s critical to revisit our cultural perspective on the importance of the government, in combination with physicians and big industry, as the entities determining the rules for healthcare data privacy for citizens. This is an important step in helping clear the road for achievement of the ONC’s heath IT goals. As an example, even getting to a single national identifier would allow the ONC to better establish standards and procedures to share data and dramatically accelerate the achievement of the identified objectives. Subsequently, technology companies of all sizes can make decisions on where to invest development dollars.
This generation of citizens has demonstrated their capability, interest, and capacity to understand complex issues and make decisions for their own lives. It’s time to get them engaged on this topic. We may just find that historical assumptions that are generating so much complexity are no longer valid.