Health care data blog series: Why health care data often underdelivers

2. Data is siloed across and within industry sectors, limiting its comprehensiveness, and therefore representativeness.

Health care data is most valuable when different types of data can be connected. For example, combining clinical and claims data can produce useful insights on the cost-effectiveness of care because it has detail on both cost (from the claims) and the specific services provided (from the clinical record). But different data types, containing different insights, often are siloed across industry sectors, preventing their synthesis.

Health care data ownership, by sector

Even more burdensome, organizations within sectors often shield their data from one another for competitive reasons. Hospital systems, for example, are wary of sharing claims data with one another out of fear of shining light on their relative pricing. But organization-specific data is far less representative of population needs and outcomes than data aggregated across organizations.

When organizations use these limited datasets to inform clinical protocols or power algorithms, the result is often unrepresentative results that can adversely impact patient care and outcomes.

3. Leveraging patient data for 'extra-clinical' purposes could increase the risk of breaching patients' privacy.

HIPAA indeed does offer a strong legal framework for securing sharing sensitive patient data. But the increased volume of data sharing needed to achieve the industry's data ambitions—and the consolidation of that data in the hands of a small few organizations—inherently exposes patients to greater risk that their data is breached or their de-identified data is re-identified.

Data challenges cause pain points for all sectors

These and other ecosystem-wide data challenges cascade down into pain points facing many health care stakeholders:

The depth and breadth of pain points facing each key industry sectors demonstrates that a desire for solutions to our data challenges is widespread. In our final blog of this series on health care data, we will propose three working solutions for how cross-industry leaders could rethink their approach to collecting and analyzing the data our industry needs to achieve its data-related goals.

Health care is behind nearly all other industries on digital transformation. Covid-19 created an opening for change—purchaser demand for digital care skyrocketed and the unsustainability of the industry’s digital-averse business models were exposed. Venture investment dollars have flowed freely ever since.

In other words, the ambition is large, and the stakes are high. Meanwhile, the barriers are many. Making health care truly digitally enabled will require changing the incentives that underlie industry dynamics altogether.