Opinion: The hidden costs of data protection in public health

Community health workers review reports from a health facility in Kambia district in Sierra Leone. Photo by: CDC / CC BY

Health data is commonly seen as a high-risk arena for individuals, businesses, nonprofits, and governments, but little attention is given to the cost of overprotective data policies. Overly restrictive data access policies can cause damage by hampering the very effectiveness of their own health systems.

We now see situations where preventing access to available health data prevents the proper diagnosis, treatment, and care of patients.

Concerns about patient privacy, in addition to the economic and geopolitical impact of misused or misunderstood health-related data, create a climate of fear around health data. Such concerns have led many government authorities to adopt uncompromising lock-down policies on their country’s data to the detriment of improvements that could come from growing data sources.

The hidden costs of such lockdown policies are becoming clear: We now see situations where preventing access to available health data prevents the proper diagnosis, treatment, and care of patients.

For example, in some countries and programs:

• Medical diagnostic results are not widely shared among all partners treating patients.  Sometimes national programs or ministries will not give NGOs or other implementing partners timely access to diagnostic data. Frequently, these very partners coordinate or supervise treatment for patients and they have no access to how many or which ones are being positively diagnosed. Rapid movement of diagnostic data can mean rapid turnaround time for diagnostic test results and getting patients onto treatment faster — but only if it’s shared with appropriate partners.

• Cascade of care information remains in protected silos. In this digital age, the potential exists to measure high-level effectiveness across the whole cascade of care from diagnosis through treatment to outcome. Connecting these dots in real-time can create a fact-based and statistically valid feedback loop for all stakeholders in the health system, including treating physicians; clinic and hospital staff; global funders; NGOs; and drug companies. Based on real-world evidence, decisions can be made about programmatic changes or drug safety and progress could be contracted from years into a few months. But major actors — ministries, donors, and the pharmaceutical sector — can only benefit if they are willing to share data.

• Operational data is kept from those who can make operations run smoothly. Specifically, operational data from connected devices, such as lab equipment and diagnostics, can provide valuable information about utilization, errors, supply stock-outs, training challenges, and effectiveness. Maintaining this equipment, understanding supply chain issues, and ensuring functionality on a daily basis is vital to keeping the health system functioning. Yet data gatekeepers or policy prevent the sharing of this digital information with groups responsible for supply; service and repair; procurement of new equipment; etc. In consequence, health systems suffer and technology remains unreliable, and quality of care does not achieve its intended goals.

On the funder side, whether it’s ministries or global donors and NGOs, appropriation data can be added to other data sets to provide rapid feedback about return on investment for health care investments. Each data set, if widely available, can be interpreted by different players in the health system who can deliver new and valuable insights.

The digitizing and secure reporting of diagnostic data from labs and clinics enable a host of insights if responsibly used and shared. Benefits include real-time disease surveillance and response; device and supply management for fleets of diagnostic devices; and the ability to respond rapidly to numerous clinical, staff training, and operational issues. These benefits are only possible if organizations are willing to work cooperatively and share information. In fact, there seems to be a direct correlation between the effectiveness of data and the degree to which it is appropriately shared among health system partners.

While patient privacy must be protected, we envision a time when NGOs and implementing partners, donor agencies and national governments work together to share appropriate access to aggregated, deidentified data sets that will lead to healthier people, countries, economies, and improved global health security. The costs of hampering or delaying data use are no less real because they’re hidden.

About the authors

  • Chris%2520macek%2520headshot

    Chris Macek

    Chris Macek is CEO of SystemOne, a global leader in moving infectious disease diagnostic data and turning it into actionable intelligence for patients, ministries of health, global funders, and other health systems participants. Chris was previously founder and CEO of Relyon Media, which developed large-scale software applications for U.S.-based government projects, universities, and the World Bank.
  • Nicolas%2520boillot%2520headshot%2520%25281%2529

    Nicolas Boillot

    Nicolas Boillot is COO and co-founder of SystemOne, Previously he was co-founder and CEO of a technology marketing agency. He is also a co-founder of Middlebury College's celebrated entrepreneurship program MiddCORE (Creativity, Opportunity, Risk & Entrepreneurship). He lives in Williamsburg, MA, with his wife and son, has been a private pilot for 25 years and is an avid skier and outdoorsman.