Ensuring Health Data Collection Protects Patient Privacy, Equity

Since the onset of the COVID-19 pandemic, leaders have developed and deployed health data collection technologies to track virus exposure, monitor outbreaks, and aggregate hospital data.

As communities begin to navigate vaccine rollouts, public health officials and healthcare leaders will have to determine how to manage monitoring systems created in response to the virus, what processes are required in order to immunize populations, and what new norms these technologies have generated.

A critical part of these conversations is the impact these technologies could have on patient privacy and health equity. With the country transitioning from crisis mode to life beyond the pandemic, leaders have the opportunity to make positive social change and design more proactive strategies.

In order to better understand the intersection of governance and surveillance technology in the context of public health emergencies, the Social Science Research Council convened a cross-disciplinary, multinational group of experts in the summer of 2020.

“The purpose of these conversations was to discuss the landscape of human rights and social justice with regard to technology-driven public health services,” said Rebecca Gluskin, PhD, chief statistician and deputy director of Measure of America.

“The resulting group – the Public Health, Surveillance, and Human Rights Network – had a series of conversations over several weeks to talk about the tension between public health technologies developed during the pandemic and their impact on civil liberties.”

In a recent report, the Public Health, Surveillance, and Human Rights Network outlined how leaders could develop public health technologies that better balance the collection of public health data with privacy rights.

“COVID-19 led to a dramatic buildup of public health surveillance technologies across the world – namely contact tracing software, but also now vaccine compliance tracking. These technologies have been developed with little regard for the potential misuse of personal data, as well as the disparate impacts on vulnerable communities,” said Gluskin.

The group recognized that organizations need better systems to advance equitable access to health resources without allowing for unbridled surveillance, Gluskin noted.

“The tension between public health and individual rights was one of the central conflicts of this report. The pandemic has really shaped each of the countries that were represented as networks and their approach to public health surveillance,” she said.

“This global network of leaders representing industry, civil society, government and academia came together to study the landscape and talk about the different situations that were developing at the time.”

In particular, leaders should consider the impact public health technologies could have on marginalized populations.

“Low-income communities and communities of color have been disproportionally impacted during the pandemic. These communities have higher infection rates, while frequently being denied just access to medical care and having to live and work in more dangerous conditions,” said Gluskin.

“For a variety of reasons, including past negative experiences with government officials, lack of access to things like smartphones or reliable internet, and fear of negative repercussions like deportation or job loss, these communities are perhaps less likely to provide their personal information to contact tracing or vaccine management software.”

Data collection tools like vaccine tracking technologies could exacerbate existing health disparities and contribute to poor outcomes among underserved populations, Gluskin said.

“One example is access to reliable internet, or even the ability to navigate the vaccine registration sites. There's already a gaping digital divide for elderly populations that may not be able to use these tools,” she stated.

“There is also the question of transparency about how the data will be used and stored, and what the sunset clauses are for the data being collected right now. There is not enough documentation or early transparency as to how these technologies are developed and how they're going to be taken down.”

To create a new framework for health technologies that support public health efforts but don’t exacerbate health disparities, leaders should consider several key elements.

“There are five major points that came out of all these discussions. The first is data minimalism, or not taking more data than is needed to achieve the public health outcome,” said Gluskin.

“The second point is ongoing monitoring and assessment. We need mandatory sunset clauses and other mandatory expiration processes to make sure that the data isn't being misused, stored improperly, or used for future studies that individuals haven't consented to.”

There also needs to be transparency around gathering patient information, Gluskin emphasized.

“Governments need to make sure that the technology and data collection is taking place responsibly, and that there are clear intentions on how the data will be used. The fourth point is that there needs to be consultation and collaborations. Socially responsible technology must be constructed through an iterative process together with the communities that will be most impacted by the technology,” she said.

“Finally, the last point is that we need a renewal of the social contracts. We're at an inflection point right now that allows leaders to rethink the way they collect and use data. We want to maintain the balance between technology, public health, and civil liberties so that when the next pandemic happens – and it will – we have the foundation of public trust to act quickly.”

Going forward, groups like the one convened by the Social Science Research Council will serve to improve strategies and responses to public health emergencies.

“This network developed quite rapidly, and it allowed us to draw on expertise from the private and public sector, government, academia, public health, but also internationally because each country dealt with the pandemic and surveillance and technology in a different way,” Gluskin concluded.

“Networks like these need to exist on a continuing basis in order to address the future crises that we'll inevitably face.”