Drugs are a problem at the best of times, but during Covid the problem has worsened due to the considerable strain people have been placed under.  With healthcare services also stretched to the limit, it’s not been a good time for society’s attempts to tackle the opioid epidemic.

New research from the University of Massachusetts Amherst suggests big data could offer a glimmer of hope by helping to better target efforts to where they’re most effective.  Such an approach also comes with various ethical concerns, however, which may undermine any benefits without clear governance policies in place to protect patients and society.

“Efforts informed by big data are saving lives, yielding significant benefits,” the researchers say. “Uses of big data may also undermine public trust in government and cause other unintended harms.”

Data-driven services

The Public Health Data Warehouse (PHD) was created in 2015 by the Massachusetts Department of Health to link state government data and help to prioritize health services and analyze trends that can then inform public policy.  The project initially focused its energy on the opioid crisis in the region.

“It’s an amazing resource for research and public health planning,” the researchers say, “but with a lot of information being linked on about 98% of the population of Massachusetts, I realized that it could cause some ethical issues that have not really been considered.”

The researchers interviewed stakeholders in the project, including patients and researchers, to try and explore whether potential misuse of the data is prevalent, and how such misuse can be safeguarded against.

“While most participants understood that big data were anonymized and bound by other safeguards designed to preclude individual-level harms, some nevertheless worried that these data could be used to deny health insurance claims or use of social welfare programs, jeopardize employment, threaten parental rights, or increase criminal justice surveillance, prosecution, and incarceration,” they explain.

Data misuse

The analysis revealed that a particular shortcoming existed in the limited means of measuring the usage of opioids themselves.  It’s a blindspot that is actually baked into the big data itself, and the researchers believe that it creates a biased set of results that produce unjustified conclusions.

They argue that the PHD exists in large part to improve health equity, but the limitations in data prevent them from examining or addressing the conditions that support the epidemic.  This, ultimately, exacerbates the health disparities that exist.

The research recommends a shared form of data governance that might see community advisory boards established to try and cultivate greater trust among the public, especially when accompanied by safeguards and transparency in the use of data.  They also argue that greater consideration should be given to the people with opioid use disorder themselves.

“When considering big data policies and procedures, it may be useful to view individuals with OUD as a population whose status warrants added protections to guard against potential harms,” the researchers conclude. “It is also important to ensure that big data research mitigates vulnerabilities rather than creates or exacerbates them.”