3 Big Data Governance Strategies to Combat the Opioid Epidemic

December 02, 2020 - As the opioid epidemic rages on in communities across the US, the healthcare industry has sought the help of big data to inform public policy and population health initiatives.

While large volumes of data can provide significant value to these efforts, organizations need big data governance strategies in place to protect and respect patients, according to a recent study published in conducted by researchers from the University of Massachusetts Amherst (UMass Amherst).

The opioid epidemic has led to substantial numbers of accidental injuries and premature deaths, the team noted. In Massachusetts, more than 4.4 percent of the population is estimated to have opioid use disorder. In 2017, the state had an estimated 2,056 opioid overdose deaths.

To address the opioid crisis, as well as analyze trends and inform public policies, the Massachusetts Department of Health established the Public Health Data Warehouse (PHD) in 2015. The PHD is a public health monitoring and research tool to link state government datasets and offer timely information.

“It’s an amazing resource for research and public health planning, but with a lot of information being linked on about 98 percent of the population of Massachusetts, I realized that it could cause some ethical issues that have not really been considered,” said Elizabeth Evans, associate professor in the School of Public Health and Health Sciences at the UMass Amherst.

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Researchers set out to identify concerns and recommendations on how to use big data on opioid use in ethical ways. The team conducted focus groups and interviews with 39 big data stakeholders, including gatekeepers, researchers, and patient advocates.

Protect patient privacy

Participants’ top concern with opioid big data use was patient privacy and respect, researchers stated.

“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,” the study said.

The team noted that shared big data governance systems could help to protect people with opioid use disorder from additional harm. Community Advisory Boards (CABs) can act as forums for these patients to voice their opinions about how data about them is stored, gathered, disseminated, and translated.

“CABs can be used to engage in transparent and collaborative activities, identify and respond to blind spots and other embedded limitations and uncertainties, and appropriately frame findings and policy implications. More broadly, shared data governance enables affected groups to make the most of their own big data resources,” researchers said.

Ensure equity and reduce disparities

Participants also voiced concerns about the potential for big data to be misused and exacerbate health inequities for people with opioid use disorder. Some datasets come with significant limitations and bias, including missing data or ill-defined variables.

Because the opioid epidemic has stemmed from systemic inequities, it is critical that stakeholders examine potential gaps in data.

“This population is generally unaware of big data and is excluded from deciding how it is created or used, representing significant asymmetries in big data knowledge and power. Also, this population faces added risks of OUD-related discrimination and stigma, elevated susceptibility to systemic disadvantages, and diminished opportunities to avoid or ameliorate consequent harms,” the team said.

“Furthermore, the benefits of big data on opioid use mostly accrue to future generations while any potential harms are borne today.” 

When developing big data policies and procedures related to opioid use disorder, researchers suggested that stakeholders view these individuals as a population whose status warrants added protections.

“It is also important to ensure that big data research mitigates vulnerabilities rather than creates or exacerbates them. Our results indicate that a few places to start are to prioritize health equity, set off-limits topics and methods, and recognize blind spots,” the group said.

“Participants called for better training of researchers on how to conduct health equity research and also the use of analytic methods (e.g., sample weights) to enable broader generalization of findings. Many pointed to aspects of data stewardship itself, highlighting how it could be structured to ensure big data are used for health equity.”

Promote transparency for increased public trust

Study participants noted that the institutions that are charged with creating and managing big data must cultivate public trust and ensure that benefits outweigh any potential harms. These organizations should make sure they clearly communicate how data will be used for the greater good, as well as apply high ethical standards.

“As big data stewards, governmental public health is responsible for establishing policies and procedures that enable ethical data governance,” researchers stated.

“Essential elements include transparent information on how big data is regulated, protections and potential risks for individuals whose data may be used, governance mechanisms, accountability pathways, and expected public benefits. These activities promote openness to public scrutiny of big data decision-making, processes, and actions.”

The findings emphasized the need for institutions to use data in a way that minimizes health disparities.

“Comments reflected participants’ recognition of how big data stewardship can minimize harms and ensure that research mitigates, rather than creates or exacerbates, vulnerabilities faced by individuals with opioid use disorder. Moreover, transparent processes convey respect for individuals and, by enabling public scrutiny, can help build trust,” researchers said.

The results indicate that although the use of big data can substantially improve the impact of the opioid epidemic, data governance strategies should be in place.

“Using big data to address the opioid epidemic poses significant ethical concerns that, if unaddressed, may undermine its benefits. Findings can inform guidelines on how to conduct ethical big data governance and in ways that protect and respect patients and society, ensure justice, and foster patient and public trust in public institutions,” the team concluded.