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Nineteen students from the Law School, Graduate School, and Sanford School of Policy participated in a role-playing simulation course this spring in which they navigated the legal, ethical, and technological challenges involved in the collection and sharing of sensitive health data for research purposes.

In Law & Policy Lab: Data Governance, each member of the class was assigned a role of either hospital administrator, researcher, or patient advocate. Six cohorts of JD, Master of Public Policy, and Master of Bioethics and Science Policy students then spent the semester designing data-sharing collaborations to support the study of the long-term effects of COVID-19 infection known as “long COVID.”

Such collaborations, known as learning health networks, enable health care providers and health researchers to share information about a particular condition with the goal of improving patient outcomes faster than if they were working independently. First envisioned by the National Academy of Medicine in 2007, learning health networks are still in a developing stage. Early attempts have been successful at getting stakeholders to set aside competitive concerns, but difficult data governance questions have emerged, such as what constitutes an appropriate funding mechanism, how best to protect patient confidentiality, what limits should be placed on how information is used, and even where and how to store data.

Health care is one of the few sectors of the U.S. economy in which the use of data is regulated, which makes it an ideal context for a simulation course, said instructor Keith Porcaro ’11. In health care, reusing and manipulating data are critical to achieving breakthroughs in research; however, the act of collaboration often conflicts with medical privacy concerns.

Porcaro, the Reuben Everett Senior Lecturing Fellow and director of the Duke Center for Law and Technology’s Digital Governance Design Studio, encouraged the students to fully adopt the perspectives of people in the roles they were assigned to play. Inspired by board games, he developed “prototyping kits" to help students imagine what they wanted their collaboration to look like and translate those imaginings into something tangible.

“At the beginning, we ran them through design exercises and prototyping exercises to put them in the shoes of the teams they were representing,” he said. “The moment it clicked was when they started referring to their stakeholders as ‘we.’

“We’re trying to have them look at this not as an adversarial negotiation but as a collaborative effort to build something that’s going to work for everyone.”

In the course, Porcaro first asked students to consider a simple form granting parental consent for the collection of a child’s health information: Would they sign it? Are they engaged by it? What changes would make it more inviting? The answers informed the cohorts’ work, which included assembling a portfolio of key documents to support the end product. A priority of the course was to impart to students how decisions they make interact with existing systems of structural exclusion, either reinforcing the systemic impact or beginning to break it down.

“The [goal] is getting them to think about contracts and legal agreements not just as these things in isolation that connect only to law, but helping them understand how they change people's behavior and change people's perception of how accessible a system is,” Porcaro said.

A healthcare consultant before law school, Alan LeBlang ’24 already had an understanding of the difficulty of health data governance before enrolling in the course. He found it to be a valuable complement to Health Law and Policy and Administrative Law, which he took simultaneously, and said it informed his interest in practicing health law after graduation.

“The course really allowed us to try to balance the practical realities of data governance with the freedom of being in a classroom and understanding how this could actually happen in the real world,” LeBlang said. “Balancing innovation with the hard realities of our very rigid systems and finding ways to be creative while also complying with legal and ethical realities has been very exciting.”

While not necessarily aiming for a career in health care law, Alanah Herfi ’24 said she enjoyed using imagination and creativity to simulate an ongoing collaboration among stakeholders with often-conflicting interests. The role-playing enabled her to focus on the needs of one party, the way most lawyers do in practice, while also benefitting from the perspectives of students in other roles and from other disciplines that teach different approaches to solving problems.

“There are some courses like Negotiations where you do get to role-play, but you go back to being a student at the end of that day’s class,” Herfi said. “In this course, you're always in these roles because the whole class is centered around being in these roles and making this huge portfolio. It [required] a lot of listening, a lot of talking, a lot of collaborating, and just hearing the different viewpoints and considering how we could merge them into the best solution.”

Through the Digital Governance Design Studio, which is funded by grants from the Ford Foundation and the Omidyar Network, Porcaro conducts research on decision support tools, such as advice-giving software, for organizations that meet critical needs. A former data governance consultant, he also helps organizations make decisions about and build processes governing the data and technology on which they depend.

Porcaro has previously advised children’s hospitals on the design of learning health networks and is currently working with a group led by Massachusetts General Hospital to improve outcomes for bipolar disorder.

This fall, instead of a semester-long simulation on a single topic, Porcaro’s course will consist of mini-simulations on a broader range of data governance topics: how companies protect data, how research collaborations form, and how large public datasets are built. He is also preparing a large course for the spring on algorithms and artificial intelligence to provide students with a foundational understanding of technology, as they imagine deploying it in practice or critiquing an application.

“Especially as data and AI become top of mind for more and more clients, it's important for us to give students some exposure to the types of challenges they'll see in practice, no matter their practice area,” he said.

Ultimately, he believes the governance of other types of data beyond health information, such as environmental data and court data, is ripe for this model of teaching, and anticipates creating frameworks that other schools can use when designing simulation courses of their own. He hopes that students will come away with a greater appreciation for the role that lawyers can play in fostering innovative solutions, whether in data governance or other contexts.

“We are trying to show students that their legal skills can be used for other ends, and help them to think of lawyers as facilitators,” Porcaro said. “With their skills, they can help different groups come together and find common ground with agreements that will last and adapt to changing circumstances. It’s a different perspective for lots of students.”

Andrew Park is associate dean for communications, marketing, and events at Duke Law. Reach him at andrew.park@law.duke.edu.