Citizen Engagement in Precision Public Health

By Courtney Lyles, PhD and Kirsten Bibbins-Domingo, MD, PhD

At the Precision Public Health Summit held this week at UCSF (sponsored by the Bill and Melinda Gates Foundation and the White House Office of Science, Technology, and Policy: see), we were inspired by many great discussions and ideas. While the field is still figuring out how to define and conceptualize the core elements of “precision public health,” a broad interpretation that is relatively simple and straightforward includes: a discipline for using the best methodologies and datasets to tailor interventions (from medical screenings and treatments, to community wellness and prevention programs, to science-informed advocacy and policy) that better meet the needs and priorities of local communities and individuals.

As leaders in this field continue to refine this definition, one certain next step will be grappling with the task of compiling and linking datasets collected for a variety of purposes: medical records, mental and behavioral health data, housing information, public health surveillance/outreach data, childcare and school records, environmental indicators like pollution and water quality, individual self-reported tracking data, and the like. Putting the obvious logistical challenges aside for moment, community and citizen engagement in this data aggregation process is a key approach that emerged in our Summit discussions. In other words, the work of precision public health cannot be entirely successful unless citizens help to set the agenda, especially at the local level.

Understanding and protecting the rights of individuals is always important in discussions about “big data,” but these issues are particularly compelling as we explore how data and technology can help achieve health equity and alleviate health disparities. How do we assure that the power of data and data integration is not used to worsen stigmatization of individuals and groups, or contribute to profiling that may further social and economic injustice experience by vulnerable communities? New technologies are often associated with worsening of health disparities — how do we assure that profit motives are aligned to continue to promote health equity? How do we continue to put individuals and communities whose health we seek to improve foremost in the process? These are challenging issues that must be addressed, but our well-placed concern about these issues cannot lead us to dismiss the promise of precision approaches. As public health researchers it is even more important that we are at the table and engaged in these discussions.

We heard several great ideas about starting this citizen engagement process at the meeting, such as:

• Citizen juries that publicly debate and vote upon which datasets municipalities should allowed to mine at a granular level to identify potential issues within communities or to prioritize neighborhoods/areas for interventions
• Strategies for giving aggregated data summaries or other types of feedback to citizens themselves, to ensure transparency as well as to encourage activated citizens to become data scientists themselves
• Using social justice and disparities-reduction principles at the core of this work to ensure maximum impact

As a public health researchers, we feel strongly that we have expertise in aligning and partnering with communities to implement some of these strategies in the earlier phases of this work. Public health professionals should be taking a leadership role in this process to convene stakeholders and apply their approaches and methodologies to these issues. Let’s not wait to harness the power of our existing work with citizens and communities across a variety of public and academic agencies — let us instead learn the methodologies of businesses in using data to understanding our constituents better, while always upholding our ethical and social impact standards.