Know Before You Go: Challenges at the Intersection of Civic Tech & Public Health
The civic technology community are “helpers,” the type of people you want with you in an emergency. They’re people who intervene to prevent an emergency. Sitting here in Seattle, the COVID-19 Pandemic feels like the beginning of a months-long emergency. Many reputable news stories have been churned out, but clear data on the COVID-19 crisis is as rare as toilet paper at Costco. The pandemic has led me to reflect on lessons learned from working with open data standards in partnership with public health agencies.
I count myself as part of the civic technology community at the rare intersection of public health, civic technology, and open data. I’ve spent the last seven years working with public and environmental health agencies across the US. My career pivoted in the wake of a terrifying personal experience with the second E. Coli outbreak in my life in 2013. I became a food safety advocate and served on local, state, and national public health committees. Later, I developed the 2.0 of the LIVES inspection data standard as a consultant to an open data company. At an early age (when my family was in the ’93 Jack in the Box E. Coli outbreak), I learned how economic, public relations, and risk management angles of outbreaks can wreak consequences on the vulnerable. In the last year, I produced an ecosystem scan of over 1,000 environmental health agencies (frequently overlaps with “public health” agencies) in the US and a niche of their inspections. Through key-informant interviews, days spent at industry conferences, and learning directly from epidemiologists, I’ve developed a unique lens on how the civic technology community could assist Americans and the public health field.
I’m honored to work with public health professionals. I’ve learned so much from them and respect the work they do to protect all of us in a myriad of ways. They’re all working incredibly hard right now and this blog post isn’t discounting any of their brilliant work or leadership.
Like any field, they have their own unique challenges around technology and information sharing. I want to flag the challenges of working within this field, so those of you in civic technology can better complement public health work.
Here are my top six recommendations for civic technologists working to assist in the COVID-19 Pandemic.
Note: these recommendations are mostly from an American context, but I’ve seen some of them within European health agencies, too.
There are over 3,000 local environmental and public health agencies in America. Like many of America’s local government agencies, they function as independent offices with their own interpretation of best practices and standards from international, federal, and state levels. I’ve seen wide variability in their practices, and many states — including some of our populous — allow these local agencies to set their own practices and policy. If you are looking to complete a program at scale quickly, I suggest looking for statewide public health or environmental health agencies that staff local offices from the state level and implement a high level of consistency across their state. They’ll have the largest and most capable IT teams as well as highly skilled public health teams. Separate civic tech teams will need to triage local governments or states which maintain a local control model, prioritizing COVID-19 hot spots and the surrounding jurisdictions, quickly building an ecosystem scan of how data is being reported up to their state agency from the locals.
With over 3,000 public health jurisdictions comes the challenge federal agencies face every day: they can’t get data out of the locals, and when they do, it requires significant work to normalize the data and make use of it. Simple “how many people have COVID-19” data is minor to the type of information which helps public health officials get ahead of a problem (or for the public to make informed decisions): they need data that provides context for each data point in the pandemic. However, local jurisdictions are ill-prepared to provide stakeholders contextual information in machine-readable formats. In an ecosystem scan of over 1,000 environmental health jurisdictions that all inspect a particular type of facility, I found that under .06% provided that information in open data. About 10 to 15% of the population maintained paper records. Worse, I estimate over 50% had a third-party database tool which, in their contract, stripped the agency of ownership of their own data. Most couldn’t export their data, even if they wanted to. This means they’re frequently limited to sharing simple summary “reports” in spreadsheets or PDFs. I’m concerned about the current capacity for data gathering, reporting, and tracking tools. They will likely need the civic tech field’s support.
Data analysis by experts in our field will need to be leaned on. In particular, tools and skills that could help governments supplement or clean up their current tracking and reporting data. Help them gain context (accurate location data, integrate data sources from private entities, etc.) and push information from their antiquated systems and share them with stakeholders.
Assume that the public health or environmental health agency has no access to an open data portal or that their leadership has not utilized an open data portal in their jurisdiction, even at the state level. The biggest potential win for opening data across the health agency field would be for a single, multi-tenant open data platform to be provided at no cost to the public/environmental health field for the next two years. Include private sector and university labs in the multi-tenant open data portal. Management of a multi-tenant portal should be by a reputable, non-commercial organization like a research university. This would go a long way in fostering trust with the field.
The skilled transparency and public information access professionals amongst us must turn their attention to state public health agencies, governor’s offices, and federal entities like the Veteran’s Administration. We’re already seeing journalists in Seattle and Oregon lamenting the lack of state public health office transparency. This doesn’t surprise me. My personal experience interacting with public health agencies, especially when trying to get ahead of a problem, is that they tend to slow-walk information out of both an overabundance of caution and because they may want to minimize concerns of the public.
As an example, when I served on two public committees with a county (to establish new restaurant inspection transparency tools) I had my first amendment rights struck; if I wanted to stay in the room with stakeholders, I could not live-tweet the public meetings. I’ve seen select researchers have a mainline on inspection scores to help fuel the exclusive research of an ivy league professor, in part to shape their own narrative. My experiences include governments at the core of the COVID-19 response in the Pacific Northwest. I hope the urgency of the pandemic has shifted public health’s culture towards more transparency, but my experience leaves me skeptical.
Transparency advocates and public disclosure experts: we need you now. We needed you last week. And we need you to decide who will become regional experts, litigators and information gatherers, coordinating across civil society organizations.
Philanthropy in our field will need to pivot elements of their funding strategy. Prioritize funding technology that supplements government reporting and tracking technology. Build capacity for public health transparency and accountability efforts. Funds are needed to provide the necessary research, legal, and frankly, personal persuasion work that it will take to wrestle crucial information from a range of jurisdictions. Use your networks, influence, and funding to bring private and educational institutions (like testing labs and manufacturers) into public tracking networks. Funds are needed to both hold public health accountable and assist them in their work.
If you need more public health advising and context, look to hiring public health experts who work within our public and private universities. Many of them have decades of experience in public institutions and can lend valuable insights while not pulling them away from jobs in public health agencies.
I hope these lessons from my work in civic technology and public health provided insights into the challenges and opportunities ahead. America, and the world, need your skills and resources right now. And, to public health folks reading this — thank you for the life-saving work you do every day.
