Unlocking California’s Health Data: What We’ve Accomplished So Far, and Next Steps

By Joel Riphagen and Ash Roughani, Health Data Ambassadors, Sacramento

As we reach the end of the six-month pilot of the California Health Data Project in Sacramento, we’ve got a number of successes under our belts. We have advanced both the public profile and the usability of the California Health and Human Services Agency’s (CHHS’s) Open Data Portal, while better connecting the Agency’s open data staff with data users. Here follows a quick tour of our achievements so far:

Sacramento Health Data Roundtable

On May 4, 2015, we held a roundtable discussion, attended by about 40 members of the local and state health and social services communities. After hearing how some local organizations are using health data in creative ways, participants broke into small groups to discuss ways in which they could and would use health data absent any constraints. This discussion produced many creative ideas, including a single portal for federal, state, and local health data, a request for more granular data from the state, an online directory of social services that could be updated by providers, and a tool to map and visualize datasets on the state portal.

National Day of Civic Hacking

On June 6–7, 2015, we helped organize our local National Day of Civic Hacking event, in partnership with Health 2.0, Helping Consumers and Policymakers Marshal the State of California’s Health Data Code-A-Thon. With support from the California HealthCare Foundation (CHCF), the event attracted civic technologists from throughout Northern California and challenged them to develop apps and data visualizations that utilized open CHHS data with $25,000 in cash prizes awarded.

Lessons from our Effort to Crowdsource Social Services Data

Based on the feedback we solicited through our survey instruments and the conversations at the Sacramento Health Data Roundtable, we discovered significant interest among stakeholders in the development of a tool to provide more robust and current data about social service providers in the region. Because our mandate was to develop a tool that could be deployed statewide and also leveraged the CHHS data portal, we developed a conceptual model that would enable local social service providers to publish data about their services to the portal (in contrast to exclusively consuming data from the portal). After conversations with stakeholders and soliciting feedback via GitHub, we ultimately decided that this effort was too ambitious for the scope of our project. While worth pursuing, an effort of this magnitude will require a coordinated, statewide strategy to solicit feedback from a variety of stakeholders over the course of at least a year.

Asthma Data Visualization Product Development

Based on subsequent discussions with local health data and CHHS stakeholders, along with a series of surveys, we reached consensus on developing a website that visualizes one of the 39 Let’s Get Healthy California (LGHC) indicators; specifically, emergency department visits for asthma by county and zip code. Users of the website will be able to download raw indicator data, manipulate geographical displays, and obtain other contextual information. This project will demonstrate best practices for effective communication through data visualization, as well as piloting an agile development process with CHHS.

Our goals for this project are as much about piloting and documenting an iterative, agile software development process as they are about the end product. We will also publish the source code on GitHub and have made our project tracking system publicly available so that any stakeholder can transparently see which features we are developing at any point in time.

Demand Driven Open Data

At the March 2015 Health & Human Services Open DataFest we learned about a pilot project at federal level (HHS), Demand-Driven Open Data (DDOD). DDOD is a framework of tools and methodologies to provide a systematic, ongoing and transparent mechanism for data consumers to communicate to public data owners what data are most valuable. We’re exploring how we might deploy DDOD in California as a tool to leverage the role of Local Health Data Ambassadors as an integral part of the open data feedback loop. For example, ambassadors and the team at CHHS could jointly refine and propose use cases based on the feedback ambassadors are receiving from local stakeholders. The goal of a DDOD platform would be to ensure that all of the feedback we’re collecting at the local level is recorded, posted, organized, and collaboratively clarified/refined within a persistent framework that enables use cases to be tracked as they become actionable.

Media Coverage

Our work has received significant media coverage, including:

• Unlocking Value in Health By Freeing Data
• Sacramento Codeathon Takes Big Step Toward Unlocking Value in State Health Data
• Building a User-Centric California Government through Demand-Driven Open Data
• Health data hackathon drawing a crowd
• California Plans Next Moves for Open Data

What’s Next?

We’re excited as we enter the next phase of our local ambassador work. We’ll soon reconvene the Sacramento Health Data Roundtable, deploy new products, and continue to document our work. Thanks to all of our local and CHHS stakeholders who have engaged with us, and especially CHCF for supporting this important work.