chhs open datafest - 3.14.16 - day one morning sessions
TRANSCRIPT
Join the conversation now: #HHSDataFest
Welcome, Purpose, and Agenda OverviewMichael Wilkening, Undersecretary, California Health and Human Services Agency Andy Krackov, Associate Director for External Engagement, The California HealthCare Foundation Daniel Stein, President, Stewards of Change Institute
Open DataFest Goals• Share progress, celebrate accomplishments, make new connections• Connect Social Determinants of Health and Wellness with Let’s Get Healthy California
and Open Data• Showcase innovative local, state, and national programs• Explore the intersection between academic research and open data• Bring together various agencies’ involved with open data to learn from one another
and avoid building more silo• Prepare recommendations to help shape California’s ongoing open data vision and
operations• Introduce concepts, tools and methods to advance information sharing and
interoperability
Where Did We Start? Where Are We Today?
Data prison Lots of data are now ‘free’
No statewide HHS Portal New CHHSA Portal with 164 data sets from all 12 departments
No regional / community based events
Multiple efforts in counties and cities across the state
No state-wide convenings HHS Open DataFest III
No data innovation focus New innovation office
Lagging the US Leading the US
Monday’s Open DataFest AgendaIntroductions
Overview of Open Data Interactive: “Questions of Consequence”
Break Exploring the Intersection between Open Data and Academic Research Data
Lunch (Affinity Table Discussion)Social Determinants - “Let’s Get Healthy California” - Innovation Challenge Winners
Interactive: The Data Hunt Break
Employing Cognitive Learning to Assist Decision Making and Program Effectiveness Achieving Community Health and Creating Person-Centered Services in San Diego
Review and WrapReception
Instructions: Questions of Consequence Purpose: To develop a rich understanding of what the people you interview think and feel about the issues raised by your question.
Method:1. Choose a partner and introduce yourselves. (OK if you have a trio)2. You and your partner each have a unique question (#1 or #2). 3. One of you will interview the other for 8 minutes, and then switch roles. 4. After both interviews are finished, table participants will discuss both questions. 5. Whole room debrief.
Join the conversation now: #HHSDataFest
California’s HHS Open Data Overview, Updates and TrendsKevin Merritt, Founder & CEO, Socrata Stuart Drown, Deputy Secretary for Innovation and Accountability, Government Operations AgencyMichael Wilkening, Undersecretary, California Health and Human Services Agency
• A PRIMER ON OPEN DATA
Kevin MerrittCEO
Socrata
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Who Uses Open Data?
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• What are the major stakeholder groups interested in government data?
Ordinary but Interested Citizens
Researchers, Scientists, Analysts, Economists & Journalists
Developers & Entrepreneurs
Government Employees!
Data Fuels the 21st Century Digital Government
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• By becoming data-driven, governments transform themselves
Data-Driven Government
Improve Transparency & Accountability
Build & PromotePublic Trust
Citizen Engagement & Empowerment
Improve Operational Efficiency
Support Fact-Based Decision Making
Promote Economic Development
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• “The key to progress for digital government maturity
is a singular focus on the exclusive use of data in
designing and delivering government policies and
services.”
Gartner, 2015
20What Does Open Data Look Like?
21Data Can Build Trust & Foster Community
Open Data Solves Real & Poignant Problems22
Shedding Light on Pharmaceutical Influence23
Bring Data to Where Consumers Already Are24
Let Others Extend the Work of Your Data 25
(Raw Data & APIs) Ascel Bio Built the App
Open Data Pilot Open Data Fest IIIMarch 14, 2016
Sacramento Convention Center
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• Pilot Goals1. Create an efficient, consolidated, and reliable infrastructure for
data.ca.gov2. Build capacity in state workforce3. Make use of CalCloud to reduce cost and reach out to local
governments
• Objectives
1. Create greater efficiencies for program operations. 2. Encourage inter-agency data-sharing; Reduce duplication of
information.3. Enable data-based decision-making.4. Better serve Californians. Provide data more quickly and in a more
user-friendly format.5. Stimulate innovation.
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Pilot Goals & Objectives
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Surveyed 88 entities
756 “public” data sets reported
91 different formats
Data Inventory- May 2014
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Sustainability Innovation Challenge - DGS HeadquartersOctober 24-25, 2015; Go to greengov.data.ca.gov
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• 11 data sets published• 14 open source apps• Introduced government to new population –potential hires• Collaboration under tight deadline built mutual respect/brand• Learned to flex new muscles = morale boost• Implementing winning apps required learning new skills• Open source Innovation “sandbox”
Innovation Challenge Outcomes
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Open Data Pilot Timeline
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• Pilot• Platform• Standards + Governance• Federation• Automation
• Collaboration• Within government• Civic engagement• Targeted deeper access
• Cultural Change• Siloed to Open• Deeper analysis• Data-driven decision-making
More than a platform
Join the conversation now: #HHSDataFest
Interactive Activity: How Open Data Can Be Used to Advance Data-Literacy and Decision MakingFacilitators: Stewards of Change Institute Team
Join the conversation now: #HHSDataFest
Exploring the Intersection between Academic Research and Open Data to Improve Outcomes and Measure Performance; Lessons Learned from Stanford University EventMark Cullen, MD, Director, Stanford University Center for Population Health Sciences
Panelists:Phil Leaf, Ph.D., Professor, Johns Hopkins Bloomberg School of Public Health, School of Medicine, School of Education, and School of Arts and SciencesAenor Sawyer, Associate Director, Strategic Relations, Center for Digital Health Innovation UCSF; Director UCSF Skeletal Health ServiceAnne Neville, Director, California Research Bureau, California State Erika Martin, Ph.D., MPH, Senior Fellow and Director of Health Policy Studies, Rockefeller Institute of Government and Associate Professor, Department of Public Administration & Policy, State University of New York
Responder:Regan Foust, Director, Strategic Partnerships, Research Scientist, Children’s Data Network
Open Data Are ValuableJonathan Gross, BCHD
• Open data are sometimes mistaken as not being valuable
• However, the data are made public because they are valuable!
• Federal, state, and local governments are making more data available than ever before to help solve a wide array of problems.
Baltimore: 19-Year Life Expectancy Gap
www.baltimorecity.gov/healthmaps Data at BNIA: http://bniajfi.org/
Health Insurance Estimates• Tan and red census
tracks are areas with low health insurance rates
• The markers are hospitals and FQHCs
Data source: Census/American Community Survey (ACS)and Maryland State Data Center: http://www.mdp.state.md.us/msdc/S7_ACS.shtml
www.baltimorecity.gov/healthmaps
Hospital’s Proximity to Firearm Violence
Medicare: Open Opioid Prescription DataProvider-level data are also available
https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/Medicare-Provider-Charge-Data/OpioidMap.html
Be Open Data Savvy!• Start early• Be BOLD!• Open data is valuable• Search, search, search!• Find a comparison group/area• Use simple tables and colorful graphs• Work in teams• Don’t be afraid to start over
Health Dept. Map Gallery• Baltimore City
• Social determinants of health• Health insurance at census tract level• Homicide epidemic – spatial patterns• Shooting incident animation
www.baltimorecity.gov/healthmaps
• More to come…• At least one map per division• Asset mapping
• Mid/Long-term possibilities…• Health atlas• Crowdsourced, volunteered geographic
information, or social media
Youth Health Index across 55 Baltimore City Community Statistical Areas
ACADEMIC RESEARCH
OPEN DATA
@CAStateLibrary
@annenevilleCalifornia State Library
Anne Neville
MARCH 14, 2016
The Case: The National Broadband Map (2009-2015)(You are correct. This is not health-related)
• First national + open dataset of broadband availability
• Really granular – census block or road segment
• Big: 25M new records every six months
• New opportunity to study broadband access in the US
• Stakeholders: policymakers, advocates, researchers, public/private sector analysts, journalists, consumers
Stakeholder Outreach: Researchers
Successful event at National Press Club one month after launch of public data
Seven research groups: Georgia Tech/U. Toronto/ Northwestern, U. Texas, Joint Center, Murray State, Harvard, Drexel/Mich State Phoenix Center
Federal Register notice, advanced access to data for institutions with research plans
Government agency (NTIA) has existing relationship with researchers
What Happened Next? • Dedicated space for researchers on project wiki
• Outcome: Not used
• Created a Researcher Working Group
• Outcome: Initial interest, not sustained
• Considered grants to fund independent research
• Outcome: Not created
The Plan Didn’t WorkWhat Happened?
Coordinating Research Activities
• Limited staff
• No initial external funding for research on this topic
• Limited funding - would research grants provide most usefulness?
Research-Related Activities
• Regularly answered questions from researchers about metadata, data collection methods
• Reviewers for academic papers
What’s Helpful for Gov’T? What we hope you’ll say when you call
Improving Communication• If the data is problematic, let’s talk
• We appreciate a heads up, if possible
• Specific feedback leads to specific results
Contact Info: @CAStateLibrary
@anneneville
Integrating Public Health Researchers into the Open Data Ecosystem
Erika Martin, PhD MPHRockefeller Institute of Government & University at Albany
California Health and Human Services Open DataFest IIISacramento, CAMarch 14, 2016
This work was supported by the Robert Wood Johnson Foundation’s Public Health Services and Systems Research Program (grant ID #71597)
Project overview Limited guidance on tailoring open data to different users
Open data are only valuable when used
How can we improve the quality and usability of data for public health research and practice? Systematic review of health data offerings in three open data
portals (HealthData.gov, Health Data NY, NYC OpenData) Key informant interviews with practitioners publishing open health
data to understand challenges and opportunities Pilot open data linkage project to assess the feasibility of using
open data for academic research
Data characteristics(e.g. missing data, timeframe, data collection procedures, database design, data elements, population)
Data user characteristics(e.g. intended use, expertise, skills, tasks performed)
Platform promotion and user training(e.g. value propositions, financial resources, political support, information technology, regulations and data stewardship, legal interpretation of confidentiality protections)
Rockefeller Institute of Government 55
Intrinsic data quality(e.g. accuracy, reputation, confidentiality, reliability, validity, objectivity)
Contextual data quality(e.g. appropriate amount, completeness, concise representation, ease of manipulation, relevance)
Platform usability(e.g. accessibility, functionality, learnability, representational consistency, visibility)
Metadata quality(e.g. accuracy, completeness, consistency, interpretability, provenance)
Short-term impacts(e.g. availability of health information, data-driven population health planning and monitoring, mHealth development, consumer empowerment, research grants and studies)
Long-term impacts(e.g. improved population and patient health, enhanced decision-making, higher quality/value medical and public health services)
CHARACTERISTICS OF DATA USE
DATA QUALITY AND USABILITY
DIRECT AND INDIRECT HEALTH IMPACTS
Systematic review of open data offerings(HealthData.gov, Health Data NY, NYC OpenData)
Most data offerings not designed for health research Only one-quarter of open data offerings are structured datasets Most offerings do not contain demographic variables
Variation in quality and usability across platforms Health Data NY scored highest on intrinsic data quality, contextual data quality,
and adherence to Dublin Core metadata standards
Gaps in meeting “open data” deployment criteria All offerings met basic “web availability” open data standards Fewer met higher standards of being hyperlinked to other data to provide
context
Platforms enable users to discover and access data in novel ways, with areas for improvement
Technical problems limit functionality, low web visibility, HealthData.gov is primarily a search engine
Key informant interviews(Policymakers and practitioners in New York and federal agencies)
Wide range of perceived benefits Internal benefits: improved data/metadata quality, more efficient public health
operations (e.g. data silos, FOIA requests) External benefits: health literacy, data-driven improvements in healthcare delivery
and built environment, community empowerment, improved data quality, timeliness, and usefulness
New users bring innovative ideas
Numerous challenges to releasing data Critical challenges: resources, cultural resistance, legal and regulatory issues, and
data/metadata quality Other challenges: technical issues with legacy systems and data platforms,
knowledge gaps, addressing needs of diverse end-users
General optimism that open data movement will continue Yet success depends on sustained leadership, resources, cultural changes,
promoting the use of data, and establishing governance
Pilot data linkage project(Mapping childhood obesity to the built environment in New York)
Many datasets readily available for public health research Can use data creatively to evaluate multiple dimensions of the built environment
(e.g. using restaurant inspections data for fast food availability) Can synthesize data from different domains (health, agriculture, education)
Challenges consistent with findings from other study phases Lack of standard definitions for data elements severely constrains interoperability
and ability to merge by geographic identifier Incomplete metadata, e.g. missing codebooks Data quality, e.g. incomplete addresses, inconsistent location descriptions Data timeliness High level of geographic aggregation limits value Some data not easily discoverable (or available) in open data platforms Data not yet 5-star, e.g. downloadable in multiple non-proprietary formats and
with links to provide context Limited usability, e.g. advanced statistical skills required to prepare data
Questions? Contact: [email protected]
For additional project information: www.publichealthsystems.org/erika-martin-phd-mph-0
For materials from fall 2013 workshop on open health data in New York and links to open data resources:
www.rockinst.org/ohdoo
Bibliography Martin EG, Helbig N, Shah NR. Liberating data to transform healthcare:
New York’s open data experience. JAMA 2014; 311(24): 2481-2481. Martin EG, Helbig N, Birkhead GS. Opening health data: what do
researchers want? Early experiences with New York’s open health data portal. J Public Health Manag Pract 2015; 21(5): e1-7.
Martin EG, Law J, Ran W, Helbig N, Birkhead GS. Evaluating the quality and usability of open data for public health research: a systematic review of data offerings on three open data platforms. J Public Health Manag Pract. [In press; online ahead of print]
Martin EG, Begany GM. Opening government health data to the public: benefits, challenges, and lessons learned from early innovators. [Under review]
Dwicaksono A, Brisette I, Birkhead GS, Bozlak CT, Martin EG. Evaluating the contribution of the built environment to obesity among New York State students. [Working paper.]