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United States

Open Data for Public Health (US0110)

Overview

At-a-Glance

Action Plan: United States Action Plan 2019-2021

Action Plan Cycle: 2019

Status: Active

Institutions

Lead Institution: NA

Support Institution(s): NA

Policy Areas

Access to Information, E-Government, Health, Open Data, Public Participation, Public Service Delivery, Science & Technology

IRM Review

IRM Report: United States Design Report 2019-2021

Starred: Pending IRM Review

Early Results: Pending IRM Review

Design i

Verifiable: Yes

Relevant to OGP Values: Access to Information , Civic Participation , Technology

Potential Impact:

Implementation i

Completion: Pending IRM Review

Description

Using Open Data to Fuel Innovation to Improve Public Health Based on extensive feedback from healthcare and technology stakeholders, the Federal Government will leverage data to foster the next generation of healthcare innovation. - Data-Driven Innovation for the Opioid Crisis. The HHS Office of the Chief Technology Officer (CTO) will host a series of co-creation events to discover insights from a comprehensive set of Federal, State, and private datasets related to the opioid crisis. - Data-Driven Innovation for Lyme and Tick-Borne Diseases. In response to online petitions and public demand that the Federal Government prioritize Lyme and tick-borne diseases, the HHS Office of the Chief Technology Officer (CTO) will launch a new public-private collaborative — a Lyme and Tick-Borne Disease Innovation Accelerator. Lyme disease sickens more than 300,000 Americans every year and is the fastest-growing vector-borne disease in the United States, which drains tens of billions of dollars from the economy. To address this multi-faceted challenge, HHS will host a series of “Lyme Innovation” listening sessions, roundtables, and events designed to harness the power of the crowd and leverage emerging technologies in order to co-create solutions with patients and practitioners as partners. - Data-Driven Innovation for Value-Based Healthcare. The HHS Office of the Chief Technology Officer (CTO) will launch a series of “open innovation” prize challenges to improve value-based healthcare with Federal open data, patient-powered research, open science, open source, and open innovation (e.g., crowdsourcing, citizen science, and innovative public-private partnerships).

IRM Midterm Status Summary

6. Using Open Data to Fuel Innovation to Improve Public Health

Main Objective

“Leverage data to foster the next generation of healthcare innovation.”

Milestones

“Host a series of co-creation events to discover insights from a comprehensive set of Federal, State, and private datasets related to the opioid crisis.”

“Launch a new public-private collaborative — a Lyme and Tick-Borne Disease Innovation Accelerator.”

“Launch a series of “open innovation” prize challenges to improve value-based healthcare.”

Editorial Note: For the complete text of this commitment, please see the United States’ action plan at: https://open.usa.gov/assets/files/NAP4-fourth-open-government-national-action-plan.pdf.

IRM Design Report Assessment

Verifiable:

Yes

Relevant:

Yes

Access to information; civic participation; technology and innovation for transparency and accountability

Potential impact:

Minor

Commitment analysis

This commitment innovatively uses open data to improve public health via three milestones: hosting events to examine government- and private-sector data on the opioid crisis; launching a public-private Lyme and Tick-Borne Disease Innovation Accelerator and hosting related activities; and launching innovation challenges to improve value-based healthcare. [65] These will be led by the Department of Health and Human Services (HHS).

Regarding the first milestone, HHS declared a public health emergency in October 2017 to address the growing number of deaths from opioids, with more than 91 Americans dying from opioid overdoses daily; 64,000 Americans died from drug overdoses in 2016, up from 52,404 Americans who died in 2015. [66] The U.S. Centers for Disease Control and Prevention’s third Annual Surveillance Report of Drug-Related Risks and Outcomes from 2019 notes an ongoing increase in deaths through 2017, with 70,237 deaths and a marked increase in deaths involving non-methadone synthetic opioids of 42.5% from 2016 to 2017. [67] HHS’ declaration of a public health emergency followed the release of its five-point “Opioid Strategy” [68] to address the crisis, with “Point 2” committing HHS to support “more timely, specific public health data and reporting, including through accelerating CDC’s reporting of drug overdose data.” [69]

Lyme and tick-borne diseases have similarly been increasing. Lyme disease “is the fastest growing vector-borne disease in the United States,” infecting more than 300,000 Americans annually. [70] The HHS’ Tick-Borne Disease Working Group’s 2018 Report to Congress [71] notes the number of counties with high incidence of Lyme disease has increased by 300% in Northeastern states and 250% in North-Central states, entailing $1.3 billion in direct medical costs annually, and a “potential $50−$100 billion problem for the United States” when broader costs are considered. The second milestone will reduce disease incidence and associated costs via the proposed accelerator.

Finally, regarding the third milestone, HHS’ open innovation activities “provide the Department with expert knowledge of alternative tools available to bring opportunities to problem solvers everywhere,” specifically via the HHS IDEA Lab’s Open Innovation service. [72] Prize challenges are one such tool, with the goal of accelerating solution development and broadening the number of individuals and companies working on solutions to health-related problems and others. HHS has launched over 170 challenges and awarded $35 million in cash prizes since 2011. [73] Upon taking office, HHS Secretary Alex Azar II “identified the value-based transformation of our entire healthcare system as one of the top four priorities for [HHS]” [74] with value-based healthcare defined as payment of medical providers based on achieved outcomes rather than services provided. [75] The commitment’s proposed prize challenges should move the HHS in this direction.

The commitment is relevant to the OGP values of access to information due to the co-creation, data-related, and information-sharing events envisioned under the first and second milestones. The commitment is similarly relevant to civic participation on these grounds, as well as via the third milestone’s open innovation challenges which are open to public participation. All milestones are broadly relevant for the OGP value of technology and innovation for access to Information.

The IRM researcher assesses the commitment as having a minor potential impact. The first milestone’s co-creation workshops are relatively narrow given the broader five-point Opioid Strategy, and range of ongoing data-related activities in this area. These include the Centers for Disease Control and Prevention’s awarding of millions of dollars in funding to 44 states and the District of Columbia to support data collection and usage on opioid mortality, [76] an HHS-led Opioid Code-a-Thon in 2017, [77] and the Centers for Medicare and Medicaid Services’ release of opioid-prescribing mapping tools. [78] The commitment’s proposed co-creation workshops therefore are a minor innovation.

The proposed Lyme and Tick-Borne Disease Innovation Accelerator and related activities are similarly expected to have a minor impact. The initiative, launched three months prior to NAP4, precludes it from a potential impact assessment. Initiatives with clear potential impact include: listening session activities; a 14-week tech-sprint that leverages open federal datasets to develop digital health tools focused on Lyme and tick-borne diseases; and a previously hosted Lyme Innovation Roundtable held on 4 December 2018 for “identify[ing] high-value datasets and available resources” and exploring public-private partnerships. [79] HHS envisions the proposed listening sessions as a means of “hear[ing] feedback from individual stakeholders,” but does not specify a clear and measurable output. [80] The sessions’ potential impact would therefore be assessed as minor, were the initiative’s launch to have occurred after NAP4’s publication. [81]

Finally, HHS’ proposed prize challenges for value-based healthcare are a relatively minor component of the HHS’s far broader ongoing activities with clearly identifiable outputs in value-based healthcare. These activities include HHS’ proposed new rules to enhance patient access to medical information by mandating that electronic health information be provided at no cost, which is “essential to building a healthcare system that pays for value rather than procedures.” [82] Another ongoing HHS activity is the Emergency Triage, Treat, and Transport Model which allows “qualified healthcare professionals to deliver treatment in place” and offers “alternative destination sites…to provide care for Medicare beneficiaries following a [911] medical emergency,” a step forward for value-based healthcare. [83] Given these activities, the proposed prize challenges, with uncertain scope and value, do not have more than a substantial potential impact.

[65] Government of the United States, The Open Government Partnership: Fourth Open Government National Action Plan for the United States of America (OGP, Feb. 2019), 4, https://open.usa.gov/assets/files/NAP4-fourth-open-government-national-action-plan.pdf.
[66] U.S. Dept. of Health and Human Services, “HHS Acting Secretary Declares Public Health Emergency to Address National Opioid Crisis” (26 Oct. 2017), https://www.hhs.gov/about/news/2017/10/26/hhs-acting-secretary-declares-public-health-emergency-address-national-opioid-crisis.html.
[67] Centers for Disease Control and Prevention, National Center for Injury Prevention and Control, Annual Surveillance Report of Drug-Related Risks and Outcomes (1 Nov. 2019), 7−9, https://www.cdc.gov/drugoverdose/pdf/pubs/2019-cdc-drug-surveillance-report.pdf.
[68] U.S. Dept. of Health and Human Services, “5-Point Strategy To Combat the Opioid Crisis” (30 August 2020), https://www.hhs.gov/opioids/about-the-epidemic/hhs-response/index.html; U.S. Dept. of Health and Human Services, Strategy to Combat Opioid Abuse, Misuse, and Overdose (Nov. 2018), https://www.hhs.gov/opioids/sites/default/files/2018-09/opioid-fivepoint-strategy-20180917-508compliant.pdf.
[69] U.S. Dept. of Health and Human Services, “Better Data” (1 Sept. 2020), https://www.hhs.gov/opioids/about-the-epidemic/hhs-response/better-data/index.html.
[70] Government of the United States, Fourth Open Government National Action Plan at 4.
[71] U.S. Dept. Health and Human Services, Office of the Assistant Secretary for Health, Tick-Borne Disease Working Group: 2018 Report to Congress (2018), 1, https://www.hhs.gov/sites/default/files/tbdwg-report-to-congress-2018.pdf.
[72] U.S. Dept. of Health and Human Services Chief Technology Officer, “About Open Innovation” (27 Sept. 2018), https://www.hhs.gov/cto/initiatives/open-innovation/about/index.html.
[73] Id.
[74] Alex M. Azar II, “Value-Based Transformation of America’s Healthcare System” (U.S. Dept. of Health and Human Services, 8 Mar. 2018), https://www.hhs.gov/about/leadership/secretary/speeches/2018-speeches/value-based-transformation-of-americas-healthcare-system.html.
[75] Assistant Secretary for Public Affairs, “Secretary Priorities” (U.S. Dept. of Health and Human Services, 23 Jul. 2018), https://www.hhs.gov/about/leadership/secretary/priorities/index.html#value-based-healthcare.
[76] U.S. Centers for Disease Control and Prevention, “Enhanced State Opioid Overdose Surveillance” (16 Jul. 2019), https://www.cdc.gov/drugoverdose/foa/state-opioid-mm.html.
[77] HHS Office of the Chief Technology Officer, “HHS Opioid Code-a-Thon” (3 Jul. 2018), https://www.hhs.gov/challenges/code-a-thon/index.html.
[78] U.S. Centers for Medicare & Medicaid Services, “CMS Opioid Prescribing” (1 May 2019), https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Trends-and-Reports/Medicare-Provider-Charge-Data/OpioidMap. For a selection of related activities, see U.S. Dept. of Health and Human Services “Better Data” (1 Sept. 2020), https://www.hhs.gov/opioids/about-the-epidemic/hhs-response/better-data/index.html.
[79] Kristen Honey and Ed Simcox (HHS Chief Technology Officer), “The HHS Office of the CTO announces a ‘Lyme Innovation’ initiative” (HHS, 20 Nov. 2018), https://www.hhs.gov/cto/blog/2018/11/20/the-hhs-office-of-the-cto-announces-a-lyme-innovation-initiative.html.
[80] Id.
[81] Lorraine Johnson (CEO of LymeDisease.org and Principal Investigator of MyLymeData) notes a related concern of public-private partnerships: “simply opening data may subject Lyme patients as a community to greater stigma if that data is not used in partnership with the Lyme community-think community participatory research.” She implies that broader attention is needed for the privacy challenges of leveraging public-private partnerships to facilitate Lyme disease data access and availability.
[82] U.S. Dept. of Health and Human Services, “HHS Proposes New Rules to Improve the Interoperability of Electronic Health Information” (11 Feb. 2019), https://www.hhs.gov/about/news/2019/02/11/hhs-proposes-new-rules-improve-interoperability-electronic-health-information.html.
[83] Centers for Medicare & Medical Services, “Emergency Triage, Treat, and Transport Model,” (11 Oct. 2019), https://innovation.cms.gov/innovation-models/et3

Commitments

  1. Federal Data Strategy

    US0105, 2019, E-Government

  2. Grants Accountability

    US0106, 2019, E-Government

  3. Public Access to Federally Funded Research

    US0107, 2019, Access to Information

  4. Workforce Data Standards

    US0108, 2019, E-Government

  5. Chief Data Officers

    US0109, 2019, Access to Information

  6. Open Data for Public Health

    US0110, 2019, Access to Information

  7. Enterprise Objective

    US0111, 2019, Capacity Building

  8. Developing Future Action Plans

    US0112, 2019, Public Participation

  9. Reconstitution of the USA.gov

    US0053, 2015, E-Government

  10. Accessibility of Government Information Online

    US0054, 2015, Marginalized Communities

  11. Access to Educational Resources

    US0055, 2015, Access to Information

  12. Public Listing of Every Address in the US

    US0056, 2015, Access to Information

  13. Informed Decisions About Higher Education.

    US0057, 2015, Access to Information

  14. New Authentication Tools to Protect Individual Privacy and Ensure That Personal Records Go Only to the Intended Recipients.

    US0058, 2015,

  15. Transparency of Open311

    US0059, 2015, E-Government

  16. Support Medicine Research Throught Opening up Relevant Data of the Field

    US0060, 2015, Access to Information

  17. Access to Workforce Data

    US0061, 2015, Access to Information

  18. Using Evidence and Concrete Data to Improve Public Service Delivery

    US0062, 2015, Capacity Building

  19. Expand Use of the Federal Infrastructure Permitting Dashboard

    US0063, 2015,

  20. Consolidation of Import and Export Systems

    US0064, 2015, E-Government

  21. Improving Government Records

    US0065, 2015, Access to Information

  22. Starred commitment Ammendments to FOIA

    US0066, 2015, Access to Information

  23. Streamline the Declassification Process

    US0067, 2015, Capacity Building

  24. Implement the Controlled Unclassified Information Program

    US0068, 2015, Access to Information

  25. Transparency of Privacy Programs and Practices

    US0069, 2015, Capacity Building

  26. Transparency of Federal Use of Investigative Technologies

    US0070, 2015, E-Government

  27. Increase Transparency of the Intelligence Community

    US0071, 2015, Access to Information

  28. Starred commitment Open Science Through Open Data

    US0072, 2015, Access to Information

  29. Open Data Portal

    US0073, 2015, E-Government

  30. Increase Transparency of Trade Policy and Negotiations

    US0074, 2015, E-Government

  31. Develop a Machine Readable Government Organizational Chart

    US0075, 2015, Access to Information

  32. Improving Public Participation

    US0076, 2015, Public Participation

  33. Expand Public Participation in the Development of Regulations

    US0077, 2015, Public Participation

  34. Civic Engagement in Decision-Making Processes

    US0078, 2015, Public Participation

  35. Open Mapping

    US0079, 2015, Access to Information

  36. Tracking OGP Implementation

    US0080, 2015, Public Participation

  37. Strengthening Whistleblower Protection

    US0081, 2015, Anti-Corruption

  38. Transparency of Legal Entities

    US0082, 2015, Anti-Corruption

  39. Extractive Industries Transparency

    US0083, 2015, Anti-Corruption

  40. Spending Transparency

    US0084, 2015, Access to Information

  41. Enhance the Use of U.S. Foreign Assistance Information

    US0085, 2015, Aid

  42. Participatory Budgets and Responsive Spending

    US0086, 2015, Fiscal Openness

  43. Expand Access to Justice to Promote Federal Programs

    US0087, 2015, Access to Justice

  44. Starred commitment Build Safer Communities with Police Open Data

    US0088, 2015, Access to Information

  45. Open Federal Data to Benefit Local Communities

    US0089, 2015, Access to Information

  46. Support the Municipal Data Network

    US0090, 2015, Access to Information

  47. Foster Data Ecosystems

    US0091, 2015, Capacity Building

  48. Extend Digital, Data-Driven Government to Federal Government’S Support for Communities

    US0092, 2015, Capacity Building

  49. Promote Implementation of SDGs

    US0093, 2015, Access to Information

  50. Starred commitment Promote Open Climate Data

    US0094, 2015, Access to Information

  51. Air Quality Data Available

    US0095, 2015, Access to Information

  52. Promote Food Security and Data Sharing for Agriculture and Nutrition

    US0096, 2015, Access to Information

  53. Promote Data Sharing About Global Preparedness for Epidemic Threats

    US0097, 2015, Capacity Building

  54. Promote Global Interconnectivity

    US0098, 2015, Aid

  55. Open Contracting

    US0099, 2015, Access to Information

  56. Harness the Data Revolution for Sustainable Development

    US0100, 2015, Access to Information

  57. Open Government to Support Global Sustainable Development

    US0101, 2015, Anti-Corruption

  58. Open Collaboration Onf the Arctic

    US0102, 2015, Environment and Climate

  59. Support Capacity Building for Extractives Transparency

    US0103, 2015, Anti-Corruption

  60. Support Responsible Investment and Business Practices for Companies

    US0104, 2015, Private Sector

  61. Improve Public Participation in Government

    US0027, 2013, Capacity Building

  62. Modernize Management of Government Records

    US0028, 2013, Records Management

  63. Modernize the Freedom of Information Act

    US0029, 2013, Access to Information

  64. Transform the Security Classification System

    US0030, 2013, Records Management

  65. Implement the Controlled Unclassified Information Program

    US0031, 2013, Security & Public Safety

  66. Increase Transparency of Foreign Intelligence Surveillance Activities

    US0032, 2013, Data Stewardship and Privacy

  67. Make Privacy Compliance Information More Accessible

    US0033, 2013, E-Government

  68. Support and Improve Agency Implementation of Open Government Plans

    US0034, 2013,

  69. Strengthen and Expand Whistleblower Protections for Government Personnel

    US0035, 2013, Anti-Corruption

  70. Increase Transparency of Legal Entities Formed in the United States

    US0036, 2013, Fiscal Openness

  71. Starred commitment Implement the Extractive Industries Transparency Initiative

    US0037, 2013, Access to Information

  72. Make Fossil Fuel Subsidies More Transparent

    US0038, 2013, Anti-Corruption

  73. Starred commitment Increase Transparency in Spending

    US0039, 2013, Access to Information

  74. Increase Transparency of Foreign Assistance

    US0040, 2013, Aid

  75. Continue to Improve Performance.Gov

    US0041, 2013, E-Government

  76. Consolidate Import and Export Systems to Curb Corruption

    US0042, 2013, Private Sector

  77. Promote Public Participation in Community Spending Decisions

    US0043, 2013, Fiscal Openness

  78. Expand Visa Sanctions to Combat Corruption

    US0044, 2013, Anti-Corruption

  79. Further Expand Public Participation in the Development of Regulations

    US0045, 2013, Capacity Building

  80. Open Data to the Public

    US0046, 2013, Access to Information

  81. Continue to Pilot Expert Networking Platforms

    US0047, 2013, Public Participation

  82. Reform Government Websites

    US0048, 2013, E-Government

  83. Promote Innovation Through Collaboration and Harness the Ingenuity of the American Public

    US0049, 2013, Capacity Building

  84. Promote Open Education to Increase Awareness and Engagement

    US0050, 2013, E-Government

  85. Deliver Government Services More Effectively Through Information Technology

    US0051, 2013, E-Government

  86. Increase Transparency in Spending

    US0052, 2013, Access to Information

  87. Reform Records Management

    US0001, 2011, Public Participation

  88. Lead a Multi-Agency Effort

    US0002, 2011, Capacity Building

  89. Monitor Agency Implementation of Plans

    US0003, 2011, Public Participation

  90. Provide Enforcement and Compliance Data Online

    US0004, 2011, Access to Information

  91. Advocate for Legislation Requiring Meaningful Disclosure

    US0005, 2011, Legislation & Regulation

  92. Apply Lessons from Recovery Act to Increate Spending Transparency

    US0006, 2011, Fiscal Openness

  93. Government-Wide Reporting Requirements for Foreign Aid

    US0007, 2011, Access to Information

  94. Use Performanc.Gov to Improve Government Performance and Accountability

    US0008, 2011, Public Participation

  95. Overhaul the Public Participation Interface on Regulations.Gov

    US0009, 2011, Legislation & Regulation

  96. Launch Expertnet

    US0010, 2011, E-Government

  97. Launch International Space Apps Competition

    US0011, 2011, E-Government

  98. Launch “We the People”

    US0012, 2011, E-petitions

  99. Open Source “We the People”

    US0013, 2011, E-petitions

  100. Develop Best Practices and Metrics for Public Participation

    US0014, 2011, Capacity Building

  101. Professionalize the FOIA Administration

    US0015, 2011, Access to Information

  102. Harness the Power of Technology

    US0016, 2011, Access to Information

  103. Advocate for Legislation on Whistleblower Protection

    US0017, 2011, Anti-Corruption

  104. Explore Executive Authority to Protect Whistleblowers

    US0018, 2011, Anti-Corruption

  105. Implement the EITI

    US0019, 2011, Anti-Corruption

  106. Partnership to Build on Recent Progress

    US0020, 2011, Anti-Corruption

  107. Promote Data.Gov to Spur Innovation Through Open Sourcing

    US0021, 2011, Access to Information

  108. Data.Gov: Foster Communities on Data.Gov

    US0022, 2011, Access to Information

  109. Begin Online National Dialogue with the American Public

    US0023, 2011, Public Participation

  110. Update Government-Wide Policies for Websites

    US0024, 2011, Public Participation

  111. Promote Smart Disclosure to Ensure Timely Release of Information

    US0025, 2011, Access to Information

  112. Publish Guidelines on Scientific Data

    US0026, 2011, Access to Information

Open Government Partnership