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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

Open Government Partnership