Open Data for Public Health (US0110)

• What’s in the 2019 Action PlansOpen Data for Public Health (August 1, 2020)

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).

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.

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.

Commitment 6. Use Open Data to Fuel Innovation to Improve Public Health

● Verifiable: Yes

● Does it have an open government lens? Yes

● Potential for results: Minor

● Completion: Substantial

● Did it open government? Major

Implementing Agency: Department of Health and Human Services (HHS)

Context and Objectives

This was an innovative commitment that sought to use open data to improve public health outcomes. It had three broad components. The first was series of co-creation events to discover insights from a comprehensive set of federal, state, and private datasets related to the opioid crisis. The second was a series of Lyme Innovation events to leverage technologies and co-create solutions alongside patients and practitioners, followed by the launch of a new public-private collaboration, the Lyme and Tick-Borne Disease Innovation Accelerator. The third was the launch of 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.

The commitment’s dual focus on opioids and Lyme disease made it highly relevant for the national context. Tens of thousands of Americans die from drug overdoses every year. More than 90 people were dying from opioid overdoses every single day when HHS declared it a public health emergency in 2017—a declaration that was renewed in 2022. [30] Lyme disease, in turn, is the fastest-growing vector-borne disease in the country. Approximately 476,000 people get Lyme disease in the United States every year. [31] The disease entails billions of dollars in direct and indirect medical costs, on top of causing immense human suffering.

The commitment was originally assessed as having a minor potential impact. Some of the components that were found to be most promising—notably, the listening sessions meant to get feedback from Lyme stakeholders—were tainted by lack of determination of a clear and measurable output. Additionally, some of these had already taken place before the start of the NAP implementation period.

The commitment was implemented substantially: two out of three components were fully implemented. The Lyme disease portion was implemented in a more ambitious way than foreseen. The portion pertaining to the opioid crisis, on the other hand, appears to have lost steam when the official in charge, then-HHS Chief Data Officer, left in 2020. The official in charge of the Lyme initiative acknowledged that the opioid crisis was “in many ways a much bigger challenge, financially, because of the human toll and because of the many more players involved.” [32]

Did It Open Government? Major

The process to develop a Lyme Innovation initiative was launched in late 2018, before the NAP kicked off. But most of its activities took place under the umbrella of the NAP. [33] Most importantly, the open government perspective gave it an unforeseen boost. That boost helped it evolve into a full-blown, ongoing initiative that is likely to have lasting results beyond the implementation period of the NAP. [34]

As part of Lyme Innovation, in 2020 HHS launched the LymeX Innovation Accelerator (LymeX), a partnership with the Steven & Alexandra Cohen Foundation. At $25M, LymeX is the world’s largest public-private partnership for Lyme disease. [35] In 2021, the Lyme Initiative published Health+, a report distilling nearly 700 hours of human-centered research aimed at understanding this complex illness through the lived experiences of patients. [36] And in May 2022, it launched the LymeX Diagnostics Prize, offering $10M in prizes for the next-generation Lyme diagnostics. [37]

The Lyme Innovation initiative is a patient-centered, data-driven approach to Lyme disease and other tick-borne illnesses. It views patients as not just the targets for prevention, diagnostics, and treatment but also the driving forces of innovation. In other words, the initiative is based on dialogue and consultation with its main stakeholders—patients and their families. This required a 180-degree turn in the understanding of the relationship between government and citizens.

The officer in charge of the commitment, HHS Chief Data Scientist Kristen Honey, [38] highlighted that the initiative was born from the ground up. It was included in the NAP in response to a demand expressed by patients and advocates who had urged the government to take action on Lyme disease for years, including through online petitions.

According to Honey, the fact that this commitment was included in the NAP made a difference because it gave her a “top cover” allowing to “cut through a lot of layers of bureaucracy.” Without it, the administration might not have formally agreed to allow the Lyme Innovation initiative to move forward. The explicit application of open government principles and practices—namely, transparency and participation—helped unblock a relationship that had long been plagued by resentment and distrust.

As Honey explained, “The open government approach helped tackle the challenge from a different perspective. For decades there was so much acrimony and bad blood between science and government on one side and the patients and advocates on the other. They did not want anything to do with each other. … There was so much pent-up anger and hurt. These were moms who watched their kids die who would have been okay if they had proper treatment. … We’d had 30 years of no constructive government, with maybe three minutes for public comment, a one-way checkbox without any dialogue.” [39]

The open government approach enabled an unusual level of public engagement. LymeX brought organizations like LymeDisease.org to the table, intent on bridging the gap between patients and policy makers. [40] Engagement was based on the acknowledgment that “people are the experts in their own experience. Emotions are going to be what they are, but if we can sit with that and acknowledge it and validate it and help people feel heard, then maybe there’s a hope that collectively the community could move through the anger, understanding the problem and trying to solve it together. It was hard in the beginning, but it worked.” [41]

In sum, this appears to have been a case in which it was important that the initiative unfolded within the framework of an open government NAP. Radical transparency—including holding open events and sharing recordings and full transcripts—and consultations followed by the provision of feedback helped overcome lack of trust in government and science. As Honey puts it, “I don't think we could have done this behind closed doors. People were judging us on the prior 30 years, and we couldn’t have talked them into giving us a chance if we hadn’t done it this way.” [42]

Looking Ahead

Commitment 6 has not been carried over to the next NAP. The participatory component is what made this commitment a success from the open government perspective. While the Lyme Initiative will continue long after the end of the NAP implementation, it is important to acknowledge that the participatory component is fragile. If that component is not put into practice on a permanent basis, it can dissipate.