Changing US Support for Public Health Data Use Through Pandemic and Political Turmoil.

Policy Points This study examines the impact of several world-changing events in 2020, such as the pandemic and widespread racism protests, on the US population's comfort with the use of identifiable data for public health. Before the 2020 election, there was no significant difference between Democrats and Republicans. However, African Americans exhibited a decrease in comfort that was different from other subgroups. Our findings suggest that the public remained supportive of public health data activities through the pandemic and the turmoil of 2020 election cycle relative to other data use. However, support among African Americans for public health data use experienced a unique decline compared to other demographic groups. CONTEXT: Recent legislative privacy efforts have not included special provisions for public health data use. Although past studies documented support for public health data use, several global events in 2020 have raised awareness and concern about privacy and data use. This study aims to understand whether the events of 2020 affected US privacy preferences on secondary uses of identifiable data, focusing on public health and research uses. METHODS: We deployed two online surveys-in February and November 2020-on data privacy attitudes and preferences using a choice-based-conjoint analysis. Participants received different data-use scenario pairs-varied by the type of data, user, and purpose-and selected scenarios based on their comfort. A hierarchical Bayes regression model simulated population preferences. FINDINGS: There were 1,373 responses. There was no statistically significant difference in the population's data preferences between February and November, each showing the highest comfort with population health and research data activities and the lowest with profit-driven activities. Most subgroups' data preferences were comparable with the population's preferences, except African Americans who showed significant decreases in comfort with population health and research. CONCLUSIONS: Despite world-changing events, including a pandemic, we found bipartisan public support for using identifiable data for public health and research. The decreasing support among African Americans could relate to the increased awareness of systemic racism, its harms, and persistent disparities. The US population's preferences support including legal provisions that permit public health and research data use in US laws, which are currently lacking specific public health use permissions.

Views on increased federal access to state and local National Syndromic Surveillance Program data: a nominal group technique study with state and local epidemiologists.

BACKGROUND: US public health authorities use syndromic surveillance to monitor and detect public health threats, conditions, and trends in near real-time. Nearly all US jurisdictions that conduct syndromic surveillance send their data to the National Syndromic Surveillance Program (NSSP), operated by the US. Centers for Disease Control and Prevention. However, current data sharing agreements limit federal access to state and local NSSP data to only multi-state regional aggregations. This limitation was a significant challenge for the national response to COVID-19. This study seeks to understand state and local epidemiologists' views on increased federal access to state NSSP data and identify policy opportunities for public health data modernization. METHODS: In September 2021, we used a virtual, modified nominal group technique with twenty regionally diverse epidemiologists in leadership positions and three individuals representing national public health organizations. Participants individually generated ideas on benefits, concerns, and policy opportunities relating to increased federal access to state and local NSSP data. In small groups, participants clarified and grouped the ideas into broader themes with the assistance of the research team. An web-based survey was used to evaluate and rank the themes using five-point Likert importance questions, top-3 ranking questions, and open-ended response questions. RESULTS: Participants identified five benefit themes for increased federal access to jurisdictional NSSP data, with the most important being improved cross-jurisdiction collaboration (mean Likert = 4.53) and surveillance practice (4.07). Participants identified nine concern themes, with the most important concerns being federal actors using jurisdictional data without notice (4.60) and misinterpretation of data (4.53). Participants identified eleven policy opportunities, with the most important being involving state and local partners in analysis (4.93) and developing communication protocols (4.53). CONCLUSION: These findings identify barriers and opportunities to federal-state-local collaboration critical to current data modernization efforts. Syndromic surveillance considerations warrant data-sharing caution. However, identified policy opportunities share congruence with existing legal agreements, suggesting that syndromic partners are closer to agreement than they might realize. Moreover, several policy opportunities (i.e., including state and local partners in data analysis and developing communication protocols) received consensus support and provide a promising path forward.

A Study of Publicly Available Resources Addressing Legal Data-Sharing Barriers: Systematic Assessment.

BACKGROUND: United States data protection laws vary depending on the data type and its context. Data projects involving social determinants of health often concern different data protection laws, making them difficult to navigate. OBJECTIVE: We systematically aggregated and assessed useful online resources to help navigate the data-sharing landscape. METHODS: We included publicly available resources that discussed legal data-sharing issues with some health relevance and published between 2010 and 2019. We conducted an iterative search with a common string pattern using a general-purpose search engine that targeted 24 different sectors identified by Data Across Sectors for Health. We scored each online resource for its depth of legal and data-sharing discussions and value for addressing legal barriers. RESULTS: Out of 3710 total search hits, 2721 unique URLs were reviewed for scope, 322 received full-text review, and 154 were selected for final coding. Legal agreements, consent, and agency guidance were the most widely covered legal topics, with HIPAA (The Health Insurance Portability and Accountability Act), Family Educational Rights and Privacy Act (FERPA), Title 42 of the Code of Federal Regulations Part 2 being the top 3 federal laws discussed. Clinical health care was the most prominent sector with a mention in 73 resources. CONCLUSIONS: This is the first systematic study of publicly available resources on legal data-sharing issues. We found existing gaps where resources covering certain laws or applications may be needed. The volume of resources we found is an indicator that real and perceived legal issues are a substantial barrier to efforts in leveraging data from different sectors to promote health.

Changes to Timeliness and Completeness of Infectious Disease Reporting in Texas After Implementation of an Epidemiologic Capacity Program.

OBJECTIVES: The objective of this study was to characterize the changes in timeliness and completeness of disease case reporting in Texas in response to an increasing number of foodborne illnesses and high-consequence infectious disease investigations and the Texas Department of State Health Services' new state-funded epidemiologist (SFE) program. METHODS: We extracted electronic disease case reporting data on 42 conditions from 2012 through 2016 in all local health department (LHD) jurisdictions. We analyzed data on median time for processing reports and percentage of complete reports across time and between SFE and non-SFE jurisdictions using Mann-Whitney t tests and z scores. RESULTS: The median time of processing improved from 13 days to 10 days from 2012 to 2016, and the percentage of disease case reports that were complete improved from 19.6% to 27.7%. Most reports were for foodborne illnesses; both timeliness (11 to 7 days) and completeness (20.9% to 23.5%) improved for these reports. CONCLUSIONS: Disease reporting improvements in timeliness and completeness were associated with the SFE program and its enhancement of epidemiologic capacity. SFEs were shown to improve surveillance metrics in LHDs, even in jurisdictions with a high volume of case reports. Adding epidemiologist positions in LHDs produces a tangible outcome of improved disease surveillance.

Identifying and prioritizing benefits and risks of using privacy-enhancing software through participatory design: a nominal group technique study with patients living with chronic conditions.

OBJECTIVE: While patients often contribute data for research, they want researchers to protect their data. As part of a participatory design of privacy-enhancing software, this study explored patients' perceptions of privacy protection in research using their healthcare data. MATERIALS AND METHODS: We conducted 4 focus groups with 27 patients on privacy-enhancing software using the nominal group technique. We provided participants with an open source software prototype to demonstrate privacy-enhancing features and elicit privacy concerns. Participants generated ideas on benefits, risks, and needed additional information. Following a thematic analysis of the results, we deployed an online questionnaire to identify consensus across all 4 groups. Participants were asked to rank-order benefits and risks. Themes around "needed additional information" were rated by perceived importance on a 5-point Likert scale. RESULTS: Participants considered "allowance for minimum disclosure" and "comprehensive privacy protection that is not currently available" as the most important benefits when using the privacy-enhancing prototype software. The most concerning perceived risks were "additional checks needed beyond the software to ensure privacy protection" and the "potential of misuse by authorized users." Participants indicated a desire for additional information with 6 of the 11 themes receiving a median participant rating of "very necessary" and rated "information on the data custodian" as "essential." CONCLUSIONS: Patients recognize not only the benefits of privacy-enhancing software, but also inherent risks. Patients desire information about how their data are used and protected. Effective patient engagement, communication, and transparency in research may improve patients' comfort levels, alleviate patients' concerns, and thus promote ethical research.

Authority of Pharmacists to Administer Human Papillomavirus Vaccine: Alignment of State Laws With Age-Level Recommendations.

OBJECTIVES: One strategy to increase the uptake of human papillomavirus (HPV) vaccine among adolescents is through the use of pharmacists. Our objectives were to (1) use a publicly available database to describe the statutory and regulatory authority of pharmacists to administer the HPV vaccine in the United States and (2) discuss how the current status of laws may influence achievement of the Healthy People 2020 goal of 80% HPV vaccination rate for teenagers aged 13-15. METHODS: Using information from the Centers for Disease Control and Prevention's (CDC's) Public Health Law Program database, we identified state laws in effect as of January 1, 2016, giving pharmacists authority to administer vaccines. We used a standardized analysis algorithm to determine whether states' laws (1) authorized pharmacists to administer HPV vaccine, (2) required third-party authorization for pharmacist administration, and (3) restricted HPV vaccine administration by pharmacists to certain patient age groups. RESULTS: Of 50 states and the District of Columbia, 40 had laws expressly granting pharmacists authority to administer HPV vaccine to patients, but only 22 had laws that authorized pharmacists to vaccinate preadolescents aged 11 or 12 (ie, the CDC-recommended age group). Pharmacists were granted prescriptive authority by 5 states, and they were given authority pursuant to general (non-patient-specific) third-party authorization (eg, a licensed health care provider) by 32 states or patient-specific third-party authorization by 3 states. CONCLUSIONS: Most states permitted pharmacists to administer HPV vaccines only to boys and girls older than 11 or 12, which may hinder achievement of the Healthy People 2020 goal for HPV vaccination. Efforts should be made to strengthen the role of pharmacists in addressing this public health issue.

Falling short: how state laws can address health information exchange barriers and enablers.

Objective: Research on the implementation of health information exchange (HIE) organizations has identified both positive and negative effects of laws relating to governance, incentives, mandates, sustainability, stakeholder participation, patient engagement, privacy, confidentiality, and security. We fill a substantial research gap by describing whether comprehensive state and territorial HIE legal frameworks address identified legal facilitators and barriers. Materials and Methods: We used the Westlaw database to identify state and territorial laws relating to HIEs in effect on June 7, 2016 (53 jurisdictions). We blind-coded all laws and addressed coding discrepancies in peer-review meetings. We recorded a consensus code for each law in a master database. We compared 20 HIE legal attributes with identified barriers to and enablers of HIE activity in the literature. Results: Forty-two states, the District of Columbia, and 2 territories have laws relating to HIEs. On average, jurisdictions address 8.32 of the 20 criteria selected in statutes and regulations. Twenty jurisdictions unambiguously address ≤5 criteria in statutes and regulations. None of the significant legal criteria are unambiguously addressed in >60% of the 53 jurisdictions. Discussion: Laws can be barriers to or enablers of HIEs. However, jurisdictions are not addressing many significant issues identified by researchers. Consequently, there is a substantial risk that existing legal frameworks are not adequately supporting HIEs. Conclusion: The current evidence base is insufficient for comparative assessments or impact rankings of the various factors. However, the detailed Centers for Disease Control and Prevention dataset of HIE laws could enable investigations into the types of laws that promote or impede HIEs.

The Association Between State-Level Health Information Exchange Laws and Hospital Participation in Community Health Information Organizations.

Evidence suggests that health information exchange (HIE) is an effective strategy to improve efficiency and quality of care, as well as reduce costs. A complex patchwork of federal and state legislation has developed over time to encourage HIE activity. Hospitals and health systems have adopted various HIE models to meet the requirements of these statutes and regulations. Given the complexity of HIE laws, it is important to understand how these legal levers influence HIE engagement. We combined data from two unique data sources to examine the association between state-level HIE laws and hospital engagement in community HIEs. Our results identified three legal provisions of state laws (HIE authorization, financial & non-financial incentives, opt-out consent) that increased the likelihood of community HIE engagement. Other provisions decreased the likelihood of engagement. This analysis provides foundational evidence about the utility of HIE laws. More research is needed to determine causal relationships.

Expanding state laws and a growing role for pharmacists in vaccination services.

OBJECTIVES: Gaps in vaccination coverage leave populations vulnerable to illnesses. Since the 1990s, there has been a growing movement to improve vaccination access by giving pharmacists the authority to administer vaccines according to state laws. Understanding the variation of pharmacist vaccination laws over time is critical to understanding the effect of improving access to vaccination services. METHODS: We identified relevant statutes and regulations with the use of Westlaw legal databases. A 4-stage coding process identified 220 legal variables of pharmacist vaccination authority. Each jurisdiction's laws were coded against these 220 legal variables. The resulting legal dataset was then evaluated to determine whether jurisdictions expanded or restricted pharmacist vaccination authorities over time. RESULTS: From 1971 to 2016, jurisdictions made 627 changes to statutes and regulations relating to pharmacist vaccination authority. There were 85 expansions, 3 restrictions, and 22 regulatory clarifications. Eight changes were deemed to be unclear, and 479 changes did not substantively alter the scope of pharmacist vaccination authority. CONCLUSION: Collectively, the laws in 50 states and DC paint a clear picture: the scope of pharmacists' vaccination authority is expanding. Jurisdictions are allowing pharmacists to administer more vaccines to younger patients with less direct prescriber oversight. This clear expansion of pharmacist vaccination authority stands in contrast to the reservations expressed by some physician groups for pharmacists as vaccination providers. However, laws in some states still do not permit pharmacists to vaccinate according to the Advisory Committee on Immunization Practices recommendations.