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 D...

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Veröffentlicht in:The Milbank quarterly 2024-06, Vol.102 (2), p.463-502
Hauptverfasser: SCHMIT, CASON D., LARSON, BRIAN N., TANABE, THOMAS, RAMEZANI, MAHIN, ZHENG, QI, KUM, HYE‐CHUNG
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container_end_page 502
container_issue 2
container_start_page 463
container_title The Milbank quarterly
container_volume 102
creator SCHMIT, CASON D.
LARSON, BRIAN N.
TANABE, THOMAS
RAMEZANI, MAHIN
ZHENG, QI
KUM, HYE‐CHUNG
description 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 publi
doi_str_mv 10.1111/1468-0009.12700
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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.</description><identifier>ISSN: 0887-378X</identifier><identifier>ISSN: 1468-0009</identifier><identifier>EISSN: 1468-0009</identifier><identifier>DOI: 10.1111/1468-0009.12700</identifier><identifier>PMID: 38739543</identifier><language>eng</language><publisher>United States: Blackwell Publishing Ltd</publisher><subject>Adult ; African Americans ; Black or African American ; Comfort ; Conjoint analysis ; COVID-19 - epidemiology ; Data ; Discrimination ; Elections ; Female ; Health information ; Humans ; identifiable data ; Male ; Middle Aged ; Minority &amp; ethnic groups ; Pandemics ; Politics ; Population ; Population (statistical) ; Preferences ; Privacy ; privacy preferences ; Public Health ; Public Opinion ; Regression models ; secondary data use ; Statistical analysis ; Subgroups ; Surveys and Questionnaires ; Systemic racism ; United States</subject><ispartof>The Milbank quarterly, 2024-06, Vol.102 (2), p.463-502</ispartof><rights>2024 The Authors. published by Wiley Periodicals LLC on behalf of The Milbank Memorial Fund.</rights><rights>2024 The Authors. 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Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c3670-6d10db5665d125eb6dcc3167baff910358a7e155ba5948668586da9e95df3c9c3</cites><orcidid>0000-0002-7929-7198</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://onlinelibrary.wiley.com/doi/pdf/10.1111%2F1468-0009.12700$$EPDF$$P50$$Gwiley$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://onlinelibrary.wiley.com/doi/full/10.1111%2F1468-0009.12700$$EHTML$$P50$$Gwiley$$Hfree_for_read</linktohtml><link.rule.ids>314,780,784,1417,27866,27924,27925,30999,45574,45575</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/38739543$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>SCHMIT, CASON D.</creatorcontrib><creatorcontrib>LARSON, BRIAN N.</creatorcontrib><creatorcontrib>TANABE, THOMAS</creatorcontrib><creatorcontrib>RAMEZANI, MAHIN</creatorcontrib><creatorcontrib>ZHENG, QI</creatorcontrib><creatorcontrib>KUM, HYE‐CHUNG</creatorcontrib><title>Changing US Support for Public Health Data Use Through Pandemic and Political Turmoil</title><title>The Milbank quarterly</title><addtitle>Milbank Q</addtitle><description>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. 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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.</abstract><cop>United States</cop><pub>Blackwell Publishing Ltd</pub><pmid>38739543</pmid><doi>10.1111/1468-0009.12700</doi><tpages>40</tpages><orcidid>https://orcid.org/0000-0002-7929-7198</orcidid><oa>free_for_read</oa></addata></record>
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subjects Adult
African Americans
Black or African American
Comfort
Conjoint analysis
COVID-19 - epidemiology
Data
Discrimination
Elections
Female
Health information
Humans
identifiable data
Male
Middle Aged
Minority & ethnic groups
Pandemics
Politics
Population
Population (statistical)
Preferences
Privacy
privacy preferences
Public Health
Public Opinion
Regression models
secondary data use
Statistical analysis
Subgroups
Surveys and Questionnaires
Systemic racism
United States
title Changing US Support for Public Health Data Use Through Pandemic and Political Turmoil
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