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Tsogolo La Thanzi 3 (TLT-3), Malawi, 2019 [Healthy Futures] (ICPSR 39882)

Released/updated on: 2026-08-06
Time period: 2019-01-01--2019-12-31

Tsogolo La Thanzi (TLT) is a decade-long population-based cohort study of young women and men from Balaka, Malawi. Tsogolo La Thanzi means "Health Futures" in Chichewa, Malawi's most widely spoken language. TLT has followed young adults (ages 15-25 at enrollment, 15-35 inclusive) as they navigate relationships and childbearing within the context of a generalized AIDS epidemic. TLT enrolled more than 3000 individuals and collected 11 waves of data, covering a 10-year period (2009-2019) that spans massive changes in the HIV treatment context in Malawi as well as the ages of peak incidence and peak fertility for female respondents.

This particular study contains the data collected from an additional survey referred to as Tsogolo La Thanzi 3 (TLT-3), fielded in 2019, following the release of ten waves of data collected between 2009 and 2015. Unlike the past where the sample included male partners, this third round of data collection focused solely on women.

TLT-3 covered many of the same topics found in the original TLT multi-wave project such as: relationships, religion, HIV/AIDS, pregnancy, marriage, sexually transmitted diseases, and future expectations.

Additionally, modules specific to TLT-3 included: kinship, mental health, and trust in clinics. These data can be used cross-sectionally or can be merged with previous waves to facilitate analyses of a full ten years of social change in Balaka township and across the life course.

Self-published
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MiBEST - Preferences and predictors driving opioid-involved polysubstance use profiles and trajectories: Implications for improving care (ICPSR 247225)

Released/updated on: 2026-06-03
Geographic coverage: United States
Little is known about what motivates people to use multiple drugs. Understanding these factors is important for tailoring treatment services. Behavioral economic theory, which determines how much value individuals assign to drugs and potential negative consequences, provides a framework to understand the choices people make. This project will identify patterns, motivating factors, and long-term trajectories of opioid-involved polysubstance use behaviors and treatment. This research will use a range of methods to analyze substance use episodes as well as examine motives and preferences associated with polysubstance use behaviors and how they change over time. The findings will be combined into a toolkit to inform timing, type, and tailoring of interventions and policies to guide implementation of effective clinical strategies and policies for managing polysubstance use in healthcare systems. 
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Effectiveness of Peer Navigation to Link Released HIV-Positive Jail Inmates to HIV Care (LINK LA), Los Angeles, California, 2012-2016 (ICPSR 39789)

Released/updated on: 2026-06-02
Geographic coverage: United States, Los Angeles, California
Time period: 2012-01-01--2016-12-31

This study is part of the Seek, Test, Treat and Retain (STTR) Collaboration Project that involved over twenty studies in the fields of HIV and drug abuse. All studies were independently developed, but were chosen for the collaboration because they focused on one or more steps of the HIV treatment cascade: Seek, Test, Treat and Retain. As part of STTR Collaboration Project, the studies were grouped into Criminal Justice-related studies and Vulnerable Population-related studies. The data collected by these studies included twelve common domains (e.g., Demographic characteristics, Mental Health) in each of which a shared questionnaire or instrument was taken up by the studies and adapted to fit the study.

This study was a Randomized Controlled Trial (RCT) of a peer-based health system navigation intervention among individuals assigned to the intervention group compared with those assigned to the control group (usual care transitional management services). Baseline interviews were conducted during incarceration while the follow-up interviews were conducted at months 2, 6 and 12 following release from jail to the community. For participants who were re-incarcerated during, interviews were conducted in the jail setting to ensure high study retention. The goal was to improve engagement and retention in HIV care.

Self-published

National Neighborhood Data Archive (NaNDA): Healthcare Services by Census Tract and ZCTA, United States, 1990-2022 (ICPSR 209050)

Released/updated on: 2026-03-31
Time period: 1990-01-01--2022-12-31

This dataset contains measures of the number and density of health care services per United States Census Tract or ZIP Code Tabulation Area (ZCTA) from 1990 through 2022. The dataset includes four separate files for four different geographic areas (GIS shapefiles from the United States Census Bureau).

Self-published

Centering Disabled User Experience Replication Data (ICPSR 247251)

Released/updated on: 2026-03-31
Geographic coverage: Virginia, United States
Time period: 2025-03-01--2025-05-31
Study Information
Study Title: Centering the Disabled User Experience of Health Information in a World Driven by Artificial Intelligence: A Mixed Methods Investigation
Study Description: Disabled people are more susceptible to infectious diseases (like COVID-19) than nondisabled people; finding accurate, relevant health information is especially pressing. Internet search technologies are often touted as empowering disabled people who seek healthcare information online, but does this depiction reflect reality? This dissertation encompasses three studies assessing disabled user experiences in finding health information online: a structured literature review, a cross-sectional survey, and a concurrent think-aloud study. The literature review shows that, across 11 articles, disabled people were often not considered in public health messaging surrounding COVID-19. We then analyze 142 cross-sectional survey responses about usability and satisfaction regarding web-based COVID-19 information. Usability and satisfaction were both lower in people who had developmental or mental health disabilities (r=-0.21, p=0.0131 for usability; r=-0.24, p=0.0111 for satisfaction). Satisfaction was also lower among screen magnification or closed caption users (r=-0.21, p=0.0262). In the concurrent think-aloud study, ten participants were asked to internet search four prompts and narrate their experiences in real-time. Themes included concerns about accessibility/usability, AI-generated information, peer-reviewed articles, hospital or government webpages, news/advertising, and sentiment/trust. Participants also reported physical fatigue (n=5) and distracting layouts (n=5) while searching online. All participants encountered AI-generated information in their searches. This dissertation ends in reflection on how future work by scholars in health and information sciences should be shaped by the input of disabled people.
Study Author:Sonal Sathe
Study URL: 
https://hdl.handle.net/10919/139899
Dataset Information
Dataset Title:Replication Data for Centering the Disabled User Experience of Health Information in a World Driven by Artificial Intelligence
Dataset Description:
The data in this archive can be used to replicate reported findings for Chapter 3 in the dissertation listed above. Data were collected using an online QuestionPro survey of adults living in the US state of Virginia from March to May of 2025, with a goal of recruiting similar numbers of (self-identified) disabled and non-disabled participants. Respondents were recruited through a mixed convenience sample using fliers and email distribution lists through universities, healthcare offices, and disability groups in Virginia. The survey focused on respondent disability status and the usability of accessibility tools and health nformation tools, with particular reference to Covid-19 related information seeking. In addition to demographic questions and rosters of disability types and accessibility tool types, the survey included adapted versions of the System Usability Scale (Deshmukh & Chalmeta, 2024) and Health-ITUES (Schnall et al, 2018).
Prior to archiving, data were anonymized by the removal of potentially identifying information and a reduction in the number of categories of certain demographic variables. Scales were also adjusted prior to archiving by reverse coding items scored in the negative direction. A full codebook with original question wordings and coded values can be found in `codebook.txt`.
Dataset correspondence to: Nathaniel D. Porter ([email protected])
File manifest
  • `data_analysis.R`: R code to replicate analyses
  • `data_preparation.R`: R code originally used to anonymize and clean the data (requires raw data not included in archive; provided for transparency)
  • `readme.Rmd`: project and file information
  • `codebook.txt`: plain text codebook file
  • `Disabled_UXR_clean_data.csv`: anonymized replication datafile
References
Deshmukh, A. M., & Chalmeta, R. (2024). Validation of system usability scale as a usability metric to evaluate voice user interfaces. PeerJ Computer Science, 10, e1918. https://doi.org/10.7717/peerj-cs.1918
Schnall, R., Cho, H., & Liu, J. (2018). Health Information Technology Usability Evaluation Scale (Health-ITUES) for Usability Assessment of Mobile Health Technology: Validation Study. JMIR mHealth and uHealth, 6(1), e4. https://doi.org/10.2196/mhealth.8851
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Hearing for Communication and Resident Engagement (HearCARE), Pennsylvania, 2021-2023 (ICPSR 39345)

Released/updated on: 2026-03-30
Geographic coverage: United States, Pennsylvania
Time period: 2021-06-01--2023-09-30

Amplification is an evidence-based front-line treatment for those with impaired communication secondary to Age Related Hearing Loss (ARHL). ARHL is the most prevalent cause of communication impairment among older adults and multiple existing evidence-based care models exist to address it. This study compared the two most common models of care (defined below) for ARHL provided to adults in assisted living/personal care communities.

  • The Consult Model (i.e., usual care) was an acute care strategy, relying on a monthly Audiologist visit to the facility.
  • The Engage Model was a chronic care approach to supportive hearing loss self-management of ARHL. Engage includes (a) hearing screening for all residents, (b) an individualized communication plan for those with an identified hearing loss (e.g., one-to-one, group, telephone, television plans, hearing aid trouble shooting, communication strategies, etc.), (c) provision of simple, non-custom amplifiers, (d) referral to audiology if needed, and (e) ongoing support provided by trained personnel (Communication Facilitator) under the supervision of the audiologist.

This study included three separate sample populations at 10 medical facilities. The staff at the medical facilities were selected to measure job satisfaction (DS1). Residents of the medical facilities were sampled to collect measures related to the impact of hearing on an individual's life and general demographics (DS2 and DS3). And the family of the residents were sampled to measure caregiver burden (DS4).

Curated

Preserving Kidney Function in Children with Chronic Kidney Disease (PRESERVE), United States, 2009-2024 (ICPSR 39689)

Released/updated on: 2026-03-30
Geographic coverage: United States
Time period: 2009-01-01--2023-01-31, 2023-01-01--2024-12-31

The Preserving Kidney Function in Children With Chronic Kidney Disease (PRESERVE) study was designed to provide new knowledge to inform shared decision-making regarding blood pressure (BP) management for pediatric chronic kidney disease (CKD). PRESERVE compared the effectiveness of alternative strategies for monitoring and treating hypertension on preserving kidney function; expanded the National Patient-Centered Clinical Research Network (PCORnet) Common Data Model by adding pediatric- and kidney-specific variables and linking electronic health record data to other kidney disease databases; and assessed the lived experiences of patients related to BP management.

Participants were recruited from 15 clinical institutions across the United States. The research team analyzed electronic health record (EHR) data from 11,851 children with CKD and their caregivers to compare different ways to monitor and treat BP to preserve kidney function. In addition, a subset of patients and caregivers completed an online survey detailing patient-reported outcomes, such as fatigue, life satisfaction, pain levels, sleep disturbance, anxiety, and peer relationships (n=395).

Due to the risk of re-identification based on unique patterns in the individual-level PCORnet electronic health record (EHR) data, patient privacy regulations prohibit the public release of the individual-level data. This collection contains the code underlying the analysis; instructions, codesets, and output lists for the PCORnet queries; and the survey questionnaires for patients and family members.

Curated

Examining the Institutional Medical Mistrust Scale (IMMS) in the COVID-19 Pandemic, United States, 2022 (ICPSR 39469)

Released/updated on: 2026-02-16
Geographic coverage: United States
Time period: 2022-01-01--2022-12-31

The objective of this study is to validate the Institutional Medical Mistrust Scale (IMMS) using a large, national population to better understand issues of public trust in healthcare and government organizations. The aims of this study are: (1) conduct a national population survey using the IMMS; (1a) examine the influence that healthcare organizations and governing institutions at the local, state, and federal level have on medical mistrust during the COVID-19 pandemic in the United States; (1b) test the psychometrics of the IMMS in a large national survey; (2) test the IMMS in a national population with intentional oversampling of African American/Black, Latinx, and chronic disease respondents in the United States.

The endpoints for this study are divided into psychosocial measures as well as physical measures including: (1) measurement of institutional medical mistrust among health care and local/state and federal government organizations; (2) mental and physical health; (3) vaccine uptake or hesitation; (4) factors associated with vaccine uptake or hesitation.

Self-published

National Neighborhood Data Archive (NaNDA): Essential Workers by Census Tract and ZIP Code Tabulation Area, United States, 2018-2022 (ICPSR 302178)

Released/updated on: 2026-01-29
Time period: 2018-01-01--2022-12-31

This dataset contains measures of essential workers at the census tract and ZIP Code Tabulation Area (ZCTA) levels in the United States for the years 2018-2022. The unit of analysis is geographic areas defined by Census Tract 2020 and ZCTA 2020 boundaries. Variables include total counts of essential workers and the proportion of essential workers within the civilian employed population aged 16 and older in each tract and ZCTA. The data are based on American Community Survey (ACS) five-year estimates for 2019-2023 and use essential worker designations from the American Civil Liberties Union (ACLU) classification aligned with Standard Occupational Classification codes.

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Improving Self-Care of Informal Caregivers of Adults with Heart Failure, United States, 2019-2024 (ICPSR 39524)

Released/updated on: 2026-01-20
Geographic coverage: United States
Time period: 2019-01-01--2024-12-31

This randomized controlled trial tested the efficacy of a virtual support health coaching intervention compared to a health information control group in improving self-care, decreasing stress, and improving coping and health status of informal caregivers of adults with heart failure. A secondary aim was to estimate intervention cost and cost-effectiveness. An exploratory aim was to explore the effect of caregiver outcomes on patient outcomes.

Self-published

Analysis of Risk Protection from Health Insurance Using PSID Data from the United States, 1999–2019 (ICPSR 301650)

Released/updated on: 2026-01-16
Geographic coverage: United States
Time period: 1999-01-01--2019-12-31

This paper investigates the risk protection from health insurance, accounting for the interaction between health care cost risk and other risks such as income risk. Using panel data on household-level consumption, income, and out-of-pocket health spending, the study found that standard health insurance contracts amplify other risks, while alternative contracts that limit out-of-pocket spending relative to income can provide better risk protection. The analysis uses household-level data from the Panel Study of Income Dynamics (PSID), waves 1999–2019. The PSID data were used to measure consumption, income, out-of-pocket health spending, health insurance status, and demographic characteristics over time. The long panel structure enabled analysis of within-household variation across different time horizons. The full replication package, including code and additional data files, is available at the Harvard Dataverse: https://doi.org/10.7910/DVN/GNDABS.

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National Profile of Local Health Departments, [United States], 2022 (ICPSR 39351)

Released/updated on: 2025-10-01
Geographic coverage: United States
Time period: 2022-01-01--2022-12-31
The National Association of County and City Health Officials (NACCHO) conducts the National Profile of Local Health Departments, commonly referred to as the Profile study, every three years as a census of local health departments (LHDs). This study describes the funding, staffing, governance, and activities of LHDs across the United States, developing a description of LHD infrastructure and practice. In the three decades since, NACCHO has conducted an additional nine Profile studies, including in 2022.
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Best Practices to Reduce COVID-19 in Group Homes for Individuals with Serious Mental Illness and Intellectual and Developmental Disabilities, Massachusetts, 2021-2022 (ICPSR 39404)

Released/updated on: 2025-09-18
Geographic coverage: United States, Massachusetts
Time period: 2021-01-01--2022-12-31

The overall goal for this project was to reduce the incidence of COVID-19, hospitalization, and mortality among adults with serious mental illness (SMI) and intellectual disabilities/developmental disabilities (IDD) in congregate living settings (i.e., group homes) in Massachusetts, as well as to reduce COVID-19 incidence among staff who work in these settings. The research team was guided by two comparative effectiveness questions:

  1. With the goal of prioritizing and making actionable best practices available as resources, what is the comparative effectiveness of various types and intensities of preventative interventions (e.g., screening, isolation, contact tracing, hand hygiene, physical distancing, use of face masks) in reducing rates of COVID-19, related hospitalizations, and related mortality in this population?
  2. With the goal of effectively implementing best practices, what is the most effective implementation strategy to reduce rates of COVID-19 in this population: using tailored best practices (TBP) with SMI/IDD residents and staff of group homes in mind, or general best practices (GBP) from state and federal standard guidelines for all congregate care settings?

The specific aims of this study were as follows:

Aim 1a. Synthesize existing baseline data collected by 6 state behavioral health agencies on COVID-19 rates, hospitalization, mortality, and use of infection prevention practices.

Aim 1b. Collect stakeholder input via surveys and virtual focus groups on staff and resident experiences and on barriers/facilitators to implementing recommended preventative practices.

Aims 2a and 2b. Determine the comparative effectiveness of various COVID-19 preventative practices by (Aim 2a) using a validated simulation model to estimate COVID-19 spread in group homes and (Aim 2b) obtaining stakeholder input on prioritizing and defining tailored best practices for implementation.

Aim 3. Compare the effectiveness of TBPs with GBPs by using a hybrid effectiveness-implementation cluster randomized controlled trial.

Data collected to answer Aims 1 and 2 served as the foundation for designing the Aim 3 trial. Data for the trial were collected in 3-month intervals beginning January 2021 (baseline) until October 2022 (15-month follow-up). Residents and staff were sampled from approximately 400 group homes. Primary implementation outcome measures were COVID-19 vaccination rates and fidelity scores. The primary effectiveness outcome measure was COVID-19 infection.

Notes: This collection contains only data from Aim 1a and Aim 3. Throughout the data and documentation, "intellectual and/or developmental disabilities" is abbreviated as both IDD and ID/DD.

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Improving Transition from Acute to Post-Acute Care following Traumatic Brain Injury (BRITE), United States, 2018-2022 (ICPSR 39094)

Released/updated on: 2025-09-17
Geographic coverage: United States
Time period: 2018-01-01--2022-12-31

The BRITE study (Brain Injury Rehabilitation: Improving the Transition Experience) was a six-center, 1:1 randomized controlled pragmatic trial with masked outcome assessment that compared the effectiveness of two established approaches to managing transition from inpatient rehabilitation facility discharge to the next phase of care for individuals with moderate-to-severe traumatic brain injury (TBI). The two established transition methods were (1) a standardized version of existing discharge procedures used at all six sites and (2) a standardized remotely-delivered case management approach that extended beyond the point of discharge, based on the protocol used within the Veteran's Health Administration and enhanced with input from patient and family stakeholders. The sample was stratified by site and discharge location (skilled nursing facility vs. discharge to home/community) based on the relatively lower frequency of discharge to facility (22 percent across all six study sites in 2015) and the expectation of high impact of discharge destination on outcomes. When a caregiver was available for an enrolled patient, they were also approached for consent to be surveyed, with some patients having up to two caregivers enrolled to account for changes in primary caregiver.

The following key outcome domains were assessed: (1) ability of patients to participate in the home and community as independently as possible, (2) health-related quality of life, (3) access to appropriate healthcare and reduced emergent or urgent healthcare, and (4) caregiver outcomes. These outcomes were assessed at 3, 6, 9 and 12 months after discharge from inpatient care. Participants were also given the standard TBI Model Systems follow-up assessment one-year post-injury. Types of medical insurance coverage and satisfaction with healthcare were examined at 6 and 12 months post-discharge.

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Improving Family-Centered Pediatric Trauma Care: The Standard of Care Versus the Virtual Pediatric Trauma Center, California, 2020-2022 (ICPSR 39210)

Released/updated on: 2025-07-14
Geographic coverage: United States, California
Time period: 2020-01-01--2023-12-31
The current standard of care in the treatment of children with physical trauma presenting to non-designated pediatric trauma centers is consultation with a pediatric trauma center by telephone. This includes contacting a pediatric trauma specialist and transferring any child with a potentially serious injury to a regionalized Level I pediatric trauma center. This approach to care frequently results in medically unnecessary transfers and may place undue burdens on families. A newer model of care, the Virtual Pediatric Trauma Center (VPTC), uses telemedicine to make the expertise of a Level I pediatric trauma center virtually available to any hospital. The VPTC is a model of care that utilizes telemedicine for acutely injured children presenting to non-pediatric trauma center hospitals to obtain consultations from pediatric trauma specialists. While the use of the VPTC model of care is increasing, there have been no comparisons of the VPTC to standard care of injured children at non-designated trauma centers with respect to patient- and family-centered outcomes. The goal of this study is to compare the current standard of care to the VPTC with respect to family-centered outcomes developed by parents and community advisory boards.
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Evaluating the Comparative Effectiveness of Telemedicine in Primary Care: Learning from the COVID-19 Pandemic, New York, 2021 (ICPSR 39346)

Released/updated on: 2025-07-01
Geographic coverage: New York City, United States, New York (state)
Time period: 2021-01-01--2021-12-31

During the COVID-19 pandemic, telemedicine emerged as the primary method of providing outpatient care in many regions with shelter-in-place and social distancing policies. This study aimed understand the impact of this rapid and widespread transition from in-person to remote visits on disparities in access to primary care, especially in chronic disease where ongoing communication between providers and patients is essential.

The newly developed or expanded telemedicine programs varied widely, raising questions about the effect of these differences on uptake of telemedicine among different patient populations and on patient-centered outcomes. Leveraging a natural experiment approach, this study examined rapidly changing telemedicine and in-person models of care during and after the COVID-19 crisis to determine whether certain patients could safely choose to continue telemedicine or telemedicine-supplemented care, rather than return to in-person care.

Self-published

Public Perceptions of AI in Healthcare Based on Reddit Posts (2020–2025) (ICPSR 231282)

Released/updated on: 2025-05-29
Geographic coverage: Earth
Time period: 2020-03-01--2025-03-31
This dataset contains 18,754 Reddit posts and comments related to artificial intelligence (AI) in healthcare, collected from March 2020 to March 2025. The dataset was used to analyze public sentiment and topic trends using BERTopic and sentiment classification models. The data includes original texts, sentiment labels, topic assignments, and c-TF-IDF keyword weights.
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The Irish Longitudinal Study on Ageing (TILDA), Wave 3, 2014-2015 (ICPSR 37106)

Released/updated on: 2025-05-12
Geographic coverage: Ireland
Time period: 2014-01-01--2015-12-31

This catalog record includes detailed variable-level descriptions, enabling data discovery and comparison. The TILDA Series data, including studies 34315, 38681, 37105, 37106, 38670, 38674, are currently unavailable at the request of the data producer due to concerns related to EU and Irish data privacy and data sharing rules. We are working to determine the best solution to continue to share these data with the research community. Individuals interested in obtaining TILDA data access at this time should reach out to the TILDA project directly (https://tilda.tcd.ie/data/accessing-data/).

The Irish Longitudinal Study on Ageing (TILDA) is a major inter-institutional initiative led by Trinity College Dublin which aims to produce a massive improvement in the quantity and quality of data, research and information relating to older people and ageing in Ireland. Eligible respondents for this study include individuals aged 50 and over and their spouses or partners of any age. The study involves interviews on a two yearly basis with a sample cohort of 8,504 people aged 50 and over (or their spouses/partners) and resident in Ireland, collecting detailed information on all aspects of their lives, including the economic (pensions, employment, living standards), health (physical, mental, service needs and usage) and social aspects (contact with friends and kin, formal and informal care, social participation). Both survey interviews and physical and biological measurements are utilized.

The third wave of TILDA interviews were undertaken between March 2014 and October 2015. Of the 7,445 interviewed in Wave 2, a third interview was obtained for 6,874 respondents. These consisted of the self, proxy and end-of-life interviews types. In addition to the returning respondents, 28 interviews were obtained from eligible household members who had chosen not to take part in Wave 1 or the new spouses/partners of existing respondents.

Demographic and background variables include age, sex, marital status, household composition, education, and employment.

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The Irish Longitudinal Study on Ageing (TILDA), Wave 4, 2016 (ICPSR 38670)

Released/updated on: 2025-05-12
Geographic coverage: Ireland
Time period: 2016-01-01--2016-12-31

This catalog record includes detailed variable-level descriptions, enabling data discovery and comparison. The TILDA Series data, including studies 34315, 38681, 37105, 37106, 38670, 38674, are currently unavailable at the request of the data producer due to concerns related to EU and Irish data privacy and data sharing rules. We are working to determine the best solution to continue to share these data with the research community. Individuals interested in obtaining TILDA data access at this time should reach out to the TILDA project directly (https://tilda.tcd.ie/data/accessing-data/).

The Irish Longitudinal Study on Ageing (TILDA) is a major inter-institutional initiative led by Trinity College Dublin which aims to produce a massive improvement in the quantity and quality of data, research and information relating to older people and ageing in Ireland. Eligible respondents for this study include individuals aged 50 and over and their spouses or partners of any age. The study involves interviews on a one year basis with a sample cohort of residents of Ireland, collecting detailed information on all aspects of their lives, including the economic (pensions, employment, living standards), health (physical, mental, service needs and usage) and social aspects (contact with friends and kin, formal and informal care, social participation). Both survey interviews and physical and biological measurements are utilized.

The fourth wave of TILDA interviews were undertaken between January and December 2016. A total of 5,713 participants completed the self-interview.

Demographic and background variables include age, sex, marital status, household composition, education, and employment.

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The Irish Longitudinal Study on Ageing (TILDA), Wave 5, 2018 (ICPSR 38674)

Released/updated on: 2025-05-12
Geographic coverage: Ireland
Time period: 2018-01-01--2018-12-31

This catalog record includes detailed variable-level descriptions, enabling data discovery and comparison. The TILDA Series data, including studies 34315, 38681, 37105, 37106, 38670, 38674, are currently unavailable at the request of the data producer due to concerns related to EU and Irish data privacy and data sharing rules. We are working to determine the best solution to continue to share these data with the research community. Individuals interested in obtaining TILDA data access at this time should reach out to the TILDA project directly (https://tilda.tcd.ie/data/accessing-data/).

The Irish Longitudinal Study on Ageing (TILDA) is a major inter-institutional initiative led by Trinity College Dublin which aims to produce a massive improvement in the quantity and quality of data, research and information relating to older people and ageing in Ireland. Eligible respondents for this study include individuals aged 50 and over and their spouses or partners of any age. The study involves interviews on a one year basis with a sample cohort of residents of Ireland, collecting detailed information on all aspects of their lives, including the economic (pensions, employment, living standards), health (physical, mental, service needs and usage) and social aspects (contact with friends and kin, formal and informal care, social participation). Both survey interviews and physical and biological measurements are utilized.

The fifth wave of TILDA interviews were undertaken between January and December 2018. A total of 4,978 participants completed the self-interview.

Demographic and background variables include age, sex, marital status, household composition, education, and employment.

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The Irish Longitudinal Study on Ageing (TILDA), COVID-19 Study, 2020 (ICPSR 38681)

Released/updated on: 2025-05-12
Geographic coverage: Ireland
Time period: 2020-01-01--2020-12-31

This catalog record includes detailed variable-level descriptions, enabling data discovery and comparison. The TILDA Series data, including studies 34315, 38681, 37105, 37106, 38670, 38674, are currently unavailable at the request of the data producer due to concerns related to EU and Irish data privacy and data sharing rules. We are working to determine the best solution to continue to share these data with the research community. Individuals interested in obtaining TILDA data access at this time should reach out to the TILDA project directly (https://tilda.tcd.ie/data/accessing-data/).

The Irish Longitudinal Study on Ageing (TILDA) collects information on all aspects of health, economic and social circumstances from adults aged 50 years and over who reside in Ireland. Waves of data collection take place every two years. TILDA provides a comprehensive and accurate picture of the characteristics, needs and contributions of older persons in Ireland to inform and support improvements in policy and practice; advancements in technology and innovation; tailored education and training through an enhanced ageing research infrastructure; harmonisation with leading international research to ensure adoption of best policy and practice and comparability of results. TILDA is necessary to act as the foundation on which we can plan appropriate health, medical, social and economic policies for our older adults.

Participants were invited to complete the COVID Self Completion Questionnaire to capture their experiences during the COVID-19 pandemic. This data collection was planned in response to the pandemic and took place during the time when Wave 6 fieldwork was originally scheduled to take place.

The TILDA COVID-19 Study covers a range of aspects of the lives of adults aged 60 years and older during the first few months of the pandemic. As well as information on changes to normal day activities due to social-distancing and other restrictions on social interactions, we examine how these alterations to peoples' lives have impacted on their physical and mental wellbeing. The study also records peoples' exposure to the virus as well as that of their families and friends.

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The Irish Longitudinal Study on Ageing (TILDA), Wave 1, 2009-2011 (ICPSR 34315)

Released/updated on: 2025-05-07
Geographic coverage: Ireland
Time period: 2009-01-01--2011-12-31

This catalog record includes detailed variable-level descriptions, enabling data discovery and comparison. The TILDA Series data files, including studies 34315, 38681, 37105, 37106, 38670, 38674, are no longer available from ICPSR and NACDA at the request of the data producer due to concerns related to EU and Irish data privacy and data sharing rules. Individuals interested in obtaining TILDA data access at this time should reach out to the TILDA project directly (https://tilda.tcd.ie/data/accessing-data/).

The Irish Longitudinal Study on Ageing (TILDA) is a major inter-institutional initiative led by Trinity College Dublin which aims to produce a massive improvement in the quantity and quality of data, research and information relating to older people and ageing in Ireland. Eligible respondents for this study include individuals aged 50 and over and their spouses or partners of any age. The study involves interviews on a two yearly basis with a sample cohort of 8,504 people aged 50 and over (or their spouses/partners) and resident in Ireland, collecting detailed information on all aspects of their lives, including the economic (pensions, employment, living standards), health (physical, mental, service needs and usage) and social aspects (contact with friends and kin, formal and informal care, social participation). Both survey interviews and physical and biological measurements are utilized. Demographic and background variables include age, sex, marital status, household composition, education, and employment.

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Interactive Computer-Assisted Recovery Enabler (ICARE): Treatment Support Tool for Substance-Using Offenders, North Carolina, 2022-2023 (ICPSR 39317)

Released/updated on: 2025-04-29
Geographic coverage: North Carolina, United States
Time period: 2022-11-01--2023-07-31

This study addressed a critical gap regarding the use of mobile phone technologies to assist in the treatment process for explicitly justice-involved populations. To address this gap, the study research included designing, implementing, and assessing the use of an appointment notification system called the Interactive Computer-Assisted Recovery Enabler (ICARE) tool. ICARE was developed to improve and support behavioral health nonclinical care management and probation compliance among individuals under community supervision who are referred by their probation officer (PO).

The purpose of the ICARE was to automatically transmit appointment reminders to Treatment Accountability for Safe Communities (TASC) clients, starting from the point of probation referral to the program, with the goal of increasing their care management appointment attendance, increasing their care management completion, and improving their probation compliance.

This research included a two study approach, one formative and one focused on outcomes, where the goal was to enhance the ability to support clients by:

  • increasing their engagement and retention in care management and treatment
  • reducing the degree of their substance use and improving mental health
  • complying with their terms of supervision
  • and reducing their criminal behavior.
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Differences in social connectedness and perceived isolation among rural and urban adults with disabilities. (ICPSR 215021)

Released/updated on: 2025-04-01
Geographic coverage: United States
Time period: 2017-01-01--2018-01-01
Background: Social isolation has been compared to smoking in terms of risk to public health. Some groups are at particularly high risk for these feelings, including people with disabilities and rural residents. Few studies have considered the potentially compounding effects of disability status and rural residency. Objective: To evaluate how reported satisfaction with social participation and perceived isolation relate to the health of rural and urban people with disabilities, and to consider whether number of disabilities, living arrangement, and employment status were associated with differences in reported satisfaction with social participation and perceived isolation. Methods: This observational, cross-sectional analysis utilized data from working-age adults with disabilities (n ¼ 1246) collected by the Collaborative on Health Reform and Independent Living (CHRIL). Results: There were significant associations between reported health and measures of satisfaction with social participation and perceived isolation (all ps < .001). Increased number of disability issues, not being employed, and living with at least one other person were associated with reduced satisfaction with social participation (ps < .01), and number of disability issues and not being employed were associated with increased perceived isolation (ps < .01). Urban residents reported feeling more isolated (ps < .05) and there were multiple predictor x geographic residency (rural versus urban) interactions. Conclusion: These results underscore the importance of considering geography as a factor in understanding satisfaction with social participation and perceived isolation and how these factors relate to health in people with disabilities.
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National Neighborhood Data Archive (NaNDA): Hospitals by Census Tract and ZCTA, 2023 (ICPSR 222901)

Released/updated on: 2025-03-14
Geographic coverage: United States
Time period: 2023-01-01--2023-12-31
This dataset contains measures of the number and density of hospitals per United States Census Tract or ZIP Code Tabulation Area (ZCTA) in 2023. The dataset includes four separate files for four different geographic areas (GIS shapefiles from the United States Census Bureau). The four geographies include:
  • Census Tract 2010
  • Census Tract 2020
  • ZIP Code Tabulation Area (ZCTA) 2010
  • ZIP Code Tabulation Area (ZCTA) 2020
Information about which dataset to use can be found in the Usage Notes section of the user guide.A curated version of this dataset is available on ICPSR at https://doi.org/10.3886/ICPSR39378.v1 
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National Neighborhood Data Archive (NaNDA): Ophthalmologists by Census Tract and ZCTA, United States, 1990-2021 (ICPSR 222263)

Released/updated on: 2025-03-10
Geographic coverage: United States
Time period: 1990-01-01--2021-12-31
Description This dataset contains measures of the number and density of ophthalmologists per United States Census Tract or ZIP Code Tabulation Area (ZCTA) from 1990 through 2021. The dataset includes four separate files for four different geographic areas (GIS shapefiles from the United States Census Bureau). The four geographies include:
  • Census Tract 2010
  • Census Tract 2020 
  • ZIP Code Tabulation Area (ZCTA) 2010
  • ZIP Code Tabulation Area (ZCTA) 2020 
Information about which dataset to use can be found in the Usage Notes section of this document.
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Comparing Primary Care Clinician-Focused Versus Team-Based Implementation of Advance Care Planning: Protocol for a Cluster-Randomized Control Trial, United States and Canada, 2019-2022 (ICPSR 39033)

Released/updated on: 2025-01-07
Geographic coverage: Canada, United States
Time period: 2019-01-01--2022-12-31

For people with serious chronic conditions, healthcare that defaults to all available treatments without considering patient preferences risks harms that may exceed benefits. Advance care planning (ACP) has the potential to align healthcare with what is important to patients and maximize quality of life. While primary care is where most people receive most of their care, engaging patients in ACP is not routine in primary care given competing demands and limited resources. Primary care clinicians, patients, and families agree that it is preferred to make plans before there is a medical crisis. The research team's goal was to make ACP routine in primary care and to "move it upstream" so that it included improving the quality of the last years of life as well as respecting wishes for end of life care.

This study included a comparative effectiveness trial of team-based versus individual clinician-focused ACP in primary care practices. The research team adapted Ariadne Labs' Serious Illness Care Program (SICP) and aimed to determine if a team approach produces better patient outcomes and explore factors influencing implementation of ACP across practices.

Seven practice-based research networks (PBRNs) in the United States and Canada randomized their primary care practices to team-based or individual clinician-focused versions of SICP. Team members and clinicians completed training, and implementation was supported through practice facilitation. Consented patient participants completed a baseline survey after initial conversations and follow-up surveys at 6 and 12 months later. Forty practices (21 team, 19 clinician) completed training and referred patients to the study. Half of the practices were rural, 80 percent were family medicine, and 33 percent were medical residency training sites. 535 healthcare staff completed training. Both arms trained primary care providers; the team arm also trained nurses, medical assistants, and other roles. 1,321 patients and care partners were referred; and 917 consented and were enrolled (455 from team practices, 462 from clinician). Data from 802 patients were included in the primary analyses. Qualitative implementation data was collected during practice facilitation and from practice interviews.

This collection includes quantitative data collected from primary care practices (DS1) and team members and clinicians (DS2) from study sites located in the United States.

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HERO Registry: Creating and Using a Community Registry to Understand the Experiences of Healthcare Workers and Their Communities during COVID-19, United States, 2020-2022 (ICPSR 39153)

Released/updated on: 2024-12-03
Geographic coverage: United States
Time period: 2020-01-01--2022-12-31

To study the impact of COVID-19 pandemic on frontline healthcare workers in the United States over time, the Healthcare Worker Exposure Response and Outcomes (HERO) Registry was created in 2020 to form a virtual research community of healthcare workers (and later, their family members and community members). The registry was intended for healthcare workers interested in completing research studies related to the COVID-19 pandemic and its impacts on their lives. Observational data were collected at various timepoints between April 2020 and September 2022 via web-based questionnaires available on the HERO Registry online portal.

This collection contains 39 sets of data from over 50,000 HERO Registry members. Datasets represent separate surveys with distinct survey designs and sampling criteria. Surveys focused on health history, workplace experiences, COVID-19 exposure, social support, mental health, and the respondents' willingness to remain in or leave the healthcare field. Datasets 24 through 39 represent "hot topics" such as vaccines, vaccine willingness and uptake, childcare and school arrangements, and staffing shortages. Datasets for registry administration, respondent demographics, and survey eligibility criteria are also included.

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Veterans' Pain Care Organizational Improvement Comparative Effectiveness (VOICE) Study, United States, 2017-2022 (ICPSR 38893)

Released/updated on: 2024-12-03
Geographic coverage: United States
Time period: 2017-10-01--2022-04-30

The Veterans' Pain Care Organizational Improvement Comparative Effectiveness (VOICE) Study was a 12-month pragmatic randomized comparative effectiveness trial. The target population was primary care patients (n=820) at ten sites within the United States Department of Veterans Affairs (VA) Health Care System with moderate to severe pain despite treatment with moderate or high-dose long-term opioid treatment (LTOT). The study's primary aim was to compare integrated pain team (IPT) versus pharmacist telecare collaborative management (TCM) for improving pain and reducing opioid use among patients with chronic pain prescribed LTOT. In TCM, a lower-intensity intervention, a clinical pharmacist provides care management, structured symptom monitoring, and pain medication optimization. In IPT, a higher-intensity intervention, an interdisciplinary clinician team delivers care using a multi-modal approach to target biopsychosocial contributors to pain and disability with emphasis on non-drug therapies and behavioral activation sessions.

All participants were randomized to receive either IPT or TCM interventions for 12 months. Common elements of both interventions included individualized pain care and opioid taper recommendations tailored to patient preferences and treatment goals. Outcomes were assessed every three months and the primary time point for comparisons was 12 months. The primary outcome was pain, assessed with the Brief Pain Inventory (BPI) total score, with secondary outcomes as opioid daily dose and quality of life measures.

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Chitwan Valley Family Study: Changing Social Contexts and Family Formation, Nepal, 1995-2019 (ICPSR 4538)

Released/updated on: 2024-10-16
Geographic coverage: Nepal
Time period: 1995-01-01--2019-12-31

The Chitwan Valley Family Study (CVFS) is a comprehensive family panel study of individuals, households, and communities in the Chitwan Valley of Nepal. The study was initially designed to investigate the influence of changing community and household contexts on population outcomes such as marital and childbearing processes. Over time, the goals of the study expanded to investigate family dynamics, intergenerational influences, child health, migration, labor force participation, attitudes and beliefs, mental health, agricultural production, environmental change, and many other topics. The data include full life histories for more than 10,000 individuals, tracking and interviews with all migrants, continuous measurement of community change, over 25 years of demographic event registry, and many other data collections. For additional information regarding the Chitwan Valley Family Study, please visit the Chitwan Valley Family Study Website. A Data Guide for this study is available as a web page and for download.

Principal Investigators

  • William G. Axinn, University of Michigan
  • Dirgha Ghimire, University of Michigan
  • Jordan Smoller, Massachusetts General Hospital
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Comparing Ways to Monitor Patients with COVID-19 at Home (COVID Watch), New Jersey, Pennsylvania, Delaware, 2020-2021 (ICPSR 38951)

Released/updated on: 2024-10-02
Geographic coverage: United States, Delaware, New Jersey, Pennsylvania
Time period: 2020-03-01--2021-11-30

The University of Pennsylvania Health System (Penn Medicine) developed COVID Watch, an automated text message-based, remote monitoring program with 24/7 clinical support. Remote outpatient monitoring of patients with COVID-19 became needed because patients with SARS-CoV-2 infection can decline rapidly and unpredictably, and because of their own limited capacity to manage acute symptoms and concerns about staff safety, office-based outpatient practices often redirect patients with confirmed or suspected COVID-19 to hospitals. As a result, emergency departments (EDs) and hospitals became overwhelmed during surge periods of high community incidence rates and prevalence. Remote monitoring has the potential to facilitate ED- and hospital-level care for patients who require it while supporting access to care for patients who can safely remain at home.

This study compared outcomes for patients enrolled in COVID Watch with those of patients who were eligible to enroll but received usual care, with the hypothesis that enrollment in COVID Watch was associated with reduced mortality. The present research examined whether patients with COVID-19 who were enrolled in COVID Watch experienced better health outcomes compared with usual care (Aim 1) and whether augmenting COVID Watch with at-home monitoring of SpO2 (blood-oxygen saturation) improves patient outcomes (Aim 2).

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Examining rural-urban disparities in perceived need for health care services among adults with disabilities (ICPSR 208783)

Released/updated on: 2024-08-30
Geographic coverage: United States
Time period: 2019-10-01--2020-01-31
Purpose: The purpose of this study is to parse out differences between unmet need and perceived need for health care services among rural and urban adults with disabilities in the United States. While unmet need focuses primarily on environmental factors such as access to health insurance or provider availability, perceived need relates to personal choice. This distinction between unmet and perceived need is largely ignored in prior studies, but relevant to public health strategies to improve access and uptake of preventive care.Methods: Using Wave 2 data from the National Survey on Health and Disability, we explored rural and urban differences in unmet and perceived health care needs among working-age adults with disabilities for acute and preventive services. Findings: Although we found no significant differences in unmet needs between rural and urban respondents, we found that perceived needs for dental care and mental health counseling varied significantly across geography. Using logistic regression analysis and controlling for observable participant characteristics, we found that respondents living in noncore counties relative to metropolitan counties were more likely to report not needing dental care (OR 1.89, p = 0.028), and not needing mental health counseling services (OR 2.15, p ≤ 0.001).Conclusion: These findings suggest additional study is warranted to understand perceived need for preventive services and the levers for addressing rural disparities.
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Combined Generations Wave 1 and TransPop surveys, United States, 2016-2018 (ICPSR 38421)

Released/updated on: 2024-08-29
Geographic coverage: United States
Time period: 2016-01-01--2018-12-31

This collection includes a combined dataset of the Generations study wave 1 (baseline) survey and the TransPop study transgender survey. The two studies have many overlapping variables, and they examined topics such as respondents' health outcomes and behaviors, experiences with discrimination, identity, and transition-related experiences. Data from these studies were merged to allow for analysis of the combined LGBT populations. This dataset has also been reweighted to be representative of these populations.

The complete Generations study data (baseline, wave 2, and wave 3 survey data) can be found under study number 37166, and the complete TransPop study data (transgender and cisgender survey data) can be found under study number 37938. For detailed information on the Generations and TransPop studies, including related publications, please refer to their respective DSDR/ICPSR study pages.

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Tsogolo la Thanzi (TLT): Verbal Autopsy Data, Malawi, 2009-2019 [Healthy Futures] (ICPSR 39181)

Released/updated on: 2024-08-19
Geographic coverage: Balaka, Malawi, Africa
Time period: 2009-01-01--2019-12-31

Tsogolo la Thanzi (TLT) was a longitudinal study in Balaka, Malawi designed to examine how young people navigate reproduction in an AIDS epidemic. Tsogolo la Thanzi means "Healthy Futures" in Chichewa, Malawi's most widely spoken language. This particular study contains the Verbal Autopsy data providing information on 36 respondents who died over the study period (2009-2019). These 36 individuals were known to be deceased through recruitment efforts to re-interview the person during a subsequent wave of data collection. However, not all groups of respondents were re-interviewed in 2012, 2015, and 2019. Therefore, the total number of deaths from the original sample is potentially more than what is reported in this particular study. The 36 verbal autopsy cases in this study represent known deaths, and should not be interpreted as an inventory of all deaths that occurred.

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References to Evidence-Based Program Registry Websites for Behavioral Health in U.S. State Government Statutes and Regulations, [United States], 2011-2020 (ICPSR 39058)

Released/updated on: 2024-07-08
Geographic coverage: United States
Time period: 2011-01-01--2020-12-31
U.S. state governments have the responsibility to regulate and license behavioral health care interventions, such as for addiction and mental illness, with increasing emphasis on evidence-based programs (EBPs). A serious obstacle to this is lack of clarity or agreement about what constitutes "evidence-based." This study's purpose was to determine the extent to which and in what contexts web-based Evidence-Based Program Registries (EBPRs) are referenced in state government statutes and regulations ("mandates") concerning behavioral health care. The study employed the Westlaw Legal Research Database to search for 30 known EBPR websites relevant to behavioral health care within the statutes and regulations of all 50 states. Questions of interest included prevalence of EBPR references in statutes and regulations, purpose of references to EBPRs, context of references to EBPRs, and service areas represented by the mandate.
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Improving Trial Design and Analysis for Treatments for Rare Diseases [Methods Study], 2020 (ICPSR 39118)

Released/updated on: 2024-06-10
Time period: 2020-01-01--2020-12-31

A rare disease is one that affects fewer than 200,000 people in the United States. Because few people have these diseases, clinical studies on treatments can be hard to conduct. One way to study rare disease treatments is with an small n sequential multiple assignment randomized trial (snSMART) study.

snSMART studies have two stages. In the first stage, researchers assign patients to a treatment by chance. In the second stage, patients may stay with the same treatment or switch treatments. Patients stay on the same treatment if it's working well. If the treatment isn't working, researchers assign patients by chance to a new treatment.

snSMARTs can help researchers learn more from a smaller number of patients than a standard clinical study. But most current methods for analyzing snSMARTs use data only from the first stage, which can lead to inefficient results.

In this project, the research team developed and tested new methods that use data from both stages to analyze snSMARTs. The team compared results from the new methods to actual treatment effectiveness to see:

  • Bias, or whether results are too high or too low
  • Efficiency, or how big the difference is between the results and actual treatment effectiveness

This study contains two supplementary documentation files. There is no data included in this release.

External data

Analysis of Longitudinal Claims Databases (R1 Part A): Aging Trajectories of Chronic Disease, Psychological Morbidity, and Mortality, United States (ICPSR 38530)

Released/updated on: 2024-05-29
Geographic coverage: United States

The Analysis of Longitudinal Claims Databases (R1 Part A): Aging Trajectories of Chronic Disease, Psychological Morbidity, and Mortality, United States is the first of a three-part project that examined claims data from Medicare, Medicaid, and/or Optum databases to explore aging trajectories, use of preventative services, and healthcare outcomes for individuals with several types of physical disabilities.

There is a well-established interrelationship between access to healthcare and the age-related co-occurrence of two or more chronic conditions, adverse health events, and cost of care among people with a physical disability (PWPD). However, the extent to which health outcomes and healthcare costs interact with a wide range of social factors, including type and depth of insurance coverage, has received little attention. There is also scarce evidence regarding the aging trajectories of chronic diseases and psychological conditions among PWPD, as well as how these factors contribute to healthcare costs and adverse health events, including early mortality. Three specific aims guide this research investigation:

  1. Determine the longitudinal trends of cardiometabolic diseases, the age-related co-occurrence of two or more chronic conditions (or multimorbidity), diagnosed physiological conditions, and musculoskeletal diseases common among individuals diagnosed with a physical disability ordered by type of insurance (public vs. private).
  2. Identify the independent and joint contributions of medical factors (e.g., age, multimorbidity, disease severity, etc.) and social and environmental factors (e.g., income, education, and insurance) on adverse health events (including mortality), healthcare use, and costs.
  3. Quantify how changes in medical and social factors predict or facilitate adverse health events and healthcare costs among individuals with specific diagnoses of physical disabilities.
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Measuring Chronic Pain Impact (ICPSR 198049)

Released/updated on: 2024-02-27
Geographic coverage: United States
Time period: 2021-08-31--2021-11-02, 2022-09-22--2022-10-01
Millions of research dollars have been spent on studies of the effectiveness of interventions for chronic pain, and there is now a growing list of nonpharmacologic therapies being recommended, especially for patients with chronic low back pain. However, to extract the full value of this research investment, including the answer to the question ‘which therapy is most effective?’, we must be able to directly compare results across studies; a task which is hampered by two things: the use of different outcome measures and the lack of a stratification scheme which would allow the case mix of baseline samples to be balanced. This project addresses these challenges by developing crosswalks and/or links between the PROMIS-29 and the legacy measures commonly used in these studies, and by further developing and creating cut-points for a proposed chronic pain impact stratification scheme.          
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Chronic Illness and Caregiving, 2000: [United States] (ICPSR 3402)

Released/updated on: 2024-02-14
Geographic coverage: United States
Time period: 2000-01-01--2000-12-31
The objective of this survey, which interviewed individuals from the general public, chronically ill persons, and informal caregivers, was threefold: (1) to assess public awareness of chronic care issues and the level of support for chronic care policy initiatives, (2) to examine experiences and needs of chronically ill Americans concerning health care and other assistance, and (3) to evaluate experiences and needs of informal caregivers. Questions to the general public addressed awareness of the availability of supportive and housing services for the chronically ill, knowledge about coverage for long-term care, concerns about the future of the chronic care delivery system, support for policy initiatives such as tax credits for the chronically ill and caregivers, and support for a policy that would ensure pharmaceutical coverage in Medicare. Chronically ill interviewees responded to questions about access to and experience with chronic care and other health care services, experiences with and needs for clinical services coordination, experiences with and needs for social supports and interventions, and adjustment skills and knowledge (e.g., what were their needs for learning how to live with chronic conditions). Questions for informal caregivers focused on experiences with caregiving (e.g., for whom they provided care, how many hours they devoted to caregiving per week, and living arrangements), balance between caregiving and other areas of their lives, experiences with and needs for respite care, and availability of social supports for caregivers.
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Evaluating the Impact and Effectiveness of New Connections: Increasing Diversity of Robert Wood Johnson Foundation Programming, June 2011 - February 2012 (ICPSR 34311)

Released/updated on: 2024-02-14
Geographic coverage: United States
Time period: 2011-06-01--2012-02-29

The Robert Wood Johnson Foundation (RWJF) began its New Connections Program in 2005, motivated by the belief that high-quality research and evaluation that addresses the nation's health demands diverse perspectives. As of December 2011, New Connections has supported the career development of 100 grantees: junior researchers and mid-career professionals from historically disadvantaged and underrepresented communities. In addition, the program has provided overall support to a larger network of over 1,200 scholars from these same communities. This study comprises data from three surveys that were conducted as part of the evaluation of New Connections: the Grantee Process Survey, Grantee Network Survey, and Larger Network Survey.

The Grantee Process Survey interviewed New Connections grantees about their accomplishments and participation in professional activities, confidence in various abilities before and after they became grantees, satisfaction with support from New Connections, the extent to which New Connections improved their knowledge and skills, and the extent to which they agreed or disagreed that the program affected their ability to obtain their current position or made them more influential in their work settings.

The Grantee Network Survey questioned New Connections grantees about the persons from whom they would seek support, guidance, or information; expertise; work with; or communicate with about what they needed to be successful in their current positions and to advance in their careers (e.g., to get tenure, a promotion, or a leadership position).

The Larger Network Survey interviewed members of the larger network about their participation in New Connections activities, their interactions with New Connections grantees and the larger network, the extent to which the program improved their knowledge and skills, the extent to which they agreed or disagreed that New Connections affected their ability to obtain their current position, and their satisfaction with the program.

There is a separate data file for each survey. Together with the survey responses, all three files include information from the program's administrative records, such as the highest degree earned, institution type, field of work, race and Hispanic ethnicity, first generation college student status, and low income status. In addition, the Grantee Process Survey data file contains variables derived from the respondents' curriculum vitae that show the number of grantee presentations and publications before, during, and after the New Connection grants.

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Business Leaders' Views on American Health Care, 1990 (ICPSR 6032)

Released/updated on: 2024-02-14
Geographic coverage: United States
Time period: 1990-07-05--1990-12-17
This survey interviewed business leaders from Fortune 500 companies (chief executive officers, presidents, and chairmen of the board) on health care issues. Its purpose was to assess their views on the need for change in the health care system, the directions that such changes should take, and the role that business should play in the health care system. In addition, respondents were asked if their companies self-insured for insurance benefits or purchased coverage from a health insurance company, if there was an executive-level effort at their companies to decide where they stood on national health policy issues, and if they believed their companies would be able to bring their health costs under control over the next year or two. For each company, the data include information on the number of employees, the percentage of total payroll used for health care benefits, the percentage of sales in health-related business, and the company type (financial services and insurance, sales and diversified services, utilities and transportation, durable goods, nondurable goods, and forestry/mining/petroleum).
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National Survey of Primary Care Physicians and Nurse Practitioners, 2012 (ICPSR 36050)

Released/updated on: 2024-02-14
Geographic coverage: United States
Time period: 2011-11-23--2012-04-09
The focus of this survey was the role of nurse practitioners and physicians in primary care and the likely effects on the health care system of expanding the supply of nurse practitioners and their scope of practice. Topics of the survey include satisfaction with career, daily roles and responsibilities, perceived affects of increasing the supply of NPs, attitudes toward NP scope of practice, information on clinical practice services and revenue, and respondent demographics and income.
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Finding Quality Doctors: How Americans Evaluate Provider Quality in the United States, 2014 (ICPSR 36055)

Released/updated on: 2024-02-14
Geographic coverage: United States
Time period: 2014-05-27--2014-06-18
This survey examined perceptions of health care provider quality in the United States. To that end, the survey respondents were asked what they thought was the most important factor that makes a high quality doctor or other health care provider and the most important factor that makes a poor quality one (hereafter "provider" denotes "doctor or other health care provider"). Additionally, respondents were asked about the importance of various provider attributes in their choice of a provider; whether there is a relationship between the quality and cost of health care; exposure to and trust in information about the quality of providers from various sources; and cost versus quality when choosing providers. Other topics covered by the survey include self-reported health, utilization of health care, quality of health care received and health insurance coverage. Background variables collected by the survey include age, sex, race, Hispanic ethnicity, marital status, education, employment status and political identification.
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Privately Insured in America: Opinions on Health Care Costs and Coverage, 2014 (ICPSR 36176)

Released/updated on: 2024-02-14
Geographic coverage: United States
Time period: 2014-07-22--2014-09-03
This survey interviewed adults ages 18-64 with private health insurance - health insurance received through an employer or union or purchased directly from an insurance company or through a state or federal marketplace or exchange -- about the characteristics of their health care insurance coverage, their health care utilization and their views on the price of health care, how health costs impact their health care utilization decisions and the extent to which other aspects of their lives are affected by health care costs. Other topics covered by the survey include satisfaction with one's current health insurance plan, problems experienced with health care under the current plan and the importance of various plan attributes in choosing a health plan. The survey also collected information on overall health status and socio-demographic characteristics, such age, sex, marital status, education, employment status, income, race and Hispanic origin.
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Project HealthDesign: BreathEasy - A Personal Health Record Application For Adults With Asthma, 2011-2012 (ICPSR 36027)

Released/updated on: 2024-02-14
Geographic coverage: Virginia, Richmond
Time period: 2011-01-01--2012-12-31
Asthma is a chronic illness that affects more than 23 million adults in the United States. In addition to respiratory symptoms associated with the disease, individuals with asthma are also more likely to experience depression and anxiety. The BreathEasy team designed a mobile application built on the latest clinical guidelines for treatment and self-monitoring for patients with asthma. Patients with asthma used the application on smartphones to capture and report observations of daily living (ODLs) such as use of controller and rescue medications, asthma symptoms (including peak flow rates), depression and anxiety symptoms, encounters with asthma triggers, physical activity levels (including accelerometer based data), sleeping problems, and smoking. Clinicians used a web based dashboard with simple analysis and visualization tools that allowed them to quickly view the patients' data, evaluate their health statuses, and communicate changes in treatment or monitoring. This data collection contains the ODL data recorded by the patients.
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Project HealthDesign: Chronology.MD - Personal Health Record Applications for Patients With Crohn's Disease, 2011-2012 (ICPSR 36028)

Released/updated on: 2024-02-14
Geographic coverage: San Francisco, California
Time period: 2011-01-01--2012-12-31
More than 600,000 people in the United States live with Crohn's disease, a chronic and progressive disorder of the digestive system which is most prevalent in young adults ages 18-35. The Chronology.MD team developed two mobile applications to help patients who have Crohn's disease create visually aided narratives of their condition and responses to treatment. Crohn's patients used the Chronology app to enter observations of daily living (e.g., levels of abdominal pain, energy, and stress); enter clinical data (levels of B-12, C-Reactive Protein, HTC and iron in the blood); automatically upload weight data using Withings scales; and automatically uploaded sleep and exercise data from Fitbit body monitors. The Crohnograph app enabled patients to view time trends for tracked ODLs and other data, explore possible associations among them, and show the data visualizations to their health care provider. The providers could document information from the visualization and conversations in clinical notes. This data collection comprises the data collected using the Chronology app from the patients who participated in the Chronology.MD study.
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Project HealthDesign: Estrellita - An Application for Tracking Observations of Daily Living Related to Preterm Infants, 2011-2012 (ICPSR 36029)

Released/updated on: 2024-02-14
Geographic coverage: Orange County, California
Time period: 2011-01-01--2012-12-31
More than 12 percent of all United States births each year are preterm. To improve the care of these infants, which have an increased risk of serious developmental and chronic health problems, the Estrellita team created a mobile phone application to monitor premature infants and their caregivers. This app allows caregivers to better understand the infant care process and to more easily interact with clinicians about themselves and the care of their infants. Caregivers used the Estrellita app to record their own stress levels and mood and their infants' observations of daily living (ODL) such as baby fussiness, diapering, weight, and bonding activities with the babies. In addition, the app allowed the caregivers to track clinical appointments, review the ODL data, and send and receive text messages from clinicians.
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Community Tracking Study Household Survey, 1998-1999, and Followback Survey, 1998-2000: [United States] (ICPSR 3199)

Released/updated on: 2024-02-14
Geographic coverage: United States
Time period: 1998-01-01--2000-12-31
This collection comprises the second round of the Community Tracking Study (CTS) Household Survey and the second round of the CTS Followback Survey. The CTS, sponsored by the Robert Wood Johnson Foundation, is a national study designed to track changes in the health care system and their effects on care delivery and individuals. Fifty-one metropolitan areas and nine nonmetropolitan areas were randomly selected to form the core of the CTS and to be representative of the nation as a whole. As in the first round of the Household Survey (COMMUNITY TRACKING STUDY HOUSEHOLD SURVEY, 1996-1997, AND FOLLOWBACK SURVEY, 1997-1998: [UNITED STATES] (ICPSR 2524)), the second round of the Household Survey was administered to households in the 60 CTS sites and to a supplemental national sample of households. Respondents provided information about household composition and demographic characteristics, health insurance coverage, use of health services, unmet health care needs, out-of-pocket expenses for health care, usual source of care, patient trust and satisfaction, last visit to a medical provider, health status and presence of chronic health conditions, risk behaviors and smoking, and employment, earnings, and income. The purpose of the Followback Survey was to obtain detailed information on private health insurance coverage reported in the Household Survey. It was administered to the health plans and other organizations (managed care organizations, third-party administrators, employer or union plans, and employers) that offered or administered the respondents' comprehensive private health insurance policies. Information on private health insurance policies collected by the Followback Survey includes product type, gatekeeping, consumer cost sharing, provider payment methods, and coverage of mental health and/or substance abuse services.
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Community Tracking Study Household Survey, 1996-1997, and Followback Survey, 1997-1998: [United States] (ICPSR 2524)

Released/updated on: 2024-02-14
Geographic coverage: United States
Time period: 1996-07-01--1997-07-31, 1997-10-01--1998-08-31
This data collection comprises two components of the Community Tracking Study (CTS), the Household Survey and the Followback Survey. The CTS, sponsored by the Robert Wood Johnson Foundation, is a national study designed to track changes in the health care system and their effects on care delivery and individuals. Central to the design of the CTS is its community focus. Sixty sites (51 metropolitan areas and 9 nonmetropolitan areas) were randomly selected to form the core of the CTS and to be representative of the nation as a whole. The Household Survey was administered to households in the 60 CTS sites and to a supplemental national sample of households. At the beginning of each interview, a household informant was identified and queried about the composition of the household. With this information, individuals in the household were grouped into family insurance units (FIU). An FIU reflects family groupings typically used by insurance carriers. It includes an adult household member, his or her spouse, if any, and any dependent children 0-17 years of age (or 18-22 years of age if a full-time student). Family informants, selected from each FIU in the household, provided information on health insurance coverage, health care use, usual source of care, and the general health of all persons in the FIU. These informants also provided information on family income and out-of-pocket expenses for health care, as well as employment, race, and Hispanic origin for all adult FIU members. Each adult in the household, including the FIU informants, responded through a self-response module to questions regarding unmet health care needs, patient trust, satisfaction with physician choice, limitations in daily activities, smoking behaviors, and last doctor visit. In FIUs with more than one child under 18, only one child was randomly selected for inclusion in the survey. The family informant responded on behalf of the child regarding unmet needs and satisfaction with physician choice. The adult family member who took this child to his or her last doctor visit responded to questions about the visit. The Followback Survey was designed to obtain detailed information on private health insurance coverage reported in the Household Survey. It was administered to health plans and other organizations that offered or administered the comprehensive private health insurance policies covering Household Survey respondents in the 60 CTS sites. Information on private health insurance policies collected by the Followback Survey includes product type, gatekeeping, consumer cost sharing, provider payment methods, and coverage of mental health and/or substance abuse services.
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