Tsogolo La Thanzi 3 (TLT-3), Malawi, 2019 [Healthy Futures] (ICPSR 39882)
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.
MiBEST - Preferences and predictors driving opioid-involved polysubstance use profiles and trajectories: Implications for improving care (ICPSR 247225)
Effectiveness of Peer Navigation to Link Released HIV-Positive Jail Inmates to HIV Care (LINK LA), Los Angeles, California, 2012-2016 (ICPSR 39789)
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.
National Neighborhood Data Archive (NaNDA): Healthcare Services by Census Tract and ZCTA, United States, 1990-2022 (ICPSR 209050)
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).
Centering Disabled User Experience Replication Data (ICPSR 247251)
- `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
Hearing for Communication and Resident Engagement (HearCARE), Pennsylvania, 2021-2023 (ICPSR 39345)
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).
Preserving Kidney Function in Children with Chronic Kidney Disease (PRESERVE), United States, 2009-2024 (ICPSR 39689)
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.
Examining the Institutional Medical Mistrust Scale (IMMS) in the COVID-19 Pandemic, United States, 2022 (ICPSR 39469)
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.
National Neighborhood Data Archive (NaNDA): Essential Workers by Census Tract and ZIP Code Tabulation Area, United States, 2018-2022 (ICPSR 302178)
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.
Improving Self-Care of Informal Caregivers of Adults with Heart Failure, United States, 2019-2024 (ICPSR 39524)
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.
Analysis of Risk Protection from Health Insurance Using PSID Data from the United States, 1999–2019 (ICPSR 301650)
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.
National Profile of Local Health Departments, [United States], 2022 (ICPSR 39351)
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)
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:
- 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?
- 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.
Improving Transition from Acute to Post-Acute Care following Traumatic Brain Injury (BRITE), United States, 2018-2022 (ICPSR 39094)
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.
Improving Family-Centered Pediatric Trauma Care: The Standard of Care Versus the Virtual Pediatric Trauma Center, California, 2020-2022 (ICPSR 39210)
Evaluating the Comparative Effectiveness of Telemedicine in Primary Care: Learning from the COVID-19 Pandemic, New York, 2021 (ICPSR 39346)
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.
Public Perceptions of AI in Healthcare Based on Reddit Posts (2020–2025) (ICPSR 231282)
The Irish Longitudinal Study on Ageing (TILDA), Wave 3, 2014-2015 (ICPSR 37106)
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.
The Irish Longitudinal Study on Ageing (TILDA), Wave 4, 2016 (ICPSR 38670)
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.
The Irish Longitudinal Study on Ageing (TILDA), Wave 5, 2018 (ICPSR 38674)
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.
The Irish Longitudinal Study on Ageing (TILDA), COVID-19 Study, 2020 (ICPSR 38681)
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.
Replication package for "Institutions, local agency, and allegiance: healthcare provision in colonial India" (ICPSR 229044)
The Irish Longitudinal Study on Ageing (TILDA), Wave 1, 2009-2011 (ICPSR 34315)
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.
Interactive Computer-Assisted Recovery Enabler (ICARE): Treatment Support Tool for Substance-Using Offenders, North Carolina, 2022-2023 (ICPSR 39317)
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.
Differences in social connectedness and perceived isolation among rural and urban adults with disabilities. (ICPSR 215021)
National Neighborhood Data Archive (NaNDA): Hospitals by Census Tract and ZCTA, 2023 (ICPSR 222901)
- Census Tract 2010
- Census Tract 2020
- ZIP Code Tabulation Area (ZCTA) 2010
- ZIP Code Tabulation Area (ZCTA) 2020
National Neighborhood Data Archive (NaNDA): Ophthalmologists by Census Tract and ZCTA, United States, 1990-2021 (ICPSR 222263)
- Census Tract 2010
- Census Tract 2020
- ZIP Code Tabulation Area (ZCTA) 2010
- ZIP Code Tabulation Area (ZCTA) 2020
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)
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.
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)
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.
Veterans' Pain Care Organizational Improvement Comparative Effectiveness (VOICE) Study, United States, 2017-2022 (ICPSR 38893)
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.
Chitwan Valley Family Study: Changing Social Contexts and Family Formation, Nepal, 1995-2019 (ICPSR 4538)
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
Comparing Ways to Monitor Patients with COVID-19 at Home (COVID Watch), New Jersey, Pennsylvania, Delaware, 2020-2021 (ICPSR 38951)
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).
Examining rural-urban disparities in perceived need for health care services among adults with disabilities (ICPSR 208783)
Combined Generations Wave 1 and TransPop surveys, United States, 2016-2018 (ICPSR 38421)
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.
Tsogolo la Thanzi (TLT): Verbal Autopsy Data, Malawi, 2009-2019 [Healthy Futures] (ICPSR 39181)
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.
References to Evidence-Based Program Registry Websites for Behavioral Health in U.S. State Government Statutes and Regulations, [United States], 2011-2020 (ICPSR 39058)
Improving Trial Design and Analysis for Treatments for Rare Diseases [Methods Study], 2020 (ICPSR 39118)
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.
Analysis of Longitudinal Claims Databases (R1 Part A): Aging Trajectories of Chronic Disease, Psychological Morbidity, and Mortality, United States (ICPSR 38530)
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:
- 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).
- 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.
- 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.
Measuring Chronic Pain Impact (ICPSR 198049)
Chronic Illness and Caregiving, 2000: [United States] (ICPSR 3402)
Evaluating the Impact and Effectiveness of New Connections: Increasing Diversity of Robert Wood Johnson Foundation Programming, June 2011 - February 2012 (ICPSR 34311)
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.