Cargando…
Data, Data Everywhere, but Access Remains a Big Issue for Researchers: A Review of Access Policies for Publicly-Funded Patient-Level Health Care Data in the United States
INTRODUCTION: High quality research regarding treatment effectiveness, quality, and value is critical for improving the U.S. health care system. Recognition of this has led federal and state officials to better leverage existing data sources such as medical claims and survey data, but access must be...
Autores principales: | , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
AcademyHealth
2016
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4827788/ https://www.ncbi.nlm.nih.gov/pubmed/27141517 http://dx.doi.org/10.13063/2327-9214.1204 |
_version_ | 1782426509019971584 |
---|---|
author | Doshi, Jalpa A. Hendrick, Franklin B. Graff, Jennifer S. Stuart, Bruce C. |
author_facet | Doshi, Jalpa A. Hendrick, Franklin B. Graff, Jennifer S. Stuart, Bruce C. |
author_sort | Doshi, Jalpa A. |
collection | PubMed |
description | INTRODUCTION: High quality research regarding treatment effectiveness, quality, and value is critical for improving the U.S. health care system. Recognition of this has led federal and state officials to better leverage existing data sources such as medical claims and survey data, but access must be balanced with privacy concerns. METHODS: We reviewed and catalogued data access policies for a selection of publicly-funded federal and state datasets to investigate how such policies may be promoting or limiting research activities. RESULTS: We found significant variation in data access policies across federal agencies and across state agencies, including variation for multiple datasets available from the same agency. We also observed numerous indirect hurdles to use of data, including complex data use application procedures, high user fees, and prolonged wait times for data delivery. CONCLUSIONS: Policy makers and data owners should consider making changes to data access policies to maximize the utility and availability of these valuable resources. |
format | Online Article Text |
id | pubmed-4827788 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2016 |
publisher | AcademyHealth |
record_format | MEDLINE/PubMed |
spelling | pubmed-48277882016-05-02 Data, Data Everywhere, but Access Remains a Big Issue for Researchers: A Review of Access Policies for Publicly-Funded Patient-Level Health Care Data in the United States Doshi, Jalpa A. Hendrick, Franklin B. Graff, Jennifer S. Stuart, Bruce C. EGEMS (Wash DC) Articles INTRODUCTION: High quality research regarding treatment effectiveness, quality, and value is critical for improving the U.S. health care system. Recognition of this has led federal and state officials to better leverage existing data sources such as medical claims and survey data, but access must be balanced with privacy concerns. METHODS: We reviewed and catalogued data access policies for a selection of publicly-funded federal and state datasets to investigate how such policies may be promoting or limiting research activities. RESULTS: We found significant variation in data access policies across federal agencies and across state agencies, including variation for multiple datasets available from the same agency. We also observed numerous indirect hurdles to use of data, including complex data use application procedures, high user fees, and prolonged wait times for data delivery. CONCLUSIONS: Policy makers and data owners should consider making changes to data access policies to maximize the utility and availability of these valuable resources. AcademyHealth 2016-03-31 /pmc/articles/PMC4827788/ /pubmed/27141517 http://dx.doi.org/10.13063/2327-9214.1204 Text en All eGEMs publications are licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License http://creativecommons.org/licenses/by-nc-nd/3.0/ |
spellingShingle | Articles Doshi, Jalpa A. Hendrick, Franklin B. Graff, Jennifer S. Stuart, Bruce C. Data, Data Everywhere, but Access Remains a Big Issue for Researchers: A Review of Access Policies for Publicly-Funded Patient-Level Health Care Data in the United States |
title | Data, Data Everywhere, but Access Remains a Big Issue for Researchers: A Review of Access Policies for Publicly-Funded Patient-Level Health Care Data in the United States |
title_full | Data, Data Everywhere, but Access Remains a Big Issue for Researchers: A Review of Access Policies for Publicly-Funded Patient-Level Health Care Data in the United States |
title_fullStr | Data, Data Everywhere, but Access Remains a Big Issue for Researchers: A Review of Access Policies for Publicly-Funded Patient-Level Health Care Data in the United States |
title_full_unstemmed | Data, Data Everywhere, but Access Remains a Big Issue for Researchers: A Review of Access Policies for Publicly-Funded Patient-Level Health Care Data in the United States |
title_short | Data, Data Everywhere, but Access Remains a Big Issue for Researchers: A Review of Access Policies for Publicly-Funded Patient-Level Health Care Data in the United States |
title_sort | data, data everywhere, but access remains a big issue for researchers: a review of access policies for publicly-funded patient-level health care data in the united states |
topic | Articles |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4827788/ https://www.ncbi.nlm.nih.gov/pubmed/27141517 http://dx.doi.org/10.13063/2327-9214.1204 |
work_keys_str_mv | AT doshijalpaa datadataeverywherebutaccessremainsabigissueforresearchersareviewofaccesspoliciesforpubliclyfundedpatientlevelhealthcaredataintheunitedstates AT hendrickfranklinb datadataeverywherebutaccessremainsabigissueforresearchersareviewofaccesspoliciesforpubliclyfundedpatientlevelhealthcaredataintheunitedstates AT graffjennifers datadataeverywherebutaccessremainsabigissueforresearchersareviewofaccesspoliciesforpubliclyfundedpatientlevelhealthcaredataintheunitedstates AT stuartbrucec datadataeverywherebutaccessremainsabigissueforresearchersareviewofaccesspoliciesforpubliclyfundedpatientlevelhealthcaredataintheunitedstates |