Betty C. Jung's Web site

https://www.bettycjung.net/Hcquality1.htm

Data Standards

HC Quality Index Page Data & Standards HC Quality Standards HC Quality Issues

Consumer Health Info Index

Data Quality

Best practices for government agencies to publish data: lessons from COVID-19 Lancet.com 4/2024

Be concerned about how apps collect, share health data, expert says 10/2017

State of Data Quality? Worsening Marketingcharts.com

Big Data & Machine Learning

Graphic source: JVP170174supp1_prod.pdf

Big Data and Machine Learning in Health Care 3/2018

Companies Collect a Lot of Data, But How Much Do They Actually Use? 8/2019

Everything big data claims to know about you could be wrong - To understand human health and behavior, researchers would do better to study individuals, not groups 6/2018

Demographic Data Standards

Office of Management and Budget updated standards require only one question for race and ethnicity instead of the previous two-step question format. (April 2024)

Graphic source: https://www.ctdata.org/blog/changes-to-the-federal-standards-race-ethnicity

Graphic source: https://www.census.gov/data-tools/demo/race/MREAD_1790_2010.html

Changes to the federal standards for how race and ethnicity data are collected and reported 4/2024

Measuring Race and Ethnicity Across the Decades: 1790-2010 Mapped to 1997 U.S. Office of Management and Budget Classification Standards Census.gov

What Updates to OMB’s Race/Ethnicity Standards Mean for the Census Bureau 4/8/2024

Electronic Data Exchange/Standards

Graphic source: http://www.mckinsey.com/business-functions/digital-mckinsey/our-insights/big-data-the-next-frontier-for-innovation

Himss.Org

International Standard Date and Time Notation Thanks Martins Liberts

Regional Health eDecisions: A Guide to Connecting Health Information Exchange in Primary Care AHRQ.gov

Electronic Medical Records

Graphic source: https://www.healthyagingpoll.org/report/june-2018-report-logging-using-patient-portals-access-health-information

Bloated patient records are filled with false information, thanks to copy-paste 6/2023

June 2018 Report: Logging in - Using Patient Portals to Access Health Information

An Interactive Preventive Care Record A Handbook for Using Patient-Centered Personal Health Records To Promote Prevention AHRQ

It’s time for individuals — not doctors or companies — to own their health data 11/2021

Logging in: Using Patient Portals to Access Health Information 6/2018

Patients Take a Bite of Prevention Apple with Web!based Interactive Personal Health Record AHRQ

Genetic Databases

Protecting Privacy When Genetic Databases Are Commercialized 1/2025

Health Data Breaches

USA Today Health Data Breach Search 11/2022

Analysis: Health Data Breach Tally Trends 6/2018

Facebook Is Receiving Sensitive Medical Information from Hospital Websites 6/2022

U.S. Department of Health and Human Services Office for Civil Rights Breach Portal: Notice to the Secretary of HHS Breach of Unsecured Protected Health Information Breaches Affecting 500 or More Individuals

Health Data Organizations

Data Interchange Standards Association

National Council of Prescription Drug Programs Telecommunication Standard Format

National Uniform Claims Committee

Health Data Resources

Guroo.com

Annotated Data Bibliography

Biostatistics & Statistics Resources

Data for Health Learning What Works RWJF.org 4/2015

HCUPnet AHRQ

HCUP Reports

HCUP Statistical Briefs

Health System Measurement Project HHS.gov

Home Health Care CDC/NCHS

Personal Data for the Public Good RWJF.org 3/2014

Public Health Data Resources

Public Health Software

State Ambulatory Surgery Databases (SASD) AHRQ

State Emergency Department Databases (SEDD) AHRQ

State Inpatient Databases (SID) AHRQ

United States Health Information Knowledgebase (USHIK) AHRQ.gov

Health Data Standards

New blockchain ledger will let you sell personal healthcare data 9/2018

Data Quality: Improvements to Count Correction Efforts Could Produce More Accurate Census Data GAO.gov

Emergency Department Data Evaluation HCUP/AHRQ 2005

HCPCS Release and Code Sets CMS.HHS.gov

HCUP Methods Series Reports

Health Indicators Sortable Stats

ICF International Disease Classification of Functional Disability & Health

ICF - Search

Indicators for Chronic Disease Surveillance CDC MMWR 9/2004

Reproductive Health Indicators and Reproductive Health Atlas

National Committee on Vital and Health Statistics (USHHS)

Nemsis.org

Nemisis.org Publications

Public Health Data Standards Consortium

Registries for Evaluating Patient Outcomes: A User's Guide: 2nd Edition AHRQ.gov

Systematized Nomenclature of Human and Veterinary Medicine (SNOMED)

Who owns your medical data? Most likely not you.

Health Data Standards - ICD-11

Graphic source: https://www.who.int/health-topics/international-classification-of-diseases

ICD-11 for Mortality and Morbidity Statistics (Version : 04 / 2019) WHO.int

ICD-11: classifying disease to map the way we live and die

ICD-11 for Mortality and Morbidity Statistics (2018) WHO.int

ICD-11 Coding Tool WHO.int

ICD-11 Update 10/2017

Health Data Standards - ICD-10

2019 release of ICD-10-CM

Best free ICD 10 apps for iPhone and Android imedicalapps.com

About ICD-10 CMS.gov

International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) CDC.gov

SNOMED CT to ICD-10-CM Map NIH.gov

Information for Cancer Registrars Cancer.gov

Findacode.com ICD-10

Free Online Searchable ICD-9

History of ICD CDC

Provider Resources CMS.gov

Health Data Standards - AHRQ Quality Indicators and Resources

AHRQ Quality Indicators Home Page

Healthcare Cost and Utilization Project (HCUP)

Hospital-Acquired Conditions CMS.gov

The Value of Hospital Discharge Databases AHRQ May 2005

Health Insurance Portability and Accountability Act (HIPAA) - Government Sites

NIST Updates Guidance for Health Care Cybersecurity. Revised draft publication aims to help organizations comply with HIPAA Security Rule. 7/2022

CDC & DHHS - HIPAA Privacy Rule and Public Health - Guidance from CDC and the U.S. Department of Health and Human Services

CDC & DHHS - HIPAA Privacy Rule and Public Health - Guidance from CDC and the U.S. Department of Health and Human Services - May 2, 2003 Supplement

Implementing the Health Insurance Portability and Accountability Act (HIPAA) Security Rule: A Cybersecurity Resource Guide 7/2022 NIST.gov

DHHS - Privacy Related Issues

Health Services Research and the HIPAA Privacy Rule NIH

HIPAA Privacy Rule and Disclosures of Information Relating to Reproductive Health Care 6/2022

Office for Civil Rights - Privacy of Health Records

Protecting the Privacy and Security of Your Health Information When Using Your Personal Cell Phone or Tablet 6/2022

HIPAA-Related Sites (Non-government)

Accredited Standards Committee

EXPLAINER: Data privacy concerns emerge after Roe decision 6/2022

HIPAA and Disasters: What Emergency Professionals Need to Know 8/2016

HIPAA - Designated Standard Maintenance Organization

Washington Publishing Co (WPC) - Reference documents

Medicaid Data & Resources

Medicaid at a Glance HHS.gov

Medicare Data & Resources

Avoid Medicare Fraud Claims by Coding Correctly Physicianpractice.com

Proposed Changes for Calendar Year 2014 Physician Quality Programs And The Value Based Payment Modifier CMS.gov 7/2013

Synthetic Data

Synthetic Data and Health Privacy 12/2024

Wearable Device Data

An example scenario with an employee with HIV who does not wish to share their HIV status with their employer but this information is divulged unintentionally through data sharing with the Stroke Prevention Study.

Benefits and risks of sharing data from wearable devices

Graphic source for above 2 graphics: https://www.thelancet.com/journals/landig/article/PIIS2589-7500(22)00234-5/fulltext

Does deidentification of data from wearable devices give us a false sense of security? A systematic review 2/2023

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PUBLISHED ON THE WEB: May 17, 2003
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