Non-Government Health Data Alternatives

As government health websites and datasets are removed or restricted, it becomes crucial to find alternative sources of reliable health data. Below is a comprehensive list of non-governmental organizations, research institutions, and independent data repositories that provide valuable health-related information. This list will be continually updated as new resources become available.

Understanding the Impact of Government Data Removal

On a recent Friday night, Dr. Gordon Schiff, the quality and safety director at Harvard Medical School, received an email informing him that one of his academic papers had been removed from a federal website. The paper, titled Multiple Missed Opportunities for Suicide Risk Assessment, highlighted suicide risk factors, including gender and LGBTQ identity. This removal is part of a broader effort by the U.S. government to restrict public access to health data related to diversity and equity.

According to reports, nearly 8,000 U.S. government websites were taken down over a weekend, affecting access to vital public health information. The U.S. Department of Agriculture has also directed officials to remove climate change content from public websites. The uncertainty surrounding these removals raises concerns about the availability of health data and its impact on public awareness and research.

Why Non-Governmental Data Matters

While government databases have traditionally been a primary source for health data, non-governmental organizations (NGOs), universities, and independent research institutions also maintain comprehensive datasets. These sources are critical for journalists, researchers, and policymakers who rely on accurate health information.

Reliable Non-Governmental Health Data Sources

1. ProPublica

Website: ProPublica

ProPublica, a nonprofit investigative journalism organization, provides several valuable datasets, including:

• Nonprofit Explorer: Access millions of tax returns filed by tax-exempt organizations, including nonprofit hospitals.
• Nursing Home Inspect: Interactive and searchable CMS data on nursing homes.
• Dollars for Docs: Track industry payments to doctors from August 2013 to December 2018.

2. Association of Health Care Journalists (AHCJ)

Website: AHCJ

AHCJ maintains several useful databases, including:

• Hospital Inspections: Federal hospital inspection reports.
• Hospital Finances: Nonprofit hospital financial reports.
• State Insurance Guide: Information on state health insurance policies.

3. KFF (Kaiser Family Foundation)

Website: KFF

KFF is a leading source of health policy research, polling, and news, covering topics like:

• COVID-19
• HIV/AIDS
• Medicaid and Medicare
• Affordable Care Act

4. State Medicaid Fact Sheets

Website: Commonwealth Fund

These fact sheets provide state-specific Medicaid data, including:

• Coverage statistics for Medicaid and CHIP programs
• Medicaid’s role in rural healthcare
• Behavioral health access for young people

5. Congressional District Health Dashboard

Website: NYU Grossman School of Medicine

Provides health measures at the congressional district level, including:

• Social and economic health determinants
• Health outcomes
• Comparison tools for district-level health insights

6. Health Care Cost Institute (HCCI)

Website: HCCI

Analyzes healthcare costs, spending, and access trends for commercially insured populations.

7. Institute for Health Metrics and Evaluation (IHME)

Website: IHME

Conducts global health research, covering topics such as:

• Air pollution
• Vaccine coverage
• Maternal health

8. Rural Hospital Data

Website: National Rural Health Association

Reports on federal policy impacts on rural healthcare providers.

9. The United Network for Organ Sharing (UNOS)

Website: UNOS

Maintains the national transplant waiting list and organ donation data.

10. Harvard Dataverse

Website: Harvard Dataverse

Offers publicly available health and medical datasets from global researchers.

Additional Resources

• Investigative Reporters & Editors (IRE) maintains over 120 health datasets from federal sources.
• The Internet Archive has preserved several CDC datasets before removals occurred.
• Johns Hopkins University offers public health data and resources for journalists and researchers.

Conclusion

While the removal of government health data presents a challenge, numerous non-governmental sources continue to provide crucial health information. Journalists, researchers, and the public can rely on these independent resources to stay informed and drive meaningful health discussions.