Bill Overview
Title: Health Data Use and Privacy Commission Act
Description: This bill temporarily establishes a commission with members appointed through the Government Accountability Office to study and report on issues related to protecting individual privacy while advancing the use of personal health information. The study must address, for example, the use of personal health information by federal, state, and local governments for public health activities and the various statutory and regulatory requirements that apply to such information. In addition, the bill restricts the commission's use and disclosure of any personal health information or proprietary business and financial information obtained in conducting the study. The commission must report its findings, conclusions, and recommendations (as well as those of any dissenting members of the commission) for balancing privacy protections and the appropriate use of personal health information. The commission terminates 30 days after submitting its final report.
Sponsors: Sen. Cassidy, Bill [R-LA]
Target Audience
Population: Individuals concerned with the use and privacy of their personal health data
Estimated Size: 331000000
- The bill addresses issues related to protecting individual privacy while facilitating the use of personal health information.
- The use of personal health information by governments for public health activities is a focus.
- A commission is tasked with studying the balance between privacy protection and personal health information use.
- The study's findings may influence future legislative or regulatory actions affecting privacy and health data use.
Reasoning
- The policy directly affects individuals concerned about the use and privacy of health data, a significant portion of the U.S. population.
- For most, the impacts will be in the form of increased oversight and recommendations that might lead to future privacy protections, rather than immediate changes.
- The budget constraints imply limits on the scope and size of the commission's operations, which may not result in direct changes to individual wellbeing immediately.
Simulated Interviews
software engineer (San Francisco, CA)
Age: 34 | Gender: female
Wellbeing Before Policy: 8
Duration of Impact: 3.0 years
Commonness: 6/20
Statement of Opinion:
- It's good to see more attention on privacy issues, especially with the increasing reliance on digital health data.
- I hope the commission will result in stronger governance and security standards.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 8 |
| Year 2 | 9 | 8 |
| Year 3 | 8 | 8 |
| Year 5 | 9 | 8 |
| Year 10 | 9 | 8 |
| Year 20 | 8 | 8 |
healthcare administrator (Austin, TX)
Age: 52 | Gender: male
Wellbeing Before Policy: 7
Duration of Impact: 5.0 years
Commonness: 8/20
Statement of Opinion:
- The balance of privacy and utility in health data is critical for both operational efficiency and patient trust.
- I am cautious about the impact any recommendations might have on our current systems.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 8 | 7 |
| Year 3 | 7 | 7 |
| Year 5 | 7 | 7 |
| Year 10 | 8 | 7 |
| Year 20 | 8 | 7 |
graduate student (Chicago, IL)
Age: 28 | Gender: female
Wellbeing Before Policy: 6
Duration of Impact: 2.0 years
Commonness: 10/20
Statement of Opinion:
- I am interested to see how the study influences data usage norms.
- Privacy is key, but so is the ability to use data for research.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 6 |
| Year 2 | 7 | 6 |
| Year 3 | 6 | 6 |
| Year 5 | 6 | 6 |
| Year 10 | 6 | 6 |
| Year 20 | 6 | 6 |
public health official (Seattle, WA)
Age: 45 | Gender: other
Wellbeing Before Policy: 7
Duration of Impact: 4.0 years
Commonness: 5/20
Statement of Opinion:
- Public health relies on data use; however, it's good to see efforts to protect personal privacy.
- I anticipate some of our current practices will be under scrutiny.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 7 | 7 |
| Year 3 | 8 | 7 |
| Year 5 | 7 | 7 |
| Year 10 | 8 | 7 |
| Year 20 | 7 | 7 |
retired (New York, NY)
Age: 61 | Gender: male
Wellbeing Before Policy: 6
Duration of Impact: 3.0 years
Commonness: 15/20
Statement of Opinion:
- I'm always concerned about who has access to my health information.
- If the study leads to better protective measures, that would be beneficial.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 6 | 6 |
| Year 2 | 6 | 6 |
| Year 3 | 6 | 6 |
| Year 5 | 7 | 6 |
| Year 10 | 6 | 6 |
| Year 20 | 6 | 6 |
small business owner (Miami, FL)
Age: 39 | Gender: female
Wellbeing Before Policy: 8
Duration of Impact: 2.0 years
Commonness: 7/20
Statement of Opinion:
- Having clear guidelines on data privacy could help in setting policies for my clients.
- I'm hopeful for clarity but skeptical about rapid change.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 8 |
| Year 2 | 8 | 8 |
| Year 3 | 8 | 8 |
| Year 5 | 8 | 8 |
| Year 10 | 8 | 8 |
| Year 20 | 8 | 8 |
policy analyst (Denver, CO)
Age: 30 | Gender: male
Wellbeing Before Policy: 7
Duration of Impact: 4.0 years
Commonness: 4/20
Statement of Opinion:
- This commission could provide useful insights for future policy formulation.
- While it's a step forward, the execution will determine its impact.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 8 | 7 |
| Year 3 | 7 | 7 |
| Year 5 | 8 | 7 |
| Year 10 | 8 | 7 |
| Year 20 | 8 | 7 |
digital privacy advocate (Los Angeles, CA)
Age: 24 | Gender: female
Wellbeing Before Policy: 9
Duration of Impact: 6.0 years
Commonness: 3/20
Statement of Opinion:
- Privacy is at the forefront of my concerns, and more oversight is welcome.
- I hope this study results in actionable steps rather than just discussions.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 9 | 9 |
| Year 2 | 9 | 9 |
| Year 3 | 10 | 9 |
| Year 5 | 9 | 9 |
| Year 10 | 10 | 9 |
| Year 20 | 9 | 9 |
academic researcher (Boston, MA)
Age: 55 | Gender: male
Wellbeing Before Policy: 8
Duration of Impact: 5.0 years
Commonness: 4/20
Statement of Opinion:
- The commission's work is crucial but must consider diverse stakeholder interests.
- I am cautiously optimistic that this will lead to robust recommendations.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 8 | 8 |
| Year 2 | 9 | 8 |
| Year 3 | 8 | 8 |
| Year 5 | 9 | 8 |
| Year 10 | 9 | 8 |
| Year 20 | 8 | 8 |
nurse (Phoenix, AZ)
Age: 42 | Gender: female
Wellbeing Before Policy: 7
Duration of Impact: 2.0 years
Commonness: 9/20
Statement of Opinion:
- Ensuring patient data privacy is paramount, and clarity in regulations would help.
- I expect minimal immediate changes but hope for long-term benefits.
Wellbeing Over Time (With vs Without Policy)
| Year | With Policy | Without Policy |
|---|---|---|
| Year 1 | 7 | 7 |
| Year 2 | 7 | 7 |
| Year 3 | 7 | 7 |
| Year 5 | 7 | 7 |
| Year 10 | 8 | 7 |
| Year 20 | 7 | 7 |
Cost Estimates
Year 1: $20000000 (Low: $15000000, High: $25000000)
Year 2: $5000000 (Low: $3000000, High: $7000000)
Year 3: $0 (Low: $0, High: $0)
Year 5: $0 (Low: $0, High: $0)
Year 10: $0 (Low: $0, High: $0)
Year 100: $0 (Low: $0, High: $0)
Key Considerations
- The commission must ensure balanced recommendations that warrant both data privacy and accessibility for public health benefits.
- Operational costs are short-term but potentially pivotal in influencing future privacy-related policy making.
- The findings of the commission could have a significant impact on laws governing health data privacy in the U.S.