Increasingly, consumers are taking a more active role in managing and generating their own health data. For example, consumers are researching their health conditions and diagnosing themselves online. Consumers are also uploading their information into personal health records and apps that allow them to manage and analyze their data, and utilizing connected health and fitness devices that regularly collect information about them and transmit this information to other entities.
The movement of health data outside the traditional medical provider context has many potential benefits; however, it also raises potential privacy concerns. The seminar will address questions such as:
What types of websites, products, and services are consumers using to generate and control their health data, and how are consumers using them?
Who are the companies behind these websites, products, and services, what are their business models, and what does the current marketplace look like?
How can consumers benefit from these companies’ websites, products, and services?
What actions are these companies taking to protect consumers’ privacy and security?
What do consumers expect from these companies regarding privacy and security protections?
Do consumers differentiate between these companies and those that offer traditional medical products and services that are covered by HIPAA?
What restrictions, if any, do advertising networks and others impose on tracking of health data?
9. Pharmacy
Payer (Insurer)
Law
Firms
Pharmacy Benefits Manager
Employer (Yours, Spouse’s)
Employer’s Wellness Program
Life Insurance Company
Accreditation
Vital Statistics
Researcher
Consulting Physician
You, the Patient Physician, Hospital
10. Transcriptio
n
Pharmacy
CDC
Pharmaceutical Company
Pharmacy Benefits Manager
Analytics
ICU Management
Researcher
Consulting Physician
Health IT
Other GovernmentFederal Trade Commission
You, the Patient Physician, Hospital
Real Estate
Media
Discharge Data
Education
Accreditation
Law & Justice
Prescription Analytics
Law
Firms
Care Facility
Clearing House
De-identification
Coding
Licensing
Vital Statistics
Registries
Social Services
Public Health
Clinical Lab
Copy&Transport
Associations
Debt Collection
Employer’s Wellness Program
Life Insurance Company
Personal Health Record
Online Websites
Medical Devices
Financial
Blood & Tissue
Employer
Personal Transport
Home Health
Retirement & Disability
Social Support
Human Resources
Disease Management
Mental & Addiction
Dental/Vision
Payer (Insurer)
SSA
Employee Union
11. Transcriptio
n
Pharmacy
CDC
Pharmaceutical Company
Pharmacy Benefits Manager
Analytics
ICU Management
Researcher
Consulting Physician
Health IT
Other Government
Federal Trade Commission
You, the Patient Physician, Hospital
Real Estate
Media
Discharge Data
Education
Accreditation
Law & Justice
Prescription Analytics
Law
Firms
Care Facility
Clearing House
De-identification
Coding
Licensing
Vital Statistics
Registries
Social Services
Public Health
Clinical Lab
Copy&Transport
Associations
Debt Collection
Employer’s Wellness Program
Life Insurance Company
Personal Health Record
Online Websites
Medical Devices
Financial
Blood & Tissue
Employer
Personal Transport
Home Health
Retirement & Disability
Social Support
Human Resources
Disease Management
Mental & Addiction
Dental/Vision
Payer (Insurer)
SSA
Employee Union
Flows not covered by HIPAA
12. Transcriptio
n
Pharmacy
CDC
Pharmaceutical Company
Pharmacy Benefits Manager
Analytics
ICU Management
Researcher
Consulting Physician
Health IT
Other GovernmentFederal Trade Commission
You, the Patient Physician, Hospital
Media
Education
Accreditation
Law & Justice
Prescription Analytics
Law
Firms
Care Facility
Clearing House
De-identification
Coding
Licensing
Vital Statistics
Registries
Social Services
Public Health
Clinical Lab
Copy&Transport
Associations
Debt Collection
Employer’s Wellness Program
Life Insurance Company
Personal Health Record
Online Websites
Medical Devices
Blood & Tissue
Employer
Personal Transport
Home Health
Retirement & Disability
Social Support
Human Resources
Disease Management
Dental/Vision
Payer (Insurer)
SSA
Employee Union
Real Estate
Financial
Mental & Addiction
Discharge Data
15. Transcriptio
n
Pharmacy
CDC
Pharmaceutical Company
Pharmacy Benefits Manager
Analytics
ICU Management
Researcher
Consulting Physician
Health IT
Other GovernmentFederal Trade Commission
You, the Patient Physician, Hospital
Real Estate
Media
Discharge Data
Education
Accreditation
Law & Justice
Prescription Analytics
Law
Firms
Care Facility
Clearing House
De-identification
Coding
Licensing
Vital Statistics
Registries
Social Services
Public Health
Clinical Lab
Copy&Transport
Associations
Debt Collection
Employer’s Wellness Program
Life Insurance Company
Personal Health Record
Online Websites
Medical Devices
Financial
Blood & Tissue
Employer
Personal Transport
Home Health
Retirement & Disability
Social Support
Human Resources
Disease Management
Mental & Addiction
Dental/Vision
Payer (Insurer)
SSA
Employee Union
16. Transcriptio
n
Pharmacy
CDC
Pharmaceutical Company
Pharmacy Benefits Manager
Analytics
ICU Management
Researcher
Consulting Physician
Health IT
Other GovernmentFederal Trade Commission
You, the Patient Physician, Hospital
Real Estate
Media
Discharge Data
Education
Accreditation
Law & Justice
Prescription Analytics
Law
Firms
Care Facility
Clearing House
De-identification
Coding
Licensing
Vital Statistics
Registries
Social Services
Public Health
Clinical Lab
Copy&Transport
Associations
Debt Collection
Employer’s Wellness Program
Life Insurance Company
Personal Health Record
Online Websites
Medical Devices
Financial
Blood & Tissue
Employer
Personal Transport
Home Health
Retirement & Disability
Social Support
Human Resources
Disease Management
Mental & Addiction
Dental/Vision
Payer (Insurer)
SSA
Employee Union
24. Privacy Rights Clearinghouse
Mobile Health and Fitness Applications and Information Privacy‐ July 2013
• Examined 43 free and paid health and fitness apps
o Wearables not included
• Traffic analysis and privacy policy review
• Findings:
o 26% of the free apps and 40% of the paid apps did not have a privacy policy
o 39% of the free apps and 30% of the paid apps sent data to someone not
disclosed by the developer either in-app or in any privacy policy they found
o 13% of the free apps and 10% of the paid apps encrypted all data
connections between the app and the developer’s website.
• Conclusion:
“Our research brought us to the conclusion that, from a privacy perspective,
mobile health and fitness applications are not particularly safe when it comes to
protecting user privacy.”
Source: https://www.privacyrights.org/mobile-medical-apps-privacy-consumer-report.pdf
25. Evidon
A Healthy Data Set‐ September 2013
• Tested 20 health and fitness apps
• Found the presence of 70 third parties
• “These companies are typically advertising and
analytics companies, who attempt to better match
advertisements to users who will buy; and who work
to help app developers increase functionality and
usability, respectively.”
•
Source: http://www.evidon.com/blog/healthy-data-set