Welcoming Remarks. Commissioner Brill
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- Hilary Whitehead
- 8 years ago
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1 Welcome
2 Welcoming Remarks Commissioner Brill
3 Health Data Flows Latanya Sweeney Chief Technologist, FTC
4 Transparency Establishes thedatamap.org
5 Disclaimer The views and opinions in this presentation represent my own and are not necessarily those of the U.S. Federal Trade Commission. These views are for the benefit of public discourse and public education, and are not necessarily an opinion regarding any position I may take on related issues decided by the FTC.
6 Transparency Establishes Trust
7 Establishes Distrust
8 You, the Patient Physician, Hospital thedatamap.org
9 Life Insurance Company You, the Patient Physician, Hospital Employer (Yours, Spouse s) Accreditation Payer (Insurer) Consulting Physician Pharmacy Law Firms Pharmacy Benefits Manager Vital Statistics Researcher Employer s Wellness Program
10 Life Insurance Company Blood & Tissue Personal Transport Retirement & Disability You, the Patient Physician, Hospital ICU Management Clearing House De-identification Debt Collection Human Resources Mental & Addiction Home Health Care Facility Accreditation Employer Dental/Vision Payer (Insurer) Employee Union SSA Disease Management Online Websites Clinical Lab Consulting Physician Education Pharmacy Pharmacy Benefits Manager Discharge Data Social Services Law & Justice Law Firms Copy&Transport Registries Transcriptio Public Health n Coding Associations Financial Social Support Medical Devices Personal Health Record Employer s Wellness Program Researcher Analytics Media Federal Trade Commission Vital Statistics Prescription Analytics Health IT Licensing CDC Pharmaceutical Company Real Estate Other Government
11 Life Insurance Company Blood & Tissue Personal Transport Retirement & Disability You, the Patient Physician, Hospital ICU Management Clearing House De-identification Debt Collection Human Resources Mental & Addiction Home Health Care Facility Accreditation Employer Dental/Vision Payer (Insurer) Employee Union SSA Disease Management Online Websites Clinical Lab Consulting Physician Education Pharmacy Pharmacy Benefits Manager Discharge Data Social Services Law & Justice Law Firms Copy&Transport Registries Transcriptio Public Health n Coding Associations Financial Social Support Medical Devices Personal Health Record Employer s Wellness Program Researcher Analytics Media Federal Trade Commission Vital Statistics Prescription Analytics Health IT Licensing CDC Pharmaceutical Company Real Estate Other Government Flows not covered by HIPAA
12 Life Insurance Company Blood & Tissue Personal Transport Retirement & Disability You, the Patient Physician, Hospital ICU Management Clearing House De-identification Debt Collection Human Resources Mental & Addiction Home Health Care Facility Accreditation Employer Dental/Vision Payer (Insurer) Employee Union SSA Disease Management Online Websites Clinical Lab Consulting Physician Education Pharmacy Pharmacy Benefits Manager Discharge Data Social Services Law & Justice Law Firms Copy&Transport Registries Transcriptio Public Health n Coding Associations Financial Social Support Medical Devices Personal Health Record Employer s Wellness Program Researcher Analytics Media Federal Trade Commission Vital Statistics Prescription Analytics Health IT Licensing CDC Pharmaceutical Company Real Estate Other Government
13 33 States Sell or Share Personal Health Data Hooley S and Sweeney L. Survey of Publicly Available State Health Databases. Paper thedatamap.org/states.html
14 Only 3 States Use HIPAA Standards Hooley S and Sweeney L. Survey of Publicly Available State Health Databases. Paper thedatamap.org/states.html
15 Life Insurance Company Blood & Tissue Personal Transport Retirement & Disability You, the Patient Physician, Hospital ICU Management Clearing House De-identification Debt Collection Human Resources Mental & Addiction Home Health Care Facility Accreditation Employer Dental/Vision Payer (Insurer) Employee Union SSA Disease Management Online Websites Clinical Lab Consulting Physician Education Pharmacy Pharmacy Benefits Manager Discharge Data Social Services Law & Justice Law Firms Copy&Transport Registries Transcriptio Public Health n Coding Associations Financial Social Support Medical Devices Personal Health Record Employer s Wellness Program Researcher Analytics Media Federal Trade Commission Vital Statistics Prescription Analytics Health IT Licensing CDC Pharmaceutical Company Real Estate Other Government
16 Life Insurance Company Blood & Tissue Personal Transport Retirement & Disability You, the Patient Physician, Hospital ICU Management Clearing House De-identification Debt Collection Human Resources Mental & Addiction Home Health Care Facility Accreditation Employer Dental/Vision Payer (Insurer) Employee Union SSA Disease Management Online Websites Clinical Lab Consulting Physician Education Pharmacy Pharmacy Benefits Manager Discharge Data Social Services Law & Justice Law Firms Copy&Transport Registries Transcriptio Public Health n Coding Associations Financial Social Support Medical Devices Personal Health Record Employer s Wellness Program Researcher Analytics Media Federal Trade Commission Vital Statistics Prescription Analytics Health IT Licensing CDC Pharmaceutical Company Real Estate Other Government
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20 Washington State Health Database 43% news stories re identified News stories have same information that others know. Employers, Creditors, Family, Friends and Neighbors Sweeney L. Matching Known Patients to Health Records in Washington State Data. Paper thedatamap.org/risks.html
21 Transparency Establishes thedatamap.org
22 A Snapshot of Data Sharing by Select Health and Fitness Apps FTC Staff s Preliminary Observations Jah Juin Jared Ho Sheryl Novick Mobile Technology Unit Federal Trade Commission Christina Yeung Division of Planning and Information Federal Trade Commission
23 DOB Device Model Symptom Searches Age Language Name? CALORIES BURNED Geolocation Weight Hydration Username Gender Carrier Provider MAC
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 o o 26% of the free apps and 40% of the paid apps did not have a privacy policy 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 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:
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:
26 WHO and WHAT? Reconceptualizing the Evidon Study :app : third party
27 Health & Fitness App Snapshot Methodology Twelve apps and two wearables App traffic analysis Mapped the data sets
28 Health & Fitness App Snapshot Limitations One device Only Free Apps Front-end testing only Did not review privacy policies
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30 App Example One app transmitted information to 18 different 3 rd parties. Information included: *Device Information *Device & 3 rd Party Identifiers *Consumer Specific Identifiers *Workout/Route Information *Diet Information :app : third party : developer
31 :app : third party
32 Observation #1 18 third parties received Device Specific Identifiers such as: *Device ID *MAC address *IMEI :app : third party
33 Observation #2 14 third parties received Consumer Specific Identifiers such as: *Username *Name * Address :app : third party
34 Observation #3 22 third parties received additional information about consumers such as: *Exercise Information *Meal/Diet Information *Medical/Symptom Search Information *Zip code *Geolocation *Gender :app : third party
35 Summary of Observations Health and fitness apps collect and transmit to third parties sensitive information about our bodies and our habits. The 12 apps tested transmitted information to 76 different third parties. This information included: Device Information; Consumer specific identifiers; Unique device IDs capable of allowing 3 rd parties to track users devices across apps; Unique 3 rd party IDs capable of allowing 3 rd parties to track users devices across apps; and Consumer information such as exercise routine, dietary habits, and symptom searches. There are significant privacy implications where health routines, dietary habits, and symptom searches are capable of being aggregated using identifiers unique to that consumer.
36 Panel Discussion Christopher R. Burrow, M.D., EVP Medical Affairs, Humetrix Joseph Lorenzo Hall, Chief Technologist, Center for Democracy & Technology Sally Okun, RN, MMHS, Vice President of Advocacy, Policy & Patient Safety, PatientsLikeMe Heather Patterson, Postdoctoral Research Fellow, New York University Joy Pritts, Chief Privacy Officer, Office of the National Coordinator for Health Information Technology, Department of Health & Human Services
37 Mobile Anytime/Anywhere Access to Personal Health Records 36
38 Access to e Health Records is a Right Ensured by HIPAA Important tools like Electronic Health Records (EHRs) and Personal Health Records (PHRs) will make it easier, safer, and faster for you to get access to your health information and stay engaged.
39 ibluebutton Display & Aggregation of TRICARE, VA, Medicare Blue Button and EMR Records (Epic, Cerner, Allscripts etc ) Humetrix 2014
40 Patient Generated Data Health Care Proxy and Prior Discharge Summaries Imported into ibluebutton
41 Consumer Controlled Mobile Health Record Access & Exchange EHRs from diverse sources (e.g. hospitals, payers, HCP groups) 40
42 ibluebutton for Medicare Beneficiaries: Three Years of Medical History in Patients Hands for their Safety From Blue Button to From a 300 page Blue Button ASCII text claims record to a mobile longitudinal health record available at every Point of Care
43 Providers Transmit Records to their Patients Unique ibluebutton Address using the Secure Federal Direct Transport Standard ibluebutton App generates a Direct Address for each Profile Humetrix 2014
44 ibluebutton: Display of Medicare, EMR, VA and TRICARE records with Real Time Aggregated View 43 Humetrix 2014
45 Patient Generated Data Medication and Condition Annotations and Privacy Settings Humetrix 2014
46 ibluebutton Privacy Policy and ONC PHR Model Privacy Notice
47 Panel Discussion Christopher R. Burrow, M.D., EVP Medical Affairs, Humetrix Joseph Lorenzo Hall, Chief Technologist, Center for Democracy & Technology Sally Okun, RN, MMHS, Vice President of Advocacy, Policy & Patient Safety, PatientsLikeMe Heather Patterson, Postdoctoral Research Fellow, New York University Joy Pritts, Chief Privacy Officer, Office of the National Coordinator for Health Information Technology, Department of Health & Human Services
December 2014. Federal Employees Health Benefits (FEHB) Program Report on Health Information Technology (HIT) and Transparency
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