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PHRs, Health 2.0 and the Impact of  Social Media on Health Care American Health Lawyers Association Annual Meeting – July 1, 2009	 Robert L. CoffieldFlaherty, Sensabaugh & Bonasso, PLLCGerald “Jud” E. DeLossMinneapolis, Minnesota
PHR Defined “A tool for collecting, tracking and sharing important, up-to-date information about an individual’s health or the health of someone in their care” American Health Information Management Association ("AHIMA") and American Medical Informatics Association ("AMIA")
HITECH Definition “An electronic record of PHR identifiable health information . . . on an individual that can be drawn from multiple sources and that is managed, shared, and controlled by or primarily for the individual”
PHR 1.0 “First generation” PHRs Stand-alone PHRs Require patients to gather and enter their own information Tethered PHRs Provided by a health plan, provider, or employer sponsor who populates the PHR with information
PHR 2.0 Not merely a data collection application  Platform for the electronic aggregation and storage of health information Foundation for various applications Personal Health Information Networks – part of NHIN
Impact of PHRs Comprehensive shift in the way health information is used, maintained, and stored Impact on means and methods for patients, health care providers and payers to maintain, use, control, and disclose health information The current, decentralized system of records maintained by multiple providers and entities at multiple locations Transformed into a centralized record maintenance system that may rely on personal health information networks ("PHINs"), where the PHR serves as the central repository
Data Ownership Who owns health information? The physician? The plan/insurer? The patient?  Under traditional theory, providers own the medical records they maintain, subject to the patient’s rights of access in the information contained in the record
Data Ownership Physicians and other healthcare providers Maintain ownership of health information results in a greater likelihood of maintaining a relationship with the patient Patient who desires to change providers faces difficult task in locating all sources of the health information and requesting that it be transferred to a new provider Rehash in the form of health intake questionnaires, health and physical history examinations, and tests which may not have been adequately communicated
Data Ownership Plan ownership Underwriting and utilization review activities Whether coverage may be extended or whether a pre-existing condition is present Aggregate the data in records or de-identify the information to be used, disclosed, sold, or manipulated for a variety of medical and economical reasons
Data Ownership The PHR Vendor Patient privacy advocates have expressed concern over what use PHR vendors will put to the health information An individual executes an authorization then the vendor may use or disclose the health information in any manner it wishes, since HIPAA would no longer apply New HITECH Act provisions (discussed below) will place limits on these uses but some PHR vendors have taken an initial position that HITECH will not apply because an authorization, among other things, wll relieve them of compliance 
Patient Ownership Patient ownership Results in framework where medical, expense, well-being, and utilization are aligned within one party Patient has an incentive to keep costs to a minimum by avoiding multiple or repetitive procedures Patient has an incentive to or at least the means to monitor their health or well-being by becoming actively involved in the process  Patients have an incentive minimize the unauthorized disclosure or use of their health information
Discrimination Under HIPAA, a group health plan is prohibited from disclosing protected health information to a plan sponsor (typically an employer) for other than plan administration functions In addition, the plan sponsor must certify that it will not use or disclose the protected health information for employment-related actions Health plans, including group health plansoffering PHRs to their enrollees Must ensure that the PHR is either not accessible by the group plan Any health information contained within the PHR which is accessible by the group plan is not shared with the plan sponsor for other than administration functions
Discrimination In addition to HIPAA, employers – and possibly insurers -- must consider the implications  Americans with Disabilities Act (“ADA”) Family and Medical Leave Act (“FMLA”) Similar State laws
HITECH Act Under the HITECH Act, a “personal health record” means “An electronic record of PHR identifiable health information . . . on an individual that can be drawn from multiple sources and that is managed, shared, and controlled by or primarily for the individual.” “PHR identifiable health information” is broadly defined as individually identifiable health information, relying on the HIPAA definitionand “includes, with respect to an individual, information  . . . that is provided by or on behalf of the individual” and “that identifies the individual or with respect to which there is a reasonable basis to believe that the information can be used to identify the individual.”
HITECH Act Breach Notification Requirements The HITECH Act imposes breach notification requirements on PHR vendors and entities that offer products and services through, or that access information from, a PHR Requires each vendor of PHRs, and each designated PHR entity, following the discovery of a breach of security involving unsecured PHR identifiable health information that is in a PHR maintained or offered by such vendor, to provide notice to the Federal Trade Commission (“FTC”) and to any United States citizen or resident whose unsecured health information is acquired by an unauthorized person as a result of the breach  Third party service provider that provides services to a vendor of PHRs or a designated PHR entity in connection with offering or maintaining PHRs (or related products or services) and that “accesses, maintains, retains, modifies, records, stores, destroys, or otherwise holds, uses, or discloses unsecured PHR identifiable health information must notify the PHR vendor (or the designated PHR entity) of a breach of such information, which notice shall include identification of each affected individual
HITECH Act The HITECH Act generally requires that breach notices be sent without unreasonable delay and in no case later than 60 calendar days after discovery Notices to affected individuals generally must be sent by first class mail or may be sent by electronic mail if the individual has expressed a preference for it or, in an urgent situation, by telephone Further, if 10 or more individuals require notification for which there is insufficient or out-of-date contact information, then the notifying entity is required to place a conspicuous posting on its website homepage or place a notice in major print or broadcast media, including major media in geographic areas where the individuals affected by the breach likely reside If the breach involves more than 500 residents of a state (or jurisdiction), a PHR vendor or designated PHR entity also must provide notice to prominent media outlets serving the area A PHR vendor or designated PHR entity must notify the FTC immediately if the breach involves more than 500 individuals. The FTC must notify HHS of such breaches  Violations of the notification requirements related to PHR identifiable health information will be treated as unfair and deceptive acts or practices under the Federal Trade Commission Act
WHAT IS SOCIAL MEDIA?
technology + mobile tools + information + community +  user-generated content + collaboration + social interaction
Do YOU use social media and networks?  Are you LinkedIn?  Do you Facebook? Do you Tweet?  Do you have a blog? Do you read/comment on blogs? Do you use RSS?  Do you regularly look at your online reputation via Google. Are you lifestreaming via Posterous? Do you know what Google Wave is? 11% of American adults use a service like Facebook/Twitter to share updates about themselves or to see the update of others. Pew Internet & American Life Project, Dec. 2008 Where are YOU?
Where Is EVERYONE?  210 Years of Information. Thomas Baekdal  http://www.baekdal.com
A Glimpse Into the State of Social Media 200M active users; 100M log on every day; 30M mobile users If country 5th largest behind China, India, US & Indonesia Average user has 120 friends Fastest growing demographic – over 35 850M photos uploaded each month 1B pieces of content shared each week
A Glimpse Into the State of Social Media Amazing growth! Unique monthly visitors: Jan. 2008: 500,000 Dec. 2008: 4.43 M March 2009: 8 M  Largest user demographic: 35-49  Users more mobile less tethered by technology Twitter replacing RSS and Google search – “real time” results
WEB 2.0 THEN Author-Generated Controlled message Read Static Web Software Release Desktop Computing Central data World Wide Web NOW Dynamic and User-Generated Mental chatter & wisdom of crowd  Read, write and collaborate Participatory Web Software as Service Cloud Computing Decentralized data World Live Web
social media = 297 hospitals + youtube +  facebook + twitter + blogs
social media = doctor + disruptor +  technology + e-visits + health stream
hairball + health data + technology + consumer rights + viral campaign =  e-social media health movement
The WORLD has changed . . .
. . . and so has the HIT landscape.
Without CHANGE . . .
Is it a time for HEALTH CONSUMERISM? Demographics -> “Pig In Python”  (79M Baby Boomers) Rise in chronic illness and complexity of treatment Rising cost of health care and cost shift (employer -> you and me) Governments’ inability to afford uninsured/universal coverage Personalized medicine and genomics The role of PHRs and HEALTH 2.0: Shift to consumer-centric (PHR) model of health data Health consumer is at the center of integrated medical info network New technology tools to treat and reduce/manage chronic condition Mobile health to monitor/feed health data (the desktop to the pocket) Cost transparency/reform to the current reimbursement model Consumerism drives the need  to get information and exercise control over yours/my health and care decisions
WHAT IS HEALTH 2.0? Health 2.0 by Scott Shreeve MD. Creative Commons Attribution, Non-Commercial, Share Alike 2.5 License.Updated on 5/30/07.
Health 2.0 = social software + web/cloud based + light weight tools + consumer/provider collaboration
HOW IS HEALTH 2.0 IMPACTING CONSUMER DRIVEN CARE Health 1.0 Opaque System Passive Patient Physician Authority Insurance Adversary System Generated Health Care Health 2.0 Transparency Engaged Consumer Physician Advisor Health Plan Advocate User Generated Health and Wellness
Personal Health Records
Personal Health Records
PHR and Health Platform
Personalized Health Search
Personalized Physician Search
Collaborative Medical Information Wikis
Physician Social Community
Web BasedPractice Management
Virtual Concierge e-Health Practice
Practice Management Tools
Health Support Community
Disease Communities Capturing & Sharing Outcome Data
Consumer Facing Health Tools
Consumer Facing Health Tools
Personal Health Tools
Health Consumer Tools
Reinvented Health Care Marketplace
Consumer Health Financial Tools
Health Financial Tools
Insurance Coverage/Discovery
Blogging/Med Mal/Privacy
Medical Identity Theft/Privacy
Negative Review/Libel
Contract Law/Libel/Litigation
EHRs/PHRs/HIEs/Malpractice
User Agreement/Contract Law
Health Data Ownership
Privacy/Regulatory
Patient Rights/Privacy
Discovery/Employment
Employment(from 30 ways to lose your job on Twitter)
Legal Ethics
ONE SLIDE PROJECT: Engage With Grace Project
QuestionsRobert L. CoffieldFlaherty, Sensabaugh & Bonasso, PLLCHealth Care Law BlogRCoffield@fsblaw.comTwitter: @bobcoffieldGerald “Jud” E. DeLossMinneapolis, MinnesotaMinnesota Health IT Bloggdeloss@gmail.comTwitter: @gdeloss Slides Available via SlideShare

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PHRs, Health 2.0 and the Impact of Social Media on Health Care

  • 1. PHRs, Health 2.0 and the Impact of Social Media on Health Care American Health Lawyers Association Annual Meeting – July 1, 2009 Robert L. CoffieldFlaherty, Sensabaugh & Bonasso, PLLCGerald “Jud” E. DeLossMinneapolis, Minnesota
  • 2. PHR Defined “A tool for collecting, tracking and sharing important, up-to-date information about an individual’s health or the health of someone in their care” American Health Information Management Association ("AHIMA") and American Medical Informatics Association ("AMIA")
  • 3. HITECH Definition “An electronic record of PHR identifiable health information . . . on an individual that can be drawn from multiple sources and that is managed, shared, and controlled by or primarily for the individual”
  • 4. PHR 1.0 “First generation” PHRs Stand-alone PHRs Require patients to gather and enter their own information Tethered PHRs Provided by a health plan, provider, or employer sponsor who populates the PHR with information
  • 5. PHR 2.0 Not merely a data collection application Platform for the electronic aggregation and storage of health information Foundation for various applications Personal Health Information Networks – part of NHIN
  • 6. Impact of PHRs Comprehensive shift in the way health information is used, maintained, and stored Impact on means and methods for patients, health care providers and payers to maintain, use, control, and disclose health information The current, decentralized system of records maintained by multiple providers and entities at multiple locations Transformed into a centralized record maintenance system that may rely on personal health information networks ("PHINs"), where the PHR serves as the central repository
  • 7. Data Ownership Who owns health information? The physician? The plan/insurer? The patient? Under traditional theory, providers own the medical records they maintain, subject to the patient’s rights of access in the information contained in the record
  • 8. Data Ownership Physicians and other healthcare providers Maintain ownership of health information results in a greater likelihood of maintaining a relationship with the patient Patient who desires to change providers faces difficult task in locating all sources of the health information and requesting that it be transferred to a new provider Rehash in the form of health intake questionnaires, health and physical history examinations, and tests which may not have been adequately communicated
  • 9. Data Ownership Plan ownership Underwriting and utilization review activities Whether coverage may be extended or whether a pre-existing condition is present Aggregate the data in records or de-identify the information to be used, disclosed, sold, or manipulated for a variety of medical and economical reasons
  • 10. Data Ownership The PHR Vendor Patient privacy advocates have expressed concern over what use PHR vendors will put to the health information An individual executes an authorization then the vendor may use or disclose the health information in any manner it wishes, since HIPAA would no longer apply New HITECH Act provisions (discussed below) will place limits on these uses but some PHR vendors have taken an initial position that HITECH will not apply because an authorization, among other things, wll relieve them of compliance 
  • 11. Patient Ownership Patient ownership Results in framework where medical, expense, well-being, and utilization are aligned within one party Patient has an incentive to keep costs to a minimum by avoiding multiple or repetitive procedures Patient has an incentive to or at least the means to monitor their health or well-being by becoming actively involved in the process Patients have an incentive minimize the unauthorized disclosure or use of their health information
  • 12. Discrimination Under HIPAA, a group health plan is prohibited from disclosing protected health information to a plan sponsor (typically an employer) for other than plan administration functions In addition, the plan sponsor must certify that it will not use or disclose the protected health information for employment-related actions Health plans, including group health plansoffering PHRs to their enrollees Must ensure that the PHR is either not accessible by the group plan Any health information contained within the PHR which is accessible by the group plan is not shared with the plan sponsor for other than administration functions
  • 13. Discrimination In addition to HIPAA, employers – and possibly insurers -- must consider the implications Americans with Disabilities Act (“ADA”) Family and Medical Leave Act (“FMLA”) Similar State laws
  • 14. HITECH Act Under the HITECH Act, a “personal health record” means “An electronic record of PHR identifiable health information . . . on an individual that can be drawn from multiple sources and that is managed, shared, and controlled by or primarily for the individual.” “PHR identifiable health information” is broadly defined as individually identifiable health information, relying on the HIPAA definitionand “includes, with respect to an individual, information  . . . that is provided by or on behalf of the individual” and “that identifies the individual or with respect to which there is a reasonable basis to believe that the information can be used to identify the individual.”
  • 15. HITECH Act Breach Notification Requirements The HITECH Act imposes breach notification requirements on PHR vendors and entities that offer products and services through, or that access information from, a PHR Requires each vendor of PHRs, and each designated PHR entity, following the discovery of a breach of security involving unsecured PHR identifiable health information that is in a PHR maintained or offered by such vendor, to provide notice to the Federal Trade Commission (“FTC”) and to any United States citizen or resident whose unsecured health information is acquired by an unauthorized person as a result of the breach Third party service provider that provides services to a vendor of PHRs or a designated PHR entity in connection with offering or maintaining PHRs (or related products or services) and that “accesses, maintains, retains, modifies, records, stores, destroys, or otherwise holds, uses, or discloses unsecured PHR identifiable health information must notify the PHR vendor (or the designated PHR entity) of a breach of such information, which notice shall include identification of each affected individual
  • 16. HITECH Act The HITECH Act generally requires that breach notices be sent without unreasonable delay and in no case later than 60 calendar days after discovery Notices to affected individuals generally must be sent by first class mail or may be sent by electronic mail if the individual has expressed a preference for it or, in an urgent situation, by telephone Further, if 10 or more individuals require notification for which there is insufficient or out-of-date contact information, then the notifying entity is required to place a conspicuous posting on its website homepage or place a notice in major print or broadcast media, including major media in geographic areas where the individuals affected by the breach likely reside If the breach involves more than 500 residents of a state (or jurisdiction), a PHR vendor or designated PHR entity also must provide notice to prominent media outlets serving the area A PHR vendor or designated PHR entity must notify the FTC immediately if the breach involves more than 500 individuals. The FTC must notify HHS of such breaches Violations of the notification requirements related to PHR identifiable health information will be treated as unfair and deceptive acts or practices under the Federal Trade Commission Act
  • 17. WHAT IS SOCIAL MEDIA?
  • 18. technology + mobile tools + information + community + user-generated content + collaboration + social interaction
  • 19. Do YOU use social media and networks? Are you LinkedIn? Do you Facebook? Do you Tweet? Do you have a blog? Do you read/comment on blogs? Do you use RSS? Do you regularly look at your online reputation via Google. Are you lifestreaming via Posterous? Do you know what Google Wave is? 11% of American adults use a service like Facebook/Twitter to share updates about themselves or to see the update of others. Pew Internet & American Life Project, Dec. 2008 Where are YOU?
  • 20. Where Is EVERYONE? 210 Years of Information. Thomas Baekdal http://www.baekdal.com
  • 21. A Glimpse Into the State of Social Media 200M active users; 100M log on every day; 30M mobile users If country 5th largest behind China, India, US & Indonesia Average user has 120 friends Fastest growing demographic – over 35 850M photos uploaded each month 1B pieces of content shared each week
  • 22. A Glimpse Into the State of Social Media Amazing growth! Unique monthly visitors: Jan. 2008: 500,000 Dec. 2008: 4.43 M March 2009: 8 M Largest user demographic: 35-49 Users more mobile less tethered by technology Twitter replacing RSS and Google search – “real time” results
  • 23. WEB 2.0 THEN Author-Generated Controlled message Read Static Web Software Release Desktop Computing Central data World Wide Web NOW Dynamic and User-Generated Mental chatter & wisdom of crowd Read, write and collaborate Participatory Web Software as Service Cloud Computing Decentralized data World Live Web
  • 24. social media = 297 hospitals + youtube + facebook + twitter + blogs
  • 25. social media = doctor + disruptor + technology + e-visits + health stream
  • 26. hairball + health data + technology + consumer rights + viral campaign = e-social media health movement
  • 27. The WORLD has changed . . .
  • 28. . . . and so has the HIT landscape.
  • 30. Is it a time for HEALTH CONSUMERISM? Demographics -> “Pig In Python” (79M Baby Boomers) Rise in chronic illness and complexity of treatment Rising cost of health care and cost shift (employer -> you and me) Governments’ inability to afford uninsured/universal coverage Personalized medicine and genomics The role of PHRs and HEALTH 2.0: Shift to consumer-centric (PHR) model of health data Health consumer is at the center of integrated medical info network New technology tools to treat and reduce/manage chronic condition Mobile health to monitor/feed health data (the desktop to the pocket) Cost transparency/reform to the current reimbursement model Consumerism drives the need to get information and exercise control over yours/my health and care decisions
  • 31. WHAT IS HEALTH 2.0? Health 2.0 by Scott Shreeve MD. Creative Commons Attribution, Non-Commercial, Share Alike 2.5 License.Updated on 5/30/07.
  • 32. Health 2.0 = social software + web/cloud based + light weight tools + consumer/provider collaboration
  • 33. HOW IS HEALTH 2.0 IMPACTING CONSUMER DRIVEN CARE Health 1.0 Opaque System Passive Patient Physician Authority Insurance Adversary System Generated Health Care Health 2.0 Transparency Engaged Consumer Physician Advisor Health Plan Advocate User Generated Health and Wellness
  • 36. PHR and Health Platform
  • 45. Disease Communities Capturing & Sharing Outcome Data
  • 50. Reinvented Health Care Marketplace
  • 64. Employment(from 30 ways to lose your job on Twitter)
  • 66. ONE SLIDE PROJECT: Engage With Grace Project
  • 67. QuestionsRobert L. CoffieldFlaherty, Sensabaugh & Bonasso, PLLCHealth Care Law BlogRCoffield@fsblaw.comTwitter: @bobcoffieldGerald “Jud” E. DeLossMinneapolis, MinnesotaMinnesota Health IT Bloggdeloss@gmail.comTwitter: @gdeloss Slides Available via SlideShare