Presentation by Bob Coffield and Jud DeLoss at the American Health Lawyers Association Annual Meeting, July 1, 2009, Washington, DC.

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.

29. Without CHANGE . . .

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

34. Personal Health Records

35. Personal Health Records

36. PHR and Health Platform

37. Personalized Health Search

38. Personalized Physician Search

39. Collaborative Medical Information Wikis

40. Physician Social Community

41. Web BasedPractice Management

42. Virtual Concierge e-Health Practice

43. Practice Management Tools

44. Health Support Community

45. Disease Communities Capturing & Sharing Outcome Data

46. Consumer Facing Health Tools

47. Consumer Facing Health Tools

48. Personal Health Tools

49. Health Consumer Tools

50. Reinvented Health Care Marketplace

51. Consumer Health Financial Tools

52. Health Financial Tools

53. Insurance Coverage/Discovery

54. Blogging/Med Mal/Privacy

55. Medical Identity Theft/Privacy

56. Negative Review/Libel

57. Contract Law/Libel/Litigation

58. EHRs/PHRs/HIEs/Malpractice

59. User Agreement/Contract Law

60. Health Data Ownership

61. Privacy/Regulatory

62. Patient Rights/Privacy

63. Discovery/Employment

64. Employment(from 30 ways to lose your job on Twitter)

65. Legal Ethics

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