PHRs, Health 2.0 and the Impact of Social Media on Health CareAmerican Health Lawyers AssociationAnnual 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” PHRsStand-alone PHRsRequire patients to gather and enter their own informationTethered PHRsProvided by a health plan, provider, or employer sponsor who populates the PHR with information

PHR 2.0Not merely a data collection application Platform for the electronic aggregation and storage of health informationFoundation for various applicationsPersonal Health Information Networks – part of NHIN

Impact of PHRsComprehensive shift in the way health information is used, maintained, and storedImpact on means and methods for patients, health care providers and payers to maintain, use, control, and disclose health informationThe current, decentralized system of records maintained by multiple providers and entities at multiple locationsTransformed into a centralized record maintenance system that may rely on personal health information networks ("PHINs"), where the PHR serves as the central repository

Data OwnershipWho 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 OwnershipPhysicians and other healthcare providersMaintain ownership of health information results in a greater likelihood of maintaining a relationship with the patientPatient 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 providerRehash in the form of health intake questionnaires, health and physical history examinations, and tests which may not have been adequately communicated

Data OwnershipPlan ownershipUnderwriting and utilization review activitiesWhether coverage may be extended or whether a pre-existing condition is presentAggregate 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 OwnershipThe PHR VendorPatient privacy advocates have expressed concern over what use PHR vendors will put to the health informationAn individual executes an authorization then the vendor may use or disclose the health information in any manner it wishes, since HIPAA would no longer applyNew 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 OwnershipPatient ownershipResults in framework where medical, expense, well-being, and utilization are aligned within one partyPatient has an incentive to keep costs to a minimum by avoiding multiple or repetitive proceduresPatient 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

DiscriminationUnder HIPAA, a group health plan is prohibited from disclosing protected health information to a plan sponsor (typically an employer) for other than plan administration functionsIn addition, the plan sponsor must certify that it will not use or disclose the protected health information for employment-related actionsHealth plans, including group health plansoffering PHRs to their enrolleesMust ensure that the PHR is either not accessible by the group planAny 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

DiscriminationIn 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 ActUnder 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 ActBreach Notification RequirementsThe HITECH Act imposes breach notification requirements on PHR vendors and entities that offer products and services through, or that access information from, a PHRRequires 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 ActThe HITECH Act generally requires that breach notices be sent without unreasonable delay and in no case later than 60 calendar days after discoveryNotices 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 telephoneFurther, 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 resideIf 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 areaA 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. 2008Where are YOU?

Where Is EVERYONE? 210 Years of Information. Thomas Baekdal http://www.baekdal.com

A Glimpse Into the State of Social Media200M active users; 100M log on every day; 30M mobile usersIf country 5th largest behind China, India, US & IndonesiaAverage user has 120 friendsFastest growing demographic – over 35850M photos uploaded each month1B pieces of content shared each week

A Glimpse Into the State of Social MediaAmazing growth! Unique monthly visitors:Jan. 2008: 500,000Dec. 2008: 4.43 MMarch 2009: 8 M Largest user demographic: 35-49 Users more mobile less tethered by technologyTwitter replacing RSS and Google search – “real time” results

WEB 2.0THENAuthor-GeneratedControlled messageReadStatic WebSoftware ReleaseDesktop ComputingCentral dataWorld Wide WebNOWDynamic and User-GeneratedMental chatter & wisdom of crowd Read, write and collaborateParticipatory WebSoftware as ServiceCloud ComputingDecentralized dataWorld 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 treatmentRising cost of health care and cost shift (employer -> you and me)Governments’ inability to afford uninsured/universal coveragePersonalized medicine and genomicsThe role of PHRs and HEALTH 2.0:Shift to consumer-centric (PHR) model of health dataHealth consumer is at the center of integrated medical info networkNew technology tools to treat and reduce/manage chronic conditionMobile health to monitor/feed health data (the desktop to the pocket)Cost transparency/reform to the current reimbursement modelConsumerism 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 CAREHealth 1.0Opaque SystemPassive PatientPhysician AuthorityInsurance AdversarySystem GeneratedHealth CareHealth 2.0TransparencyEngaged ConsumerPhysician AdvisorHealth Plan AdvocateUser GeneratedHealth 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