Karen van Caulil, Ph.D Health Council of East Central Florida May 30, 2008.

Karen van Caulil, Ph.D Karen van Caulil, Ph.D Health Council of East Central FloridaHealth Council of East Central Florida

May 30, 2008 May 30, 2008

Most Popular Consumer Health WebsitesFebruary 2008

1. WebMD2. NIH.gov3. MayoClinic.com4. MedicineNet.com5. everydayHealth.com6. Healthline.com7. RevolutionHealth.com8. Drugs.com9. MedHelp.org10.RxList.com

http://www.eBizMBA.com, 2008

What Consumers WantClean and uncluttered websites

Layout, appearance and presentation are importantMinimal advertising; affects credibility of website

Easy-to-use interface with minimal clickingReliable sources (i.e., where does info come from?)

Ability to contact provider and/or website ownerUp-to-date content (i.e., website is updated frequently)

Links to recommended sitesEasy to understand text, information and illustrations

Readability important; minimal use of professional terminology

Ketchum/Medical Library Association , 2008Eysenbach & Kohler, 2002

Consumer Internet Preferences 2001 Pew Internet Study Results

93% report convenience is important when searching for health information online

Internet users like a diverse menu of resourcesConsumers are loyal to websites they consider

valuableOther statistics include:

80% say it is important to get health information anonymously; 16% used Internet for sensitive info

86% are concerned about unreliable sources of info58% have looked to see what company provides info63% of women access health info compared to 46% men

Fox & Rainie, 2001

What Makes a Website Credible?Credible Internet sources should:

Mirror tradition and contain peer-reviewed linksInclude journals, universities, recognized research

centers, libraries, government agencies and professional organizations; accreditation important

May include small organizations (i.e. consumer advocacy groups and/or volunteer organizations)

Websites should be judged by quality and designClear authorship/source, attribution and opportunities

for feedback and interactivity Accessibility, ease of use, links, aesthetic

characteristics

Clines and Haynes, 2001

Where Does the Information Come From?

WebMD as an exampleURAC accreditedProvides credible information, supportive

communities and in-depth reference materialContains approved site sponsors dedicated to

providing health and lifestyle information Full-time professional staff consists of board-

certified physicians, award-winning journalists and trained community moderators Advanced degrees in journalism, medical illustration,

health communications, clinical informatics, medicine and nursing

www.webmd.com, 2008

Characteristics of Unreliable Websitesand Problems for Consumers

Unreliable websites may include: Disorganization; information is plentiful yet randomUse of technical language and/or health jargonLack of user friendliness, peer review and/or

regulation Risk-promoting messages Inaccurate and/or misleading information

Problems for ConsumersInformation overload and poor evaluation skillsDifficulty in searching for informationPotential for pathologies and maladaptive behaviors


Consumer Health Information and Best Practices

Who runs the site?Who pays for the site?What is the purpose of the site?Where does the information come from?What is the basis of the information?How is the information selected?How current is the information?How does the site choose links to other sites?What personal information does the site collect?How does the site manage interactions with

visitors? NCAM, National Institutes of Health, 2008

What Elements of a Website Represent Good Consumer

Information?Website should be clear as to who is responsible

for providing the health information; original source of information should be labeled

Qualifications/credentials of those presenting information should be listed

Source of funding for website should be clearly stated

Medical facts and figures should be referencedOpinions and/or advice should be separated

from “evidenced-based” materialNCAM, National Institutes of Health, 2008

What Elements of a Website Represent Good Consumer

Information?Information should be current and website should

be updated on a regular basisPolicies should be present as to how the website

establishes links with other health-related websitesCredible websites should clearly state why they do

and/or do not require consumer informationIf website does require personal information, it

should state why and how it intends to use itThere should always be a way to contact the

website’s host if consumer needs feedback or has problems

NCAM, National Institutes of Health, 2008

Examples of Consumer and Librarian Health Resources

Consumer LibrarianFloridahealthfinder.govFlorida Electronic LibraryFloridashealth.comHealthyFloridians.comMyflorida.comFloridaInformedPatient.comFlorida Health Information

Center (USF)National Health Information

Center (Resource Database)MedlinePlus,

NIHSeniorHealth

Medical Library Association (provides information from over 1,200 institutions )

Florida Health Sciences Library Association (helpful links)

Floridashealth.com PubMed (access to Medline) National Network of Libraries

of Medicine (nnlm.gov) UF Health Science Center

Libraries and Hardin MD Central Florida Library

Cooperative (Librarian's Internet)

Benefits of Consumer Health-Information Seeking

Widespread access to health information Interactivity promotes interpersonal

interaction and social supportTailoring of information allows consumer to

select website based on:knowledge, education/language level, need and

preferences for format and learning styleOffers anonymity for consumers

Consumers may obtain sensitive information without having face-to-face interaction with medical provider


Health Information Technology (HIT)Technological tools that enable healthcare

consumers and providers to securely exchange medical information through various electronic platforms

Allows consumers to store medical information in one place so that they may better understand and manage their healthcare needs

Examples of HIT platforms: Google HealthMicrosoft HealthVaultAetna SmartSourceMy HealtheVetAHLTA

US Department of Health and Human Services, 2008

Benefits of HITImprove healthcare quality Prevent medical errors and adverse eventsReduce costs and duplication of servicesIncrease administrative efficiencies and decrease

paperworkProduce public health benefits

Encourages prevention and early detection of disease

Allows consumers to evaluate healthcare based on value

Builds partnership between consumer and providerUS Department of Health and Human Services, 2008

Personal Health Records (PHR) and/or Electronic Health Records (EHR)

Electronic application that allows consumers to access, manage, share and control personal health information (PHI) in a secure environment

Allows coordination between consumer, provider, family, institution, etc.; information available to consumer and authorized individual when needed

Permits consumers and authorized individuals to access vital information, such as medical conditions, prescriptions, test results, doctor’s notes, claims, etc.

PHR may be part of the EMR/EHR

Bernstein, 2006

HIPAA and HITHealth Insurance Portability and Accountability ActPrivacy Rule (2001)

Established national standards for the protection of health information

Applies to the three types of covered entities that conduct healthcare transactions electronically:

health planshealthcare clearinghouseshealthcare providers

Covered entities must implement standards to protect and guard patient health information


HIPAA and HITMany non-covered entities that offer PHRs are

not required to comply with HIPAA regulationsRecent ONC study of 30 uncovered PHR vendors

showed numerous deficiencies in privacy protection policies

No HIPAA guidelines exist for patient information that travels from an EMR of a covered entity to a PHR of a non-covered entity

HHS must expand HIPAA privacy rules to meet the needs of a growing national health information network and online PHRs

Journal of Health Care Compliance/Brown, 2007

Google Health/Microsoft HealthVaultGoogle Health

Online health information databaseDesigned to store patients’ medical historyUsers may collect, store, manage and share PHI for no costHealth information provided by WebMD

Microsoft HealthVault Similar to Google; ability to store PHI from fragmented

locations in one place for no costUsers may create PHRs, import data (device/fax) and share

health information with authorized individuals/familyAllows users to interact with websites, programs and

devicesPartners include: Johnson & Johnson, Mayo Clinic and

Texas InstrumentsHealth information provided by Healthline Networks

Mayer, 2007/Microsoft HealthVault, 2008

National Consumer Health Privacy Survey

2,000 US consumers participated in 2005 survey Study assessed consumer attitudes/behaviors

toward HIT, HIPAA privacy notices and privacy breaches

Results of study:67% of consumers are “very concerned” about privacy

of their personal health information (PHI)24% report incidences where PHI was compromised98% willing to share PHI with their doctor; 60% would

share PHI with unfamiliar providers if it improved careCompared to 1999 study by CA Healthcare Foundation,

privacy concerns have increased dramatically

California Healthcare Foundation, 2005

The State of HIT in California: Consumer Perspective

2008 study examined over 1,000 California consumers’ adoption, use and perception of HIT

50% of consumers obtained health information on the Internet within the last year (41% books/magazines)

40% interested in accessing a PHR online; only 2% currently do so

50% interested in scheduling appointment online; 7% actually do so (concern over security/confidentiality)

Half of consumers interested in receiving email from provider; only 4% communicate with email


Consumer Trends


Consumer Perceptions73% of Americans believe benefits of PHRs/EHRs

outweigh potential privacy risksHowever, 2 out of 3 Americans are still concerned

about the confidentiality of their PHI and are unaware of their privacy rights under HIPAA

Many consumers do not trust their employers to protect their PHI due to a lack of HIT and HIPAA education

Consumers afraid that online PHI may be viewed by unauthorized individuals and lead to:Denial of health insurance, mortgage and/or

job/promotionSocially ostracized based on web searches for HI

California Healthcare Foundation, 2005Kaiser Permanente, 2007

Natesan, 2005

ONCThe Office of the National Coordinator for

Health Information Technology (ONC)Federal office in charge of establishing

national network that allows for the exchange of electronic healthcare information between medical providers

Created to help reach President Bush’s goal of providing American’s with “interoperable” electronic medical records by 2014

As of March 2008, ONC announced plans to integrate national network with Google Health and Microsoft HealthVault


ONCProvides support to the American Health

Information Community (AHIC) and Secretary of Health and Human Services (HHS)Digital records/interoperability Encourage market adoption Ensure privacy and security

Plays vital role in the implementation of HHS strategic plan to incorporate national HIT network in public and private healthcare sectors


Florida Agency for Health Care Administration Responsible for the administration of the Medicaid program,

licenses and regulates health facilities and provides healthcare information to Florida consumers

Recent efforts include the Center for Health Information and Policy Analysis: FloridaHealthFinder.gov Compare the quality of providers, health plans, hospitals and

prescription drugs Enable consumers to play a more active role in their health Improve quality of care and reduce costs

Long range plans include: Develop strategy to inform consumers about AHCA website

and increase healthcare transparency Identify budget needs/funds for statewide public relations

campaign Implement consumer feedback procedures (consumer needs

AHCA)AHCA Website, 2008/The Florida Center 2006 Annual Report

RHIOs Regional Health Information Organizations Established to help build the Florida Health Information Network (FHIN)

FHIN: statewide collaboration of RHIOs and AHCA to improve exchange of clinical health information and allow providers to access EMRs in a timely/effective manner

Three Primary Goals: Bring together key healthcare stakeholdersEnable data sharing between healthcare providersProvide access to data through web-based portals

No payment structure in place at this time; future model may use transaction fee/licensing fee/subscription fee for sharing data

Current RHIO efforts may be in jeopardy as a result of free public PHR vendors (i.e., Google Health); finding funding biggest challenge

Possibility that consumers will access Google and other well-known health resources instead of Florida’s HI network (i.e., FloridaHealthFinder.gov)

Will Florida compete or partner with national health information databases?

Rawlins/AHCA, n.d.

The Future of HIT: What About the Consumer?

Consumers must be educated on privacy rights under HIPAAEmployers must ensure safety of workers’ PHI and

communicate privacy policies/practices to employees (i.e., Aetna SmartSource)

Federal privacy laws must be clearly defined, expanded and enforced; HIPAA rules must apply to uncovered PHR vendors

HIT benefits: Promotes consumer independence and control Promotes public health Promotes provider acceptance of NHIN, PHRs and EHRs

Questions to consider: What is the best model for a PHR? How will PHR vendors meet the needs of consumers? Who owns the PHR? What information should be shared? How will public PHR vendors (i.e., Google) impact the work of

RHIOs?

California Healthcare Foundation, 2005/Bernstein, 2006

Questions and/or Comments

Karen van Caulil, Ph.DExecutive Director

Health Council of East Central [email protected]

Karen van Caulil, Ph.D Health Council of East Central Florida May 30, 2008.

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