karen van caulil, ph.d health council of east central florida may 30, 2008
TRANSCRIPT
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
Clines and Haynes, 2001
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
Clines and Haynes, 2001
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
US Department of Health and Human Services, 2003
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
California Healthcare Foundation, 2008
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
US Department of Health and Human Services, 2008
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
US Department of Health and Human Services, 2008
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]