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Consumer eHealth: Health Beliefs


More to come, e.g. WebMD acquisition of OnHealth databases raises questions ... WebMD, Drkoop and discoverhealth most- recognized U.S. health sites ... – PowerPoint PPT presentation

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Title: Consumer eHealth: Health Beliefs

Consumer e-Health Health Beliefs
  • The public wants to believe in medicine and the
    power of science
  • Doctor is still considered the most prestigious
    of 17 professions (Harris Poll, 8/2000), followed
    by scientists and teachers
  • When asked to attribute future deaths, most
    polled (Harris 1/2000) exaggerated deaths caused
    by violence and accidents, overestimated progress
    in prostate and breast cancer, underestimated
    progress in cardiovascular disease
  • Demonstrating limited knowledge of relative
    health risks

Consumer e-Health Ethics for Marketers
  • ESOMAR researchers basic responsibilities
  • Avoid raising unfounded hopes, misleading in
    terms of product safety, encouraging public to
    ask practitioner for specific prescription
  • The lack of privacy rules on the Web is the
    number one barrier to people getting better
    health care information, because theyre afraid.
    Janlori Goldman, Georgetown
  • Since marketings core function is creating
    mutually beneficial exchanges, responsible health
    care marketers minimize barriers to appropriate
    information and care seeking
  • Research can point the way

Consumer e-Health The Law
  • HIPAA (1996) set EDI standards for providers,
    payors and government final privacy standards in
    development see http//
    for updates
  • Draft regulations posted November 1999
    identifiable info release requires patient
    consent, patients can view and correct records,
    training of data workers required, some
    accounting of disclosures audit trail re who saw
    what data
  • Scope includes data that would have to be
    combined with other data to identify an
  • Compliance cant be mandated till at least 2002

Consumer e-Health The Law (contd)
  • Currently, proposed HIPAA regulations exempt
    disease management some privacy groups object
  • Perception that disease mgt firms sell names to
    pharma however, Disease Mgt Assoc of America
    supports firewalls, ban on revealing
    pt-identifiable info
  • Note If exemption lifted, health plans and their
    agents would be unable to use own data to locate
    and notify members of disease mgt program options
  • DMAA data opt out rate from disease mgt
    programs, once enrolled, only 4 perceived
    control of disease, not privacy, generally cited

Consumer e-Health The Law (contd)
  • Various online privacy legislation proposed at
    Federal level much has occurred via private
  • July 2000 agreement between Network Advertising
    Initiative (including DoubleClick and
    MatchLogic), Dept. of Commerce and FTC provides
    for robust notice and opt-out choice if sites
    collect personally-identifiable medical or
    financial information, monitor Web site use,
    merge on and off-line data
  • However, still a negative option approach,
    doesnt define sensitive, doesnt apply to
    non-advertisers (e.g. marketing vendors)

Consumer e-Health The Law (contd)
  • Legislative proposals under consideration
    prohibit certain uses of information, allow
    cookie downloads by invitation only, mandate
    opt-in before information can be collated/used
    require notice of information use on sites
  • 1998 FTC core elements notice to individual,
    choice about revealing information, access to
    information already collected, enforcement of
    privacy standards with penalties
  • Privacy groups pushing for more than negative
    options consumers would in essence be forced to
    acknowledge information collection and usage
  • In some ways, preserving privacy would be more
    intrusive than in direct mail

Consumer e-Health The Law (contd)
  • Pharmatrak places cookies on computers browsing
    major pharma sites tracks every move, e.g.
    downloads of info re disorders, without informing
    users purportedly plans to link surfing with
  • Lawsuits pending, include State of Michigans
  • Web browsers can notify users of attempted cookie
    placement, allow refusal. However, many Web users
    dont know this.
  • 10/4/2000 consensus statement from Internet
    Healthcare Coalition, HON Foundation, Hi-Ethics
    states plan to combine their three codes of
    ethics this will become the Webs leading
    health information standard

Consumer e-Health Internet Self-Regulation
  • medCertain, European Commission funded,
    developing trustmark system for consumers to
    link to site info
  • (Web users can modify their
    profiles on its sites)
  • URAC (American Accreditation Health Care
    Commission) pushing accreditation for health care
    Web sites
  • TRUSTe (purportedly violated its own privacy seal
    of approval guidelines by tracking users
    movements via cookies and invisible images
    without their consent)
  • Mail Abuse Prevention System, which blocked
    Harris Interactives access to 2.7M of its panel
    members due to disagreement over double opt-in

Consumer e-Health Emergency Information
  • Often, providers unaware of patients medical
  • In France and Germany, public carries smart
    cards with encoded personal medical information
  • Americans often skeptical, afraid of card theft
  • Numerous private ID schemes, e.g. medical alert
    jewelry, Internet-accessible databases which are
    updated periodically or on demand
  • Why does this matter?
  • Less lopsided tradeoffs between data privacy and
    better care inevitable over time

Consumer e-Health Survey Recruitment
  • Web site recruitment concern does the invitation
    become the survey context?
  • Some vendors level the bandwidth playing field
    by providing freestanding audio/video devices,
    thus promoting greater representativeness among
    their panels
  • Again, question whether the device assumes
    greater importance than survey content, and how
    this might influence responses
  • To what extent do these devices and the
    survey-taking process, if frequent, influence
    attitudes toward pharma, drugs, health, etc.

Consumer e-Health Survey Design
  • Privacy, security issues in consumer health more
    top of mind than with health survey research
  • Due to media furor this could change any time
  • Cookies controversial, not needed in many survey
  • Java can freeze/crash computers, apps try to
    minimize RAM used by scripts
  • Being on the bleeding edge leaves some of your
    potential respondents to do the bleeding
  • Significant percentage of population still has
    14.4 bps connections, non-Power PC chips

Consumer e-Health Web Use Context
  • LA Times One-third (35) of US Net users came
    online only in the last year
  • Daily, consumers hear and read about questionable
    Web user information use or resale
  • Recent news Amazon shares users prefs bankrupt
    toy site peddles database TRUSTe, privacy seal
    of approval vendor, tracked own users with
    cookies, DoubleClick dropped plan to correlate
    private data with Abacus Direct GeoCities rapped
    by FDC for selling data, drkoop, WebMD planned to
    link on and offline identifiers without
  • Couple concern with lack of awareness as to
    how/how much all this happens even intelligent
    patterning may be seen as data privacy abuse

Consumer e-Health Privacy Context
  • Several schools of thought about privacy
  • As with BtB marketing, targeted ads may be
    considered less intrusive than broadcasts over
    time do we wait it out?
  • Yet, brand equity could depreciate if online
    behavior tracking considered overly invasive
  • When you think AOL, do you think targeted
    marketing or junk (e)-mail?
  • October 3 AOL testifies to Senate panel against
    opt-in as too cumbersome, one-size-fits-all
  • While privacy groups argue that opt-in is
    standard in medicine, banking

Consumer e-Health Privacy Checklist
  • How are user ID and password linked to data?
  • Who is aware of these links?
  • How secure is transmission of user data?
  • Do you sell or share user data at any level? Are
    users aware of this?
  • Are data ever reported other than in the
  • Do you download temporary or permanent cookies?
    What do they track? Did the user agree?
  • What sites are linked to yours? What are their
    data privacy policies?

Consumer e-Health Privacy Viewpoints
  • Internet users want the Golden Rule of the
    Internet to be Dont do anything unto me unless
    I give you permission. Lee Rainie, Pew
    Internet Survey Project
  • In Pew study, (5-6/2000) 56 of users could not
    define cookies, which track about 90 of Web
  • Only one-fourth (27) of respondents bought
    target marketing argument for Web use tracking
    54 said opt out is privacy invasion 86 favor
    opt in
  • Yet 54 have exchanged personal information for
    content, and another 10 said they would
  • Another 27, however, would never give personal
    information to a Web site

Consumer e-Health Privacy vs. Usage
  • In Pew study, one-third (36) reported seeking
    online support for health, family and mental
    health issues, via support groups or specific
    disorder information, with one-fourth (24) of
    those signing in with their real name and e-mail
  • Users still afraid over half (54) worry re
    downloading a virus one-third fear that someone
    will know what sites they visit
  • Harris Interactive study, summer 2000 only about
    half those registering at a a health site sought
    its privacy statement
  • One-fifth of those polled had provided personal
    data, yet over 80 found it difficult to
    identify the sponsors or funders of specific

Consumer e-Health Privacy vs. Usage (contd)
  • More Pew findings 84 are concerned that
    businesses and/or strangers are acquiring
    personal information 81 want rules about
    online activity tracking
  • 24 of respondents reported lying to protect
    their privacy on a site 10 have blocked cookies
    on their computers, 9 encrypted e-mail, 5 used
    software aliases
  • 25 report having had a computer virus 25 have
    made an online only friend 26 have responded to
    a strangers e-mail 48 had bought something

Consumer e-Health Information Seekers Privacy
  • study (1/2000) 57 more
    likely to use Web site guaranteeing personal
    information wont be shared or sold 70 were
    unaware that personal health info is shared or
    sold to third parties thus research itself is
    adding to skepticism
  • Jupiter less than 20 of consumers interested
    in sharing any personal information with
    pharmaceutical sites
  • CyberDialogue of 37M Net users not accessing
    health information, 1/6 reticent due to privacy
    and/or security
  • Found most trust in physicians, medical
    institutes and associations ability to maintain
    privacy of data
  • Least trust in pharma companies, Web portals and
    online drugstores

Consumer e-Health Information Seekers Privacy
Concerns (contd)
  • Are these suspicions founded? Often, yes
  • California HealthCare Foundation findings sold e-mail addresses, contrary to its
  • Has since severed relationship with DoubleClick
  • More to come, e.g. WebMD acquisition of OnHealth
    databases raises questions
  • Scripts overlay banner ads at many sites subtle
    redirects from banner host to banner sponsor
  • Forms submission data can go to banner ad
    sponsors if code imprecise

Consumer e-Health Use of the Web
  • PC Data (9/2000) study 60 of Internet users
    have visited a health/medical site in the last
  • 68 of those knowing their insurer has a site had
    visited it
  • 58 of those visiting health sites used Web
    information to self-diagnose, get up to speed
    before consulting provider, 56 for general
    medical info, 43 for wellness/fitness, 42 for
    prescription info
  • Much less interest in finding doctors (15) or
    hospitals (8) than in medical information only
    20 had visited a hospital site

Consumer e-Health Use of the Web (contd)
  • Two-thirds expected to spend the same amount of
    time on medical sites in the future the rest
    were evenly divided between more or less time
  • WebMD, Drkoop and discoverhealth most- recognized
    U.S. health sites
  • Pew cumulative data In any given day, 52 of
    those with Internet access go on line 10 of
    these seek health or medical information
  • Gomez 73 of Net users surveyed had accessed
    health infostill younger, tech-savvy, but gap

Consumer e-Health Use of the Web (contd)
  • Contrary to some HCPs perceptions, most PC Data
    respondents seemed to see the Web in context
  • 71 of respondents agreed that Web sites are no
    substitute for a physician, but 64 thought the
    Web helpful in determining if they should see a
  • A third (35) specified the Web as the first
    place to go for medical answers

Consumer e-Health Information Quality
  • Harris Interactive study of 1,000 consumers
    almost as many (65) very confident of Web
    information from sufferers as from HCPs (73)
  • Correspondingly, 56 say essential to use lay
    language, only 39 essential that a physician
    validates information
  • PC Data survey of respondents who have visited
    chat rooms for health information, half (5 of
    total sample) found very useful information
  • 30 sought alternative medicine info

Consumer e-Health Information Quality (contd)
  • Web users validate online health information by
  • Conducting multiple searches
  • Visiting multiple sites
  • Asking provider(s) to validate information
  • About half of Harris respondents felt health Web
    sites should self-regulate information quality, a
    third that individuals using sites should judge
    only 14-16 of users or site developers wanted
    government to step in

Consumer e-Health Providers Watch Do They
  • Most popular site features? Health risk
    assessment, calculators, how-tos, e.g.
    exercise videos
  • Points to the thirst for answers, confirmation
  • HCPs argue vastly oversimplified, misleading,
    want complementary off and online information,
    not confusion and contradictions
  • Sign of the times Medscape, other portals
    feature what your patients are reading section

Consumer e-Health Providers Lag Portals
  • Computer Sciences Corp study 57 of 312 provider
    system sites were static, 41 lacked links, 40
    lacked any health info!
  • Some pharmas, e.g. Schering-Plough, as well as
    AMA (Medem) creating physician Web sites, pushing
    directory model, but most physician sites lack
    complementary links

Consumer e-Health Online Pharmacies
  • Widely publicized federal crackdowns on point
    and click self-prescribing Federation of State
    Medical Boards has charged State boards with
    developing guidelines for online scripts is
    actively ordering from suspect Web sites and
    tracing physicians
  • Four states have filed indictments charges
    include money laundering, mail fraud, obstruction
    of justice
  • Among nonusers, scant knowledge base of reputable
    online pharmacies and their actual policies (e.g.
    PlanetRx free shipping for scripts and anything
    else ordered at same time )

Consumer e-Health Online Pharmacies (contd)
  • PC Data study 7 online pharmacy use only 11
    of sample expected online pharmacy use to
  • Reasons for using online pharmacies avoid waits
    in line (52), prefer scripts sent to home (43).
    One-third (36) say prices better online
  • But offline shoppers say its more convenient,
    want to speak with pharmacist, not pay shipping
    costs or wait for delivery
  • PlanetRx, CVS,, Walgreens most
    well-known online pharmacies

Consumer e-Health Beware the Biased Study
  • Many misleading studies/results Deloitte
    Touche claims 34 would pay extra to manage
    benefits on line, 25 would switch plans,
    physicians, pay more for online communication
  • Social bias Im a sophisticated, hands-on
    consumer, right?
  • Argues for on and offline education, expectation
  • Harris 77 of online women would communicate
    privately online with doc half of these would
    pay more for the privilege same caveats apply

Consumer e-Health Beware the Oversimplification
  • CyberDialogue 75 of adults believe that people
    should take more responsibility for their own
    healthnot a yes/no question!
  • We can make some lifestyle decisions, care
    seeking, provider selection, treatment choices
    (unclear which of these carried more weight in
    the above question)
  • But cant control genetics, family history,
    environmental carcinogens, accidents, etc.
  • Core aspect of health care marketing is
    understanding what people think they can/want to
    control, how they think they can/want to control

Consumer e-Health Beware the Glitzy Label
  • Harris Poll (5-6/2000)calls 98M adults, or 86 of
    Net users cyberchondriacs, i.e. they seek
    Web-based health information, noting we did not
    intend to be pejorative
  • Whatever its intent, this term oversimplifies and
    denigrates the information-seeking process,
    hardly monopolized by hypochondriacs
  • Pharma marketers can ill afford to dismiss online
    health information seekers as high-strung and/or
  • By Harris numbers, 86 x 56 (its percentage for
    online access) 48 of U.S. adults already in
    the e-health information market

Consumer e-Health Whos Not on the Net?
  • Pew studies Half of U.S. adults
  • 32 of whom definitely will not go online, due
    to perceived danger, expense, confusion, and
    feeling that they are not missing anything (yet)
  • One-tenth of those off line are dropouts, due
    to lack of hardware, new job, expense, interest
    8 of dropouts cite privacy concerns
  • Intriguingly, non-users are less networked
    offline 20 say they have no one or hardly
    anyone to turn to for help are more suspicious
    that someone will try to take advantage of them
  • Non-users are less educated, older, and more
    likely than users to have minority ethnic

Consumer e-Health Powerful Partnerships
  • Dearth of relevant information at provider sites
    Scottsdale Institute study of 213 organizations
    found few with e-health strategy
  • Barriers include corporate politics, ROI concerns
  • Lack of organizational progress may slow patient,
    HCP uptake of new technologies
  • Technology offers opportunities for greater
    industry integration with consumer health
    players, facilitating public understanding of
    pharma issues

Consumer e-Health Wheres my Data?
  • Many proposals, staved off due to national
    satisfaction with personal provider and care, to
    socialize care and fix drug prices
  • Studies confirm consumers dont want government
    to run the Webor health care
  • Intellectually, we know personal data are
    everywhere. If anything, the media understates
    their availability.
  • Key consumer concerns deception, abuse of trust,
    third parties benefiting unjustly
  • These concerns dovetail with images of greedy,
    profiteering drug companies morally bankrupt

Consumer e-Health Push the Positives
  • To combat the worst, offer the best
  • Build real, fresh benefits into sites, not just
    calculators and product labels ally with
    third-party sites to gradually address industry
  • Evolve the education with the target
  • Research users needs and contexts on an ongoing
    basis, not once to build a site
  • Dont confuse satisfaction with value
  • Work with health care professionals to provide
    complementary information to theirs
  • Include physician extenders and nurses, often
    first line validators
  • .

Consumer e-Health Researchers Roles
  • Help marketing understand how
  • Benefits, costs and value of Web information and
    services are defined
  • Myriad new information products change
  • Good, bad and ugly media stories are integrated
    with users own experiences
  • Your organizations image and brand equity can
    gain value via the Internet
  • In Net-based survey research, follow the highest
    standards and convey their benefits