Consumer eHealth: Health Beliefs

1
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

2
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

3
Consumer e-Health The Law

• HIPAA (1996) set EDI standards for providers,
  payors and government final privacy standards in
  development see http//aspe.os.dhhs.gov/admnsimp/
  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
  individual
• Compliance cant be mandated till at least 2002

4
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

5
Consumer e-Health The Law (contd)

• Various online privacy legislation proposed at
  Federal level much has occurred via private
  agreement
• 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)

6
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

7
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
  individuals
• 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

8
Consumer e-Health Internet Self-Regulation

• medCertain, European Commission funded,
  developing trustmark system for consumers to
  link to site info
• BrightStreet.com (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

9
Consumer e-Health Emergency Information

• Often, providers unaware of patients medical
  history
• 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

10
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.
  overall?

11
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
  applications
• 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

12
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
  disclosure
• Couple concern with lack of awareness as to
  how/how much all this happens even intelligent
  patterning may be seen as data privacy abuse

13
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

14
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
  aggregate?
• 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?

15
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
  shopping
• 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

16
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
  address
• 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
  sites

17
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
  online

18
Consumer e-Health Information Seekers Privacy
Concerns

• LaurusHealth.com 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

19
Consumer e-Health Information Seekers Privacy
Concerns (contd)

• Are these suspicions founded? Often, yes
• California HealthCare Foundation findings
  DrKoop.com sold e-mail addresses, contrary to its
  policy
• 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

20
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
  year
• 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

21
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
  narrowing

22
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
  doctor
• A third (35) specified the Web as the first
  place to go for medical answers

23
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

24
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

25
Consumer e-Health Providers Watch Do They
Learn?

• 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

26
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

27
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 )

28
Consumer e-Health Online Pharmacies (contd)

• PC Data study 7 online pharmacy use only 11
  of sample expected online pharmacy use to
  increase
• 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, drugstore.com, Walgreens most
  well-known online pharmacies

29
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
  management
• Harris 77 of online women would communicate
  privately online with doc half of these would
  pay more for the privilege same caveats apply

30
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
  it

31
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
  ignorant
• By Harris numbers, 86 x 56 (its percentage for
  online access) 48 of U.S. adults already in
  the e-health information market

32
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
  backgrounds

33
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

34
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
  system

35
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
  distrust
• 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
• .

36
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
  expectations
• 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