Health & The InternetWhat is the Current State?Current State: UsersCurrent State: ProvidersSlide 5Current State: Regulations & StandardsCurrent State: Public ConcernCurrent State: Government ConcernWhat are the Concerns?Slide 10Slide 11Slide 12What are some Solutions?Slide 14Slide 15Slide 16General SolutionsSome New Problems...“Internet Rules”Slide 20Slide 21The Take-Home MessageConclusionHealth & The InternetHealth & The InternetIan RoseComputer Science 99Winter 2000Dartmouth CollegeWhat is the Current State?What is the Current State?Lots of usersLots of providers (Web sites)Little regulation or standardsLots of concern!!Current State: UsersCurrent State: UsersCalifornia Healthcare Foundation midyear reports on number of US Adults retrieving health content from the Internet:1999 - 24.8 million US Adults2000 - 33.5 million (predicted)2003 - 52.0 million (predicted)Current State: ProvidersCurrent State: ProvidersNY Times estimates there are 100,000 medical Web sitesTop sites (survey): Nat’l Library of Medicine sites (Medline), Medscape, WebMD, DrKoop, med411.comJupiter Communications predicts that the online consumer healthcare market will grow to $1.7 billion by 2003Current State: ProvidersCurrent State: ProviderseHealth Ethics Summit Release findings:–“Visitors to health Web sites are not anonymous, even if they think they are.”–“There is inconsistency between the privacy policies and the actual practices of health Web sites.”–“Few health sites maintain a chain of trust with third parties on their site”Current State: Regulations & StandardsCurrent State: Regulations & StandardsThough some specific privacy regulations exist, and currently 131 Internet or electronic mail privacy bills are pending in 31 states…–There are no Federal privacy laws specifically for internet medical records, and–There is no “broad-based” privacy law or continuity between regulationsCurrent State: Public ConcernCurrent State: Public ConcernEthics Survey of Consumer Attitudes:–“Half of online users are concerned about the potential invasion of privacy of personal health information in the U.S”–Only 18% of respondents would disclose personal health information for more personalized Web service, whereas 90% of respondents would disclose their e-mail addressesCurrent State: Government ConcernCurrent State: Government ConcernFederal Trade Commission inquiry into privacy policies of several popular eHealth sitesFood and Drug Administration authority to regulate online sales of prescription drugsWhat are the Concerns?What are the Concerns?Privacy of data willingly divulged to enhance one’s online experience–not sharing this data with third parties–75% of surveyed users cite this as a concern (more than concern over unauthorized e-mail reading and hacker attacks)–Possible repercussions from insurance companies or employers (for example) if confidential information is sharedWhat are the Concerns?What are the Concerns?Privacy of data NOT willingly divulged–“caught” from another site (possible via cookies a la DoubleClick?)–merging of data from multiple sources (DoubleClick is [in]famous for doing this)–Security loopholes (e.g. previous page ‘get’ data postings appended to URL)–Collection of aggregate dataWhat are the Concerns?What are the Concerns?Biased / Unreliable Information–Test study on four popular search engines:–Fewer than half the pages contained medical information about the searched-for condition.–“Of those that did, about 60 percent had information that had been through the peer-review process”–“The other 40 percent of the pages had data that had not been reviewed or didn't list the source of the information. “What are the Concerns?What are the Concerns?Lack of certainty regarding Gov’t role–“Are there current State or Federal laws that protect the privacy and confidentiality of personal medical information on the internet?”–70% of people say “I don’t know”–“Who do you think should be responsible for regulating health sites and the way they use information obtained from visitors?”–Most popular answer: Government (35%)What are some Solutions?What are some Solutions?Privacy of data willingly divulged to enhance one’s online experience–Interrogating sites’ privacy statements (electronically?)–holding sites accountable to their statements (CHCF Privacy Policies Report)–Holding business partners and advertisers to similar standards of responsibility and fair business practices (e.g. DrKoop.com reevaluating its relationship with DoubleClick)What are some Solutions?What are some Solutions?Privacy of data NOT willingly divulged–Same standards as for willingly divulged information–Merging of Data: Government and/or Industry privacy standards–Security loopholes: Independent security testing, evaluation, and/or certificationWhat are some Solutions?What are some Solutions?Biased / Unreliable Information–Industry standards for reporting sources of information–Clearly distinguish between ads and information–Independent evaluation/certification with public results (seal): TRUSTe, HON–Caveat: Improved customer faith in such certifications. Studies show that seals of approval from Internet trade groups do not make people more apt to share health informationWhat are some Solutions?What are some Solutions?Lack of certainty regarding Gov’t role–Education regarding current law–Simplification/unification of current law–Example: European Union’s 1995 directive on the protection of personal data. Lays down “common rules to be observed by companies that collect or transmit personal information.” Gives consumers the right to access and correct information about themselves.General SolutionsGeneral SolutionsCalifornia HealthCare Foundation investigative reports on privacy policies and consumer attitudesInternet Healthcare Coalition (IHC) e-Health Ethics InitiativeThe Health on the Net Foundation Code of Conduct (HONcode) for medical and health Web sitesSome New Problems...Some New Problems...Solutions presented this far are primarily based on:–Government controls & regulations–Intra-Industry controls & regulations–Industry standardizationSo what’s the problem?The Internet Has its Own Set of Rules““Internet Rules”Internet Rules”The Internet has shown unparalleled growth and has brought
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