Consumer Health Informatics:Enabling Digital Health for Everyone

Individuals’ Opportunities and Challenges in the Era of Participatory HealthcareFrom Paternalistic Roots to Ethical Patient Engagementst -Century Information Technology as Game-ChangerInformation Sources for Facilitating Patients’ and the Public’s Engagement with HealthcareParticipatory Healthcare Societies and ConferencesPatient Participation in Different Aspects of Medical Care, Research, and DevelopmentPatient Participation in Their CarePatients as Influencers and Promoters of Biomedical ResearchPatient Communities as Participant-Organized Crowdsourcing NetworksPatients as Procedure and Technology DevelopersImpact of Participatory Medicine on Health Outcomes and the Cost of CareThe Challenge of Health Literacy and Digital Literacy Requirements for ParticipationPatient Engagement: Right Versus ResponsibilityRole of Consumer Health Informatics Tools in Supporting Participatory HealthcareWeb ResourcesReferencesConsumer Health Informatics as a FieldWhat Is Consumer Health Informatics?Scope of the CHI FieldWho Does Consumer Health Informatics?Web ResourcesReferencesHealth Literacy and Other Competencies: The Skills Consumers Need in Order to Be Effective in the Digital Health Information EnvironmentHealth LiteracyThe Concept’s BeginningsEarly Assessment of Health LiteracyHealth Literacy Levels in the PopulationAssociation with Health Behaviors and OutcomesIs the Relationship Between Health Literacy and Outcomes Causal?Newer Definitions and Measures of Health LiteracyFrom Health Literacy to E-Health Literacy: Other Relevant CompetenciesPractical Considerations for Designers and Promoters of Consumer Health Information ToolsReading Competency ProblemsNumeracy ProblemsSupporting Media and Information LiteracySupporting Computer LiteracySupporting Science LiteracyConclusionsWeb ResourcesReferencesOnline Databases to Support Consumer Health InformaticsHealth Information Online: An IntroductionBibliographic DatabasesHealthcare: MedicineDatabases and Literature for CHIPubMed and MEDLINEPsycINFOHealthcare: NursingCINAHLHaPIHealthcare: Consumer-FacingConsumer Health CompleteComputer and Information ScienceACM Digital LibraryLibrary and Information ScienceLISTA (Library, Information Science & Technology Abstracts)LISA (Library and Information Science Abstracts)EngineeringIEEE XploreINSPECIT IndustryBCC ResearchCitation DatabasesWeb of ScienceScopusGoogle ScholarDatabases Versus Search Engines: A ComparisonWeb resourcesReferencesTrusted Information SourcesOverview: Accuracy and CHIEvaluation GuidelinesGeneral CriteriaAuthority/AuthorsPurposeRecencyCitationsHealth-Information-Specific InstrumentsDISCERNHONCodeOther Widely Used standardsTrusted Sources of Health InformationCommon CriteriaResources Developed by Healthcare Professionals and Other Trusted SourcesLibrarians as Intermediaries for QualityReferencesPeople Engaging with Health Information TechnologyConsumersPatientsExemplar Technology: Consumers and PatientsCaregiversExemplar Technology: PHRs and Portals for CaregiversExemplar Technology: Apps for Coordinating CaregivingExemplar Technology: Psychosocial Support Networks for CaregiversParentsExemplar Technology: MyChart BedsideChildren, Adolescents, and Young AdultsExemplar Technology: College StudentsIntermediariesSeniorsExemplar Technology: National Institute on Aging WebsiteExemplar Health Technology: MedisafeWeb resourcesReferencesPHRs and Patient PortalsDefinitionsPersonal Health Record (PHR)Patient Portals“Tethered” versus “Untethered”Portals: An OverviewHistoryCurrent StatusExemplar Users of Patient PortalsStandards Affecting PHRs/PortalsKey Standards Organizations and Resources for Standards Development in HealthcarePortal Characteristics and ContentsChallengesPrivacyDigital DivideExpanding technological health accessFuture DirectionsWeb ResourcesReferencesThere Is an App for That: The Universe and the Promise of Consumer Health Mobile AppsIntroduction: Why Apps?The Evolving Universe of Consumer Health AppsWhat Topics Are Covered in Consumer Health Apps?Features: What Do Apps Do?Classifying Consumer Health Apps: An Attempt to Think SystematicallyChallenges of Quality Control and AssessmentChallenges of Apps CertificationDeveloping Authoritative and Reliable Rating CriteriaSo, Are These Apps Any Good?An In-Depth Look at Important App CharacteristicsContent AccuracyUsabilityResponsiveness to User NeedsHealth Professionals’ Involvement in DesignFit to Behavioral Change TheoryClinical EffectivenessData Privacy and SecurityChallenges of Finding Good AppsSearching App StoresAsking a DoctorAdvocacy OrganizationsFinding App LibrariesConclusionsWeb ResourcesReferencesSmart Medical Homes and Their Potential to Support Independent LivingWhat Are Smart Medical Homes?Smart Home ConceptDo Smart Medical Homes Actually Exist? Concept versus RealityWho Can Benefit from Smart Medical Homes?Smart Medical Homes’ Information Flow: It’s All About the DataAcquiring Raw Data via Sensors and TrackersData Tracking DevicesProcessing, Integrating, and Analyzing the DataMaking and Implementing Data-Driven DecisionsSupporting Essential Daily Living ActivitiesThe Importance of User Engagement in Identifying Challenges of Daily Living ActivitiesTechnical Challenges to Address in Smart Medical HomesEnergy EfficiencyInteroperabilityPrivacy and SecurityAttempts to Regulate Privacy and Security of Smart HomesNon-Technical Challenges to the Emergence of Smart Medical HomesMaking It Specific: Some ExamplesIn the WildIn the LaboratoryHome Healthcare RobotsEvidence of Clinical Significance of Smart Medical Homes TechnologyImpact on Health and Well-BeingSpecial Case: Impact on Ability to Diagnose Depression and DementiaEthical Consideration of Smart Medical Homes DevelopmentUsers’ Understanding of Privacy and Security ConsiderationsImpact on Social RelationshipsDiffusion of ResponsibilityImpact on Autonomy and IndependenceConclusionsWeb ResourcesReferencesPatient CommunitiesIntroductionBrief historyExamples of Patient CommunitiesBenefits of Patient Communities as Information SourcesPatients Supporting Each OtherChallenges of Patient CommunitiesWeb resourcesReferencesThe Ethics of Consumer Health InformaticsFoundations of Ethics in CHITRespect for AutonomyNon-MaleficenceBeneficenceJusticeEthical Codes of the ProfessionsExemplar: DTC Genetic TestingDTC-G: A Brief TimelineMotivation For UseConcerns about Inaccuracy and Incompleteness of Test ResultsEthical Implications of Literacies’ RequirementsScience Literacy and Understanding RiskSupporting Consumer Experience: The Current State of AffairsReceiving Bad News AlonePrivacy and EthicsPrivacy Considerations in DTC-G TestingConclusionsWeb ResourcesReferences
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