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We the People:We the People:How Nursing Informatics Can How Nursing Informatics Can

Contribute to Healthcare Reform Contribute to Healthcare Reform through Patientthrough Patient--centric HITcentric HIT

HIMSS10 NURSING INFORMATICS SYMPOSIUMHIMSS10 NURSING INFORMATICS SYMPOSIUMAtlanta, GAAtlanta, GA

February 28, 2010 February 28, 2010

Ida M. Androwich, PhD, RNIda M. Androwich, PhD, RN--BC, FAANBC, FAANProfessor and Director of Health Systems Management & PICES, Professor and Director of Health Systems Management & PICES, Niehoff School of Nursing, Loyola University Chicago Niehoff School of Nursing, Loyola University Chicago

Conflict of Interest DisclosureConflict of Interest DisclosureIda Androwich, PhD, RN, FAANIda Androwich, PhD, RN, FAAN

Has no real or apparent Has no real or apparent conflicts of interest to report.conflicts of interest to report.

Slide 2 (If no Conflict of Interest) of HIMSS10 Slide Deck

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AbstractAbstract

Today, more than ever, informatics Today, more than ever, informatics nurses can have a role in positively nurses can have a role in positively impacting the health of the public impacting the health of the public through the use of personalized through the use of personalized informatics and the innovative use of informatics and the innovative use of health information technology (HIT). health information technology (HIT). Current initiatives to motivate and Current initiatives to motivate and educate consumers in ways to improve educate consumers in ways to improve their health and wellness with HIT, new their health and wellness with HIT, new roles for informatics nurses, as well as roles for informatics nurses, as well as challenges and issues yet to be resolved challenges and issues yet to be resolved will be described.will be described.

ObjectivesObjectivesAt the end of this presentation, At the end of this presentation, participants will be able to:participants will be able to:

Discuss advances in technology that Discuss advances in technology that promote interactive patientpromote interactive patient--centric care centric care and consumer involvement and consumer involvement Discuss current opportunities for nurses Discuss current opportunities for nurses to leverage HIT to improve care delivery to leverage HIT to improve care delivery and health outcomeand health outcomeDescribe a potential research agenda for Describe a potential research agenda for interactive, patientinteractive, patient--centric HITcentric HIT

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Dual Nature of Information Needs Dual Nature of Information Needs for Patient Care Decision Supportfor Patient Care Decision Support

First, evidencedFirst, evidenced--based information based information (content) needs to be available at the point(content) needs to be available at the point--ofof--care to inform care to inform presentpresent patient patient encounter.encounter.

Second, data entered in the process of Second, data entered in the process of documentation needs to be able to be documentation needs to be able to be aggregated to inform aggregated to inform futurefuture patient patient encountersencounters

From Industrial Age to From Industrial Age to Information AgeInformation Age…………..Industrial AgeIndustrial Age

Care episodic Care episodic ––provided in traditional provided in traditional settingssettingsProvider centricProvider centricClinical data Clinical data interpretation limited interpretation limited by memory, intuition, by memory, intuition, pattern recallpattern recallKnowledge Knowledge development is development is produced in research produced in research settingssettingsMass production Mass production

Information AgeInformation AgeCare is ongoing Care is ongoing ––patient is the pointpatient is the point--ofof--carecarePatient centricPatient centricClinical data is (often) Clinical data is (often) supported by CDSS, supported by CDSS, alerts, reminders, alerts, reminders, evidenceevidenceKnowledge Knowledge development is bydevelopment is by--product of patient product of patient carecareMass customizationMass customization

Adapted from J. Perlin (2009)Adapted from J. Perlin (2009)

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Increased Value Requires IT

1.1. Economic pressures will accelerate valueEconomic pressures will accelerate value--based based healthcarehealthcare

2.2. ValueValue--based healthcare creates accountability based healthcare creates accountability for measured performancefor measured performance

3.3. Value will increasingly be measured Value will increasingly be measured longitudinally across sites and episodeslongitudinally across sites and episodes--ofof--care, care, and reinforced through payment reforms like and reinforced through payment reforms like ““bundlingbundling””

4.4. Longitudinal accountability for health and care Longitudinal accountability for health and care spans traditional silos & requires spans traditional silos & requires ““systemsystem--nessness””

5.5. Information is the key to systemInformation is the key to system--ness, ness, producing value, and proving itproducing value, and proving it

(Perlin, 2009)(Perlin, 2009)

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GoalGoal

New Knowledge as a Transparent New Knowledge as a Transparent ByBy--Product of Care:Product of Care:

••From From ““TRIPTRIP”” (Translating Research (Translating Research into Practice)into Practice)

toto

••““TPIRTPIR”” (Translating Practice into (Translating Practice into Research)Research)

(Perlin, 2009)(Perlin, 2009)

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Special Populations & Special Populations & ProblemsProblems

Vulnerable and UnderservedVulnerable and UnderservedChronically IllChronically IllCardiac, DiabeticCardiac, DiabeticMentally IllMentally IllObese and Immobile Obese and Immobile Elders, TeensElders, TeensPhysically and Mentally HandicappedPhysically and Mentally HandicappedIndividuals with Health Literacy IssuesIndividuals with Health Literacy Issues

Meaningful UseMeaningful UseHHS' definition of HHS' definition of meaningful usemeaningful use will include an will include an organization's ability to use health IT to organization's ability to use health IT to improve improve quality and "quality and "inform clinical decisions at the point inform clinical decisions at the point of careof care..””

David Blumenthal, national coordinator for health information teDavid Blumenthal, national coordinator for health information technologychnology

Includes:Includes:••Full interoperability Full interoperability ••Patient safety and quality reporting Patient safety and quality reporting ••Clinical documentation for physicians and the rest Clinical documentation for physicians and the rest

of the clinical teamof the clinical team••Training and ongoing technical assistance to the Training and ongoing technical assistance to the

clinical team to promote optimal exchange of clinical team to promote optimal exchange of information.information.

Phased approach to implementationPhased approach to implementation

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Meaningful Use R/T Meaningful Use R/T NursingNursingInclude: Include:

All care settings and providersAll care settings and providersData not typically captured in Data not typically captured in encounters or information systems encounters or information systems ––such as problems, interventions and such as problems, interventions and outcomes r/t functionality for use in outcomes r/t functionality for use in comparative effectiveness researchcomparative effectiveness researchReal time evidenceReal time evidence--based decision based decision supportsupport

AAN, 2009AAN, 2009

Roles for Informatics Roles for Informatics NursesNursesInformatics Nurses:Informatics Nurses:

Must be involved in conception & Must be involved in conception & designdesignKey to implementation & evaluationKey to implementation & evaluationAs meaningful users of HITAs meaningful users of HITAs essential care providerAs essential care providerEHR Data UsersEHR Data Users

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Current IT Hot TopicsCurrent IT Hot TopicsPersonal Health Records/Consumer Personal Health Records/Consumer InvolvementInvolvementNHIN and RHIOsNHIN and RHIOsEE--PrescribingPrescribingPrivacy and ConfidentialityPrivacy and ConfidentialityQuality and SafetyQuality and SafetyReimbursement (Reimbursement (““Never EventsNever Events””))Certification and Meaningful UseCertification and Meaningful UseFederal Involvement Federal Involvement -- ONCHITONCHITInternet UsesInternet UsesTerminologyTerminologyDSSDSS

Personal Health RecordsPersonal Health RecordsFully enabled electronic personal health Fully enabled electronic personal health records (PHR) have the potential to records (PHR) have the potential to enable consumers to efficiently manage enable consumers to efficiently manage their wellness and health caretheir wellness and health careImproved consumer health, particularly Improved consumer health, particularly for underserved populations can result for underserved populations can result from innovative uses of health from innovative uses of health information technology (HIT). information technology (HIT). Informatics Nurses are in an ideal Informatics Nurses are in an ideal position to build and support systems & position to build and support systems & applications that motivate and educate applications that motivate and educate consumers to improve their health and consumers to improve their health and wellness.wellness.

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PHR DefinitionsPHR Definitions““An electronic application through which individuals An electronic application through which individuals can access, manage and share their health can access, manage and share their health informationinformation……in a private, secure and confidential in a private, secure and confidential environment.environment.”” Markle Foundation, 2003.Markle Foundation, 2003.““An internetAn internet--based set of tools that allow people to based set of tools that allow people to access and coordinate their lifelong health information access and coordinate their lifelong health information and make appropriate parts of it available to those who and make appropriate parts of it available to those who need it.need it.”” Markle FoundationMarkle Foundation’’s Connecting for Health s Connecting for Health Collaborative, 2007 in KP Collaborative, 2007 in KP In FocusIn Focus (2007).(2007).““A PHR is an individualA PHR is an individual’’s electronic health record of s electronic health record of healthhealth--related information that conforms to nationally related information that conforms to nationally recognized interoperability standards and that can be recognized interoperability standards and that can be drawn from multiple sources while being managed, drawn from multiple sources while being managed, shared and controlled by the individual.shared and controlled by the individual.”” NAHIT, 2008. NAHIT, 2008.

Types/Models of PHRsTypes/Models of PHRs

OffOff--line PHRsline PHRsWebWeb--based commercial/organizationalbased commercial/organizationalFunctional/purposeFunctional/purpose--based PHRsbased PHRsProviderProvider--based PHRsbased PHRsPartial PHRs Partial PHRs

Wegman, 2005Wegman, 2005

StandStand--alone, tethered, integratedalone, tethered, integratedDetmer et al, 2008Detmer et al, 2008

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What is a PHR?What is a PHR?HistoricalHistorical••““Birth to Seven YearsBirth to Seven Years””••1953 1953 –– MedicAlert braceletMedicAlert bracelet••PaperPaper--based tracking of B/P, weight, glucosebased tracking of B/P, weight, glucose

Today Today ••Estimated 70 million have some form of PHR Estimated 70 million have some form of PHR

Broad range of definitions and typesBroad range of definitions and typesIndependence continuum from tethered to Independence continuum from tethered to interconnected to standalone interconnected to standalone PHRs integrated with EHRs, either through PHRs integrated with EHRs, either through tethering or interconnectivity, have the tethering or interconnectivity, have the potential for greatest impact. potential for greatest impact.

Stand Alone or Free Stand Alone or Free StandingStanding

PC basedPC basedAlso includes those on USB drives, CDs and Also includes those on USB drives, CDs and ““Smart Smart cardscards””Under complete (physical) control of patientUnder complete (physical) control of patientManual data entry required to populate and update Manual data entry required to populate and update fieldsfieldsUnlikely to be a Unlikely to be a ““trusted conduittrusted conduit”” as providers may as providers may question accuracy and completeness of patient self question accuracy and completeness of patient self reported (entered) datareported (entered) dataReliability of patient entered data depends on type Reliability of patient entered data depends on type of data, patientof data, patient’’s general health literacy and s general health literacy and motivation for accurate reportingmotivation for accurate reportingVulnerable to destruction, theft and lossVulnerable to destruction, theft and loss

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TetheredTetheredAlso called institutionAlso called institution--specific, webspecific, web--based based PHRsPHRsA limited form of the integrated PHR model A limited form of the integrated PHR model because connect with a single provider data because connect with a single provider data basebaseOffer patients access to parts of their Offer patients access to parts of their electronic health records via web portalselectronic health records via web portals

May allow eMay allow e--mail and followmail and follow––up appointment up appointment scheduling and prescription renewalscheduling and prescription renewalDisadvantage is that they do may not reflect Disadvantage is that they do may not reflect entire patient health provider experienceentire patient health provider experience

IntegratedIntegrated

Also called interconnected or networked webAlso called interconnected or networked web--based PHRsbased PHRs

Populated with patient data from a variety of Populated with patient data from a variety of sources, such as EHRs, pharmacy and insurance sources, such as EHRs, pharmacy and insurance (claims) data banks, home monitoring devices, as (claims) data banks, home monitoring devices, as well as patient input of datawell as patient input of data

Provides a more comprehensive patient viewProvides a more comprehensive patient view

Consumer an important contributor to record Consumer an important contributor to record contentcontent

Have potential to reduce error, improve patientHave potential to reduce error, improve patient--provider communication, eliminate duplication of provider communication, eliminate duplication of servicesservices

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Sample PHR Data Types and Sample PHR Data Types and Potential SourcesPotential Sources

Tang, P., Ash, J., Bates, D., Overhage, J., & Sands, D. (2006). Personal health records: Definitions, benefits, and strategies for overcoming barriers to adoption. Journal of the American Medical Informatics Association, 13(2), 121-126.

Objective and Subjective PHR Objective and Subjective PHR Data Types by SourceData Types by Source

Tang, P., Ash, J., Bates, D., Overhage, J., & Sands, D. (2006). Personal health records: Definitions, benefits, and strategies for overcoming barriers to adoption. Journal of the American Medical Informatics Association, 13(2), 121-126.

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Benefits of PHRBenefits of PHRGreater patient access to a wide range Greater patient access to a wide range of credible health information, data and of credible health information, data and knowledgeknowledgeImproved ability of patients (and Improved ability of patients (and providers) to collaboratively track providers) to collaboratively track chronic diseaseschronic diseasesBetter communication as encounters are Better communication as encounters are changed from episodic to continuouschanged from episodic to continuousMore data assists clinicians to make More data assists clinicians to make improved decisionsimproved decisions

Tang et al, 2006Tang et al, 2006

Enhanced patient safety, empowerment Enhanced patient safety, empowerment and patientand patient--provider communicationprovider communication

Kupchunas, 2007Kupchunas, 2007

Functionalities and Functionalities and ToolsTools

Access to providers electronic record, e. history, test Access to providers electronic record, e. history, test resultsresultsPersonal health organizer, clinics, providers, tests, Personal health organizer, clinics, providers, tests, dates, nondates, non--prescribes therapy, scanned documentsprescribes therapy, scanned documentsSelfSelf--management support, e.g. care plans, symptom management support, e.g. care plans, symptom graphing capabilities, passive biofeedback, tailored graphing capabilities, passive biofeedback, tailored instructional or motivational feedback, decision aids, instructional or motivational feedback, decision aids, reminders, alertsreminders, alertsSecure patientSecure patient--provider communications for provider communications for scheduling appointments, reorder Rx, seeking advicescheduling appointments, reorder Rx, seeking adviceLinks to static or interactive information about illness, Links to static or interactive information about illness, treatment or self caretreatment or self careAutomated capture of symptoms or health behavior Automated capture of symptoms or health behavior datadata

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Functionalities and Tools Functionalities and Tools (continued)(continued)

PHRs connecting with home monitoring toolsPHRs connecting with home monitoring toolsHealth care/disease management toolsHealth care/disease management tools

Linkages to education Linkages to education –– the the ““teachable teachable momentmoment””

Tools to build health literacyTools to build health literacyLinks to decision supportLinks to decision support

Single source for living wills/advance Single source for living wills/advance directives, health history, emergency contacts, directives, health history, emergency contacts, allergy and immunization records, medicationsallergy and immunization records, medications

HealthHealth--related social networkingrelated social networking

Barriers to AdoptionBarriers to AdoptionBarriers are at environmental, technical, and Barriers are at environmental, technical, and individual levelsindividual levelsCostCostAccessAccessInteroperability (lack of standards for)Interoperability (lack of standards for)SecuritySecurityData ownershipData ownershipCultureCulturePolicyPolicyEducationEducationConsumer confidence and trustConsumer confidence and trustUncertain value realization Uncertain value realization Uncertain market demandUncertain market demand

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One Step at a TimeOne Step at a TimeGoal is transformation, not merely automation of a Goal is transformation, not merely automation of a ““brokenbroken””systemsystemConsequently we canConsequently we can’’t just spend more and ignore current t just spend more and ignore current ineffective and inefficient systemineffective and inefficient system

ConsiderationsConsiderations::Technology must be used to transform system Technology must be used to transform system –– a means, a means, not an endnot an endConsider incremental change Consider incremental change –– ““restrained incrementalismrestrained incrementalism””Seek common priorities and valuesSeek common priorities and valuesShift incentive strategies toward meaningful patient Shift incentive strategies toward meaningful patient outcomesoutcomesFocus on functional componentsFocus on functional componentsFund state effortsFund state effortsEmphasize ongoing research, including comparative Emphasize ongoing research, including comparative effectivenesseffectiveness

(Mark Frisse, 2009)(Mark Frisse, 2009)

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Endorsed Patient & Consumer Endorsed Patient & Consumer Principles Principles (Markle Foundation)(Markle Foundation)Individuals should be able to:Individuals should be able to:

Access their health and medical data conveniently and affordablyAccess their health and medical data conveniently and affordably

Authorize when and with whom their health data are sharedAuthorize when and with whom their health data are sharedDesignate someone else, such as a loved one, to have access and Designate someone else, such as a loved one, to have access and exercise control over how their records are sharedexercise control over how their records are shared

Receive easily understood information about all the ways their Receive easily understood information about all the ways their health data may be used or sharedhealth data may be used or shared

Review which entities have had access to their personal health dReview which entities have had access to their personal health dataata

andandElectronic health data exchanges must protect the integrity, Electronic health data exchanges must protect the integrity, security, privacy and confidentiality of an individuals informatsecurity, privacy and confidentiality of an individuals informationion

Independent bodies, accountable to the public, should oversee loIndependent bodies, accountable to the public, should oversee local cal and nationwide electronic health data exchanges. No single and nationwide electronic health data exchanges. No single stakeholder group should dominate these oversight bodies, and stakeholder group should dominate these oversight bodies, and consumer representatives selected by their peers should participconsumer representatives selected by their peers should participate ate as full voting members.as full voting members.

Do Providers Really Want Do Providers Really Want Empowered Consumers?Empowered Consumers?

PHRs are an enabling technologyPHRs are an enabling technology

PHR is likely to transform the providerPHR is likely to transform the provider--patient relationshippatient relationship

Technopoly: The Surrender of Culture to Technopoly: The Surrender of Culture to Technology (Postman, 1992)Technology (Postman, 1992)Stethoscope had a profound impact on Stethoscope had a profound impact on care; limited the value of the subjective care; limited the value of the subjective (what the patient says) (what the patient says) PHR has the power to create a more PHR has the power to create a more ““balancedbalanced”” view of the patient.view of the patient.

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Completed Research: Completed Research: Things We KnowThings We Know

Consumer acceptanceConsumer acceptanceProvider acceptanceProvider acceptanceDesired functionalityDesired functionalityMany vendors and providers Many vendors and providers already have tools availablealready have tools available

Research Gaps: Things We Research Gaps: Things We Need to Better UnderstandNeed to Better UnderstandHow to best move from concept to practical How to best move from concept to practical application?application?

Function evaluation Function evaluation –– collection, sharing, collection, sharing, exchange and selfexchange and self--management of informationmanagement of informationAdoption and attitudes Adoption and attitudes –– focus on specific focus on specific populations, trends, associated factors populations, trends, associated factors Privacy and security Privacy and security –– data control, balance data control, balance between access and security,between access and security,Architecture Architecture –– data, infrastructure and data, infrastructure and applicationsapplicationsCost and the business case for PHRCost and the business case for PHR

Kaelber, Jha, Johnston, Middleton and Bates, 2008Kaelber, Jha, Johnston, Middleton and Bates, 2008

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Early ExperiencesEarly Experiences

Epic Systems Epic Systems –– MyChartMyChartBeth Israel Deaconess Patient SiteBeth Israel Deaconess Patient SiteChildren's Hospital of Boston Children's Hospital of Boston –– IndivoIndivo••Halamka, Mandl & Tang 2008Halamka, Mandl & Tang 2008

Minnesota experience HIEMinnesota experience HIEMassachusetts eHealth Collaborative Massachusetts eHealth Collaborative (MAeHC)(MAeHC)New York City Primary Care Information New York City Primary Care Information Project (PCIP)Project (PCIP)VA VA –– MyHealthMyHealtheeVetVetSocial Media reshaping healthcare Social Media reshaping healthcare

RHIOsRHIOs

Despite limited empirical evidence Despite limited empirical evidence that HIT alone will deliver cost that HIT alone will deliver cost savings, federal and state savings, federal and state policymakers are promoting health policymakers are promoting health information exchange (HIE)information exchange (HIE)Vision of a National Health Vision of a National Health Information network (NHIN)Information network (NHIN)NHIN relies on Regional Health NHIN relies on Regional Health Information Organizations (RHIOs)Information Organizations (RHIOs)

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RHIOsRHIOs

National Alliance for Health Information National Alliance for Health Information Technology (NAHIT) study (2008)Technology (NAHIT) study (2008)171 RHIOs responded to survey (83% 171 RHIOs responded to survey (83% response rate) response rate) –– of these, 131 met criteria of these, 131 met criteria for operational RHIO e.g. HIE for >5,000 ptsfor operational RHIO e.g. HIE for >5,000 pts55 operational RHIOs; 12 newly operational, 55 operational RHIOs; 12 newly operational, 42 in planning stage and 34 had pursued 42 in planning stage and 34 had pursued HIE but were no longer (20% failure rate)HIE but were no longer (20% failure rate)Most focused on exchange of test results, Most focused on exchange of test results, inpatient data and medication lists, not inpatient data and medication lists, not vision of comprehensive data exchangevision of comprehensive data exchangeLack of funding identified as most important Lack of funding identified as most important barrierbarrier

The Nationwide Health The Nationwide Health Information Network (NHIN)Information Network (NHIN)

Exchange of electronic health information to:Exchange of electronic health information to:•• improve the quality / efficiency of health careimprove the quality / efficiency of health care•• empower the individual patientempower the individual patient•• support public health, emergency preparedness, support public health, emergency preparedness,

and researchand research

Requires common elements:Requires common elements:minimum set of detailed standards minimum set of detailed standards -- a shared a shared network network ““dial tonedial tone””support for consumer / intersupport for consumer / inter--organizational trustorganizational trustvalue of exchanging data exceeds the costvalue of exchanging data exceeds the cost

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IT and Public Health IT and Public Health EmergenciesEmergencies

Initial detection – find first event

Situational awareness and subsequent detection – identifying other possible cases

Quantification – how many people are ill?

Localization – where is it taking place?

Investigation – demographics, etiology, conveyance

Outbreak management – confirming true cases, tracking who was exposed

Countermeasure administration –prevention information, isolation, prophylaxis, vaccination

Initial detection Initial detection –– find first eventfind first event

Situational awareness and Situational awareness and subsequent detection subsequent detection –– identifying identifying other possible casesother possible cases

Quantification Quantification –– how many people are how many people are ill?ill?

Localization Localization –– where is it taking where is it taking place?place?

Investigation Investigation –– demographics, demographics, etiology, conveyanceetiology, conveyance

Outbreak management Outbreak management –– confirming confirming true cases, tracking who was exposedtrue cases, tracking who was exposed

Countermeasure administration Countermeasure administration ––prevention information, isolation, prevention information, isolation, prophylaxis, vaccinationprophylaxis, vaccination Bogatti SP. Reprinted in MMWR 5-9-03

SARS cases in Singapore

Health Record BankingHealth Record Banking

Health record systems used today for Health record systems used today for recording and maintaining health records are recording and maintaining health records are ““nonstandard, partitioned, and consumernonstandard, partitioned, and consumer--hostilehostile”” (Gold, JD and Ball, MJ, 2007)(Gold, JD and Ball, MJ, 2007)

Proposed alternative to RHIOs and NHINProposed alternative to RHIOs and NHINEmulate commercial bankingEmulate commercial bankingProvide a means for financial independence and a Provide a means for financial independence and a mechanism for fostering medical researchmechanism for fostering medical researchStructured to have Structured to have envelope informationenvelope information(metadata used for searching record) and (metadata used for searching record) and letter letter contentscontents (complete data)(complete data)

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Health Record Banking Health Record Banking IssuesIssues

Standardized data entry, sharing and interoperabilityStandardized data entry, sharing and interoperabilityInformation security and HIPAA standardsInformation security and HIPAA standardsWorkflow and data transferWorkflow and data transferBusiness incentives and development of banking Business incentives and development of banking modelmodelPatient identification and record matchingPatient identification and record matchingLegal, ethical and legislative concernsLegal, ethical and legislative concernsStakeholder acceptance and acceptance thresholdStakeholder acceptance and acceptance thresholdStandardization of ePHR format and UMLS record Standardization of ePHR format and UMLS record indexingindexingArchitectural designArchitectural designDetermination of critical challenges and project Determination of critical challenges and project implementation sequenceimplementation sequence

Potential Future Potential Future ApplicationsApplications

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Questions Questions and Discussionand Discussion