"New Models By Lygeia Ricciardi, Farzad Mostashari, Judy Murphy, Jodi G. Daniel, and Erin P. Siminerio doi: 10.1377/hlthaff.2012.1216 HEALTH AFFAIRS 32, NO. 2 (2013): 376–384 A National Action Plan To ©2013 Project HOPE— The People-to-People Health Foundation, Inc. Support Consumer Engagement Via E-Health Lygeia Ricciardi is the ABSTRACT Patient-centered care is considered one pillar of a high- director of the Office of Consumer eHealth in the performing, high-quality health care system. It is a key component of Office of the National Coordinator for Health many efforts to transform care and achieve better population health. Information Technology (ONC), Expansion of health information technology and consumer e-health Department of Health and Human Services, in tools—electronic tools and services such as secure e-mail messaging Washington, D.C. between patients and providers, or mobile health apps—have created new Farzad Mostashari is the opportunities for individuals to participate actively in monitoring and national coordinator for health directing their health and health care. The Office of the National information technology at the ONC. Coordinator for Health Information Technology in the Department of Health and Human Services leads the strategy to increase electronic Judy Murphy is deputy national coordinator for access to health information, support the development of tools that programs and policy at the enable people to take action with that information, and shift attitudes ONC. related to the traditional roles of patients and providers. In this article Jodi G. Daniel is the director we review recent evidence in support of consumer e-health and present of the Office of Policy and Planning in the ONC. the federal strategy to promote advances in consumer e-health to increase patient engagement, improve individual health, and achieve broader Erin P. Siminerio (erin [email protected]) is a policy health care system improvements. analyst in the Office of Consumer eHealth in the ONC. atient-centered care is widely con- consumer e-health as a broad category of elec- sidered one pillar of a high- tronic tools and services that are primarily performing, high-quality health consumer orientedbut that overlap with health 1 care system. Itis a key component information technology, a term more conven- P of many efforts to transform care tionally used in the context of technology for and achieve better population health. health care providers. Engaging patients and their caregivers to play E-health tools include secure Internet portals anactiveroleintheirhealthisacriticalelement toenablepatientstoaccessinformationintheir of patient-centered care, yet patients are an EHRs;personalhealthrecords;patient-provider underused resource in the health care system. secure e-mail messaging; personal monitoring Giving patients both access to their health devices;mobilehealthapps;andInternet-based information and electronic tools for using that resources for health education, information, informationcanbetterpositionthemtopartici- advice, and peer support. The term consumers patemorefullyintheircare:toself-managetheir encompasses patients, families, and caregivers, conditions,coordinatecareacrossmultiplepro- regardless of health status, whether or not they viders, and improve communication with their are actively receiving health care services. careteams—thosedirectlyinvolvedintheircare. The full potential of consumer e-health is The electronic health record (EHR) and con- far from realized and may not even yet be sumer e-health tools are changing the ways in fullyunderstood.However,concurrentadvance- whichpatientsandprovidersinteract.Wedefine ments in health information technology 376 Health Affairs February 2013 32:2 Downloaded from content.healthaffairs.org by Health Affairs on February 17, 2013 by Rachel McCartneyadoptionbyproviders,thedevelopmentofcon- more about and manage their own health—are sumer technologies, and national health care morelikelythanotherstoparticipateinpreven- policy—combined with broader social changes tiveandhealthypractices,self-managetheircon- 8–10 in consumers’ expectations—have created ideal ditions, and achieve better outcomes. An conditions in which to foster its growth. AARPstudyofpatientswithchronicconditions, The Office of the National Coordinator for foundthatthemore“activated”patients—thatis, Health Information Technology, part of the thosewiththeknowledge,skills,andconfidence Department of Health and Human Services, essential to managing their own health care— is charged with developing and supporting were more than three times less likely to suffer this movement. The Office of the National a negative health consequence because of poor Coordinator has primarily focused on support- communication among providers, more than ing the adoption and meaningful use of health twiceaslikelytoavoidareadmissiontothehos- information technology by health care pro- pital, and nearly half as likely to experience a 11 viders. However, it also seeks to empower indi- medicalerrorcomparedtolessactivatedones. viduals to improve their health and health care Theappeal,reach,andpotentialofe-healthto 2 through health information technology. The engage diverse populations appear strong. Office of Consumer eHealth at the Office of the Despite concerns about the “digital divide,” a National Coordinator leads these efforts. 2012 study found that age, education, and in- Inthisarticlewereviewtheevidencesupport- come levels are not accurate indicators of pa- ingconsumerengagementviae-healthasaway tients’ willingness to adopt personal health re- 12 toachievebetterhealthandhealthcare;explain cords. Contrary to stereotypes, 17 percent of whynowisacriticaltimetopromoteadvancesin seniorsusepersonalhealthrecords—thehighest 5 e-health; and outline the federal strategy for proportion of any age group. Use is also rela- doing so. tively common among consumers with chronic conditions, who are also active users of online resources such as discussion forums and chat 13 Why Engage Consumers Via rooms. E-Health? Patient engagement via e-health may be an Although additional research in this field is undervaluedtoolforreducinghealthdisparities. needed,surveysindicatethatamajorityofboth Arecentstudysuggestedthatraisingpatientac- patients and providers support using health in- tivationratesamongHispanicAmericanstothe formation technology to improve patient care level of those rates among white Americans andprefercomputerizedmeanstosharepatient woulddecreasethepercentageofunmetmedical informationwitheachother.However,relatively needwithintheHispanicpopulationbyabouta 14 low numbers of patients have asked for their fifth. 3 information in an electronic format. In addition, one national survey showed that A major obstacle to greater use of health in- low-income,chronicallyillpeoplewhousedper- formation in electronic form appears to be lack sonalhealthrecordsreportedagreatersenseof ofaccess,notlackofinterest.Whereas65percent connection with their providers and more pos- of US adults in one survey considered online itive behavior changes than members of other 15 access to their health information important, demographic groups. only 17 percent of patients had online access. GrowingEvidenceBaseSupportsConsum- Also, 85percentof participantswantedtocom- er Engagement Via E-Health A 2012 report municate with their providers by phone or e- ontheevidencefortheuseofhealthinformation mail, yet only 10 percent had the capability to technology to enable patient-centered care— 4 doso. Inanothersurvey,twooutofthreepeople improving shared decision making, patient- saidthattheywouldevenconsiderswitchingtoa cliniciancommunication,andaccesstomedical 5 provider who offers online access. information by patients—found important evi- Most adult consumers of health care in the dence that these applications have an overall United States are motivated to take on the role positive effect on several types of health care 16 ofmanagingtheirhealthandhealthcareandare outcomes. interested in using e-health tools such as per- People who use e-health resources feel better sonal healthrecords and EHRs toachievethese prepared for clinical encounters, ask more- 5,6 17 goals. When given electronic access to health relevant questions, know more about their information,thevastmajorityofpeopleactually health care, and are more likely to take steps 7 use it. to improve their health, compared to those 18 More-Engaged Patients Get Better who do not. The OpenNotes initiative, which Outcomes Many studies have shown that en- gives patients online access to physicians’ visit gagedpatients—thosewhoactivelyseektoknow notes,reportedthatpatientsfeltmoreincontrol February 2013 32:2 Health Affairs 377 Downloaded from content.healthaffairs.org by Health Affairs on February 17, 2013 by Rachel McCartneyNew Models of their care and demonstrated increased medi- record reported interest in using one if it were 15 cation adherence, while providers’ concerns connected to their doctor’s office. about increased workload and confused or of- Consumers’ Financial Responsibility In 7 fended patients were largely unwarranted. Health Care Is Rising The shift toward new Useofsecurepatient-cliniciane-mailhasbeen payment models such as bundled payment and 19 associatedwithimprovedqualityoutcomes and accountablecareorganizationsthatrewardpro- 20,21 excellent patient satisfaction. Personal vidersbasedonhealthoutcomesratherthanvol- health records have also proved to be effective ume oftransactionsputs agreateremphasison 22 toolsforincreasinguseofpreventiveservices, preventionandwellnessrelativetosicknesscare. 23 improvingself-managementofbloodpressure, To achieve that goal, these approaches encour- 24 and controlling blood glucose. ageproviderstoenlisttheirpatientsaspartners When patients participate in online health incareandtousetechnologytoaccessandana- communities, they report gains in knowledge, lyze information about health care treatments self-efficacy, and social support. In a survey of and costs. members of PatientsLikeMe.com, an online pa- tientcommunity,76percentagreedthatthesite helpedthembetterunderstandtheirprognosis, The Federal Strategy For Consumer and 59 percent found it helpful in managing E-Health 25 symptoms. TheroleoftheOfficeoftheNationalCoordinator inadvancingconsumere-healthisprimarilyasa catalyst and coordinator, providing incentives Why Act Now? and support to others—such as patients, pro- Severalcurrenttrendssuggestastrongpotential viders, and technology developers—who are at for growth in the area of consumer e-health. the forefront of furthering consumer engage- Technology Is Rapidly Democratizing ment via e-health. The office also coordinates Information We anticipate that the trends to- federal policies, investments, and activities to ward democratization and consumer engage- advance this goal. ment evident today in areas such as banking, In some cases, such as the Centers for travel planning, and shopping will expand to MedicareandMedicaidServices’EHRIncentive health care as consumers grow to expect a sim- Programs—also known as “meaningful use”— ilar level of access, control, accountability, and providersmustdemonstratethattheyareengag- transparency related to health services. ingpatientsandfamilymembersintheirhealth Already 80 percent of US Internet users have careinordertoqualifyforfinancialincentivesto 26 searched for health information online. support the adoption of EHRs. Patients and caregivers are also finding each The Office of the National Coordinator has other online: 34 percent of Internet users have developed the “Three A’s” strategy to fulfill its read about other people’s health and medical goaltoempowerpeopletoimprovetheirhealth experiences online, and 18 percent of Internet and health care through health information usershavegoneonlinetofindotherswhoshare technology. The three prongs of the strategy 24 their health condition or concern. are to increase patients’ Access to their health There is also a recent explosion of new prod- information;toenableconsumerstotakeAction uctsandservicesdesignedtoengageconsumers with that information; and to shift Attitudes so bysimplifyingthecollection,integration,analy- thatpatientsandprovidersthinkandactaspart- sis,andsharingofhealthdata,bolsteredbythe ners in managing health and health care using proliferationofcheaper,smaller,andfasterelec- healthinformationtechnology.Thesethreeele- 27 tronic devices. ments of the strategy are interdependent. Health Information Technology Adoption Increase Access Of the three strategic ele- Is IncreasingInarecentnationalstudy,72per- ments, the Office of the National Coordinator cent of physicians reported that they had has the greatest direct influence on consumers’ adopted some type of electronic health record access to their health data, which it supports 28 system. Also, the percentage of hospitals with through the Medicare and Medicaid EHR suchsystemsmorethandoubledfrom16percent IncentiveProgramsandtheBlueButtonPledge 29 in 2009 to 35 percent in 2011. Program. IncreasedprovideruseofEHRs—promptedin ?EHR INCENTIVE PROGRAMS (MEANINGFUL partbyincentiveprograms—islikelytocatalyze USE): The Medicare and Medicaid EHR consumerengagementashealthinformationbe- Incentive Programs provide billions of dollars comesmorereadily availableinelectronicform in financial incentives to eligible professionals anddirectlyaccessibletopatients.Inonestudy, and hospitals that demonstrate “meaningful six of ten consumers without a personal health use” of certified EHR technology in specified 378 Health Affairs February 2013 32:2 Downloaded from content.healthaffairs.org by Health Affairs on February 17, 2013 by Rachel McCartneywaysthatimprovepatientcare.Compliancewith havealreadyusedBlueButtontodownloadtheir 36 rules for meaningful use of EHRs is voluntary, health data. To helptheOffice of theNational andincentivesareavailableonlytoeligiblepro- CoordinatoranditspartnersexpandBlueButton vidersandhospitals.However,theimpactofthe nationwide, the White House designated Blue programissignificant.In2012two-thirdsofof- Button as one of five high-impact projects and fice-basedphysiciansreportedthattheyplanned allocatedseveralPresidentialInnovationFellows 37 toapply,oralreadyhadapplied,formeaningful- to support it. 30 useincentives, and85percentofhospitalssur- TheBlueButtonPledgeProgramnowincludes 29 veyed indicated that they plan to attest. morethan450organizationsthatarecommitted Meaningful-userequirementsarebeingdevel- to learning and collaborating in efforts to in- oped through several stages. The first stage, ef- creasepatientaccessto,anduseof,healthdata. fective for hospitals in October 2010 and for ThePledgeProgram,launchedin2011,includes eligible professionals in January 2011, required “data holders”—such as health care providers health care providers to give patients paper or andinsurers—whopledgetoliberatehealthdata, electronic access to clinical summaries of their and“non–dataholders”—suchassoftwaredevel- officevisits,accesstoanelectroniccopyoftheir opers and consumer advocacy organizations— health information, and hospital discharge who pledge to educate consumers about the 31 instructions. value of getting and using their health data. The second-stage requirements, effective in Forexample,twoorganizations—theAlliance October 2013 for hospitals and in January for Nursing Informatics and the American 2014 for eligible physicians, require providers Nurses Association—teamed up in 2012 to host tousesecuree-mailwithpatientsandtoprovide “Ask for Your Record Week,” a campaign to patientswithawaytoview,download,andtrans- encourage nurses to adopt personal health rec- 32 mit their health information to a third party. ords for themselves and to equip them to talk Under this provision, patients will be able not withpatientsabouttheirownexperiencesusing 38 onlytoviewtheirhealthinformationonline,but e-health. alsotoexporttheirdatafromEHRsinstructured Enable Action Initiatives in this second and human-readable formats; share those data elementofthe “ThreeA’s”supportthedevelop- with others; and use tools and applications to ment of an ecosystem of tools and services that store, analyze, or otherwise make use of their help consumers take action using their health information. The second stage also establishes information.Theliberation of electronichealth thresholds for the proportion of patients using information, bolstered by the Office of the thesefunctions,whichwillencourageproviders National Coordinator’s access-related initia- to promote their use. tives, has the potential to create an expanded For thethirdstage,the Office of theNational market for tools that empower patients. Coordinator is exploring ways for providers to ?SUPPORTING DEVELOPERS WHO BUILD incorporate data from patients, including data E-HEALTH TOOLS: The Office of the National fromremotedevices,backintotheEHR,andto Coordinator, the White House, and the Depart- enablepatientsto requestamendmentstotheir ment of Veterans Affairs are collaborating to 33 records online. encourage technology developers to build tools ?BLUE BUTTON PLEDGE PROGRAM: TheBlue thatenableconsumerstouseBlueButtonhealth Button Pledge Program is a voluntary mech- data, and togrowa newmarketfor these appli- anismforsupportingconsumers’accesstotheir cations. Through the Automate Blue Button 39 healthdata.TheBlueButtonicon,usedinalarge Initiative, the Office of the National Coor- communityoforganizationsincludingthoseeli- dinatorisprovidingaforumforopencollabora- gible for the EHR Incentive Programs, signals tion withmorethansixty-eightorganizations— that consumers can download their health data ranging from Microsoft, GE, and other large 34 at the site that displays this icon. Clicking the corporations to smaller start-ups such as Blue Button icon provides a way for patients to HumetrixandKinergy—toestablishcommonin- view and download digital health records or in- dustry approaches and standards for automati- surance claims. cally updated health data, supplied in both ma- First deployed within the Department of chine- and human-readable formats. VeteransAffairsin2010,BlueButtonisnowused In addition, the Office of the National by the Department of Defense; Medicare; and Coordinator is working with other agencies numerous private health insurance providers and offices, including the Food and Drug Ad- including Aetna, UnitedHealthcare, and other ministration and Federal Trade Commission, participants in the Federal Health Employee to ensure that regulations and policies support 35 Benefits program. At the Department of innovation of consumer e-health tools and to Veterans Affairs, more than one million people help innovators better understand relevant February 2013 32:2 Health Affairs 379 Downloaded from content.healthaffairs.org by Health Affairs on February 17, 2013 by Rachel McCartneyNew Models regulatory requirements. by e-health. For example, patients need to feel Periodic “challenges” issued by the Office of comfortablerequestingelectronicaccesstotheir theNationalCoordinatorrewardinnovatorswho healthrecords,askingprovidersquestions,shar- developsolutionstospecifichealthinformation ingtheirownhealthknowledge,andweighingin technologyordataexchange,presentation,and on treatment options. A cultural shift—among 40 access obstacles. Recent challenges include a patients and providers—is necessary to support 41 Health Record Design contest that invited these kinds of behavior. designers to rethink how the medical record is ?CLARIFYING PATIENTS’ RIGHT TO ACCESS presented visually; and a Blue Button Mash-Up HEALTH INFORMATION: The Office for Civil Challenge to create mobile applications that Rights in the Department of Health and combineanindividual’sBlueButtonhealthdata Human Services recently launched a campaign withothertypesofdatatomaketheinformation to build public awareness of individuals’ legal 42 moreusableandmeaningful. Forexample,the right to access their own health information winningiBlueButtonappincludesfeaturessuch under the Health Insurance Portability and as optimized displays and dashboards, medica- Accountability Act of 1996 Privacy Rule, in the tionlook-up,andnewtoolstodownloadorprint formatinwhichtheyrequestit—includingelec- health information. tronic, if available. In May 2012 the Office for ?FOSTERING TRUST AND PROTECTING Civil Rights released a memo detailing these PRIVACY IN E-HEALTH TOOLS: Tohelpconsum- rights and directing consumers to educational 45 ersunderstandandcomparehowcompaniesof- resources. feringpersonalhealthrecordsprotectindividual Failuretorespecttheserightscanleadtosub- health information, the Office of the National stantialfines.Forexample,onehealthcarepro- Coordinator developed a web-based Model vidercompany,CignetHealthofMaryland,was Privacy Notice for personal health records that fined$4.3millionforfailingtoprovidepatients 46 companiesmayusetodescribetheirownpractic- with access to their medical records. es.Similartoa“NutritionFacts”or“DrugFacts” ?EDUCATIONAL RESOURCES: The HealthIT label, the Model Notice is intended to present .gov website serves as a “one-stop shop” for pa- complexinformationabouttheprivacyofhealth tients and families to learn about health infor- data in an accessible, standardized, and trans- mation technology and e-health tools, and to parentway.Althoughuseofthenoticeisvolun- share experiences about how e-health has ben- tary,theFederalTradeCommissionhasauthor- efitedrealpatients.Thesitealsooffersatoolkit ity to make sure that companies engage in fororganizationstouseintheiroutreachefforts, actions that are consistent with those they de- including an animated video intended to make scribeviathenotice.MicrosoftHealthVaultand learning about health information technology 47 NoMoreClipboard are voluntarily using the fun and accessible. Model Notice. ?THE POWER OF STORYTELLING: Justaspro- ?PILOT PROGRAMS: TheOfficeoftheNation- viders,patients,andfamiliesoftenfindvaluable al Coordinator has provided funding to seven- health information through peer-to-peer con- teen so-called Beacon communities around the nections, they can also gain insight into health country that are working to increase the use of informationtechnologythroughpersonalnarra- health information technology to achieve spe- tivesandconnections.TheOfficeoftheNational cific population health goals and to evaluate Coordinator ran a series of video contests those efforts. Through this program, the office throughout 2012 encouraging consumers to piloted a text-messaging tool called Txt4Health sharetheirstoriesabouthowhealthinformation thatconsumerscanusetoassesstheirindividual technologyimprovedtheirhealthandincreased 48 risk of diabetes and guide them in obtaining involvement in their own care. 43 follow-up care. The Office of the National Coordinator also conducted a pilot at Geisinger Health System Conclusion to evaluate the role of patients in improving Growing evidence supports the use of e-health theaccuracyoftheinformationintheirmedical to support consumer engagement to improve records. Preliminary findings suggest that pa- health and health care. The Office of the tients’ feedback is valuable and does improve NationalCoordinatorcoordinatesandcatalyzes 44 the accuracy of the information. its growth both within the government and the Shift Attitudes This final part of the Three privatesector,capitalizingontheconfluenceof A’s strategy supports the evolution of consum- severaltrendsrelatedtoinformationtechnology ers’andproviders’expectationsabout rolesrel- and healthcarepolicy, as wellas broadersocial ativetoeachother,leadingtowardalesshierar- trendsincommunicationandinformationtech- chical, more collaborative partnership, enabled nology adoption. 380 Health Affairs February 2013 32:2 Downloaded from content.healthaffairs.org by Health Affairs on February 17, 2013 by Rachel McCartney"