By Karandeep Singh, Sean R. Meyer, and John M. Westfall
Consumer-Facing Data,Information, And Tools: Self-Management Of Health In TheDigital Age
ABSTRACT Consumers have greater access to data, information, and toolsto support the management of their health than ever before. While thesheer quantity of these resources has increased exponentially over thepast decade, the accuracy of consumer-facing resources is variable, andthe value to the individual consumer remains uncertain. In general, thequality of these resources has improved, mostly because of improvementsin web and mobile technologies and efforts to restructure health caredelivery to be more patient centered. We describe the major initiativesthat have led to consumers’ increased access to both their own healthdata and performance data for health care providers and hospitals. Weexplore how search engines and crowdsourced review websites help andhinder the dissemination of medically accurate information. We highlightemerging examples of websites and apps that enable consumers to makemedical decisions more in concert with their preferences. We conclude bydescribing key limitations of consumer-facing resources and makingrecommendations for how they may best be curated and regulated.
The doctor-patient relationship his-torically has been heavily imbal-anced, with doctors being the soleparty with direct access to patients’health and medical information
about diagnoses and treatments. Thematurationof electronic health records (EHRs), patient por-tals, and websites targeting health care consum-ers has led to a rapid expansion in the numberand types of resources that consumers can use inmaking decisions about their health. At the sametime, health systems are in the midst of a majorcultural shift, recognizing that empoweringconsumers with easier access to health data, in-formation, and tools may have a number ofdownstream benefits for health outcomes andsatisfaction.1,2 As these resources become moreaccessible, patients can take amore active role inmanaging their care. Thus, patients are increas-ingly finding themselves in the role of consum-ers, where they have the opportunity (and are
often expected) tomake choices about their carein partnership with providers.In the context of health, we use the term data
to refer to facts or observations about one ormore patients, such as the results of a laboratorytest. Information consists of data that have beenaggregated or summarized in some way thatmakes them usable by consumers. Examples ofhealth information include results from searchengines on health topics or information aboutthe quality and cost of care. Tools are interactiverepresentations of data or information that pro-vide a deeper level of ongoing engagement, suchas consumer-facing health apps.
Consumers Have Greater Access ToTheir Health Data Than Ever BeforeThe adoption of EHRs and accompanyingpatient portals has greatly increased consumers’access to their own health data. The adoption of
doi: 10.1377/hlthaff.2018.05404HEALTH AFFAIRS 38,NO. 3 (2019): 352–358©2019 Project HOPE—The People-to-People HealthFoundation, Inc.
Karandeep Singh ([email protected]) is an assistantprofessor of learning healthsciences, internal medicine,and information at theUniversity of Michigan,in Ann Arbor.
Sean R. Meyer is a PhDstudent in design science atthe University of Michigan.
John M. Westfall is a seniorscholar in family medicine atthe Eugene S. Farley Jr. HealthPolicy Center, University ofColorado, in Aurora, and chairof family medicine andmedical director for wholeperson care at the SantaClara Valley Medical CenterHealth and Hospital System,in San Jose, California.
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EHRs was largely driven by financial incentivesput in place by the Health Information Technol-ogy for Economic and Clinical Health (HITECH)Act, part of the AmericanRecovery andReinvest-ment Act of 2009. The incentives were designedto drive health care professionals to adopt“certified” EHRs designed to meaningfully im-prove patient care, although the set of functionsrequired for certification was not defined at theoutset. Discussions organized by the ConsumerEngagement Workgroup of the Markle Founda-tion, a nonprofit organization focused on healthcare quality improvement and adoption ofemerging technologies, led to the idea ofmakingpatient records downloadable at the click of abutton.3 This idea came to be known as the BlueButton initiative.When theOffice of theNationalCoordinator for Health Information Technologywas tasked with defining functions of an EHRthat would constitute “meaningful use” undertheHITECHAct, the ability to viewonline, down-load, and transmit patient health data withinfour business days of the data being availableto the provider was included as a core objective,enshrining the Blue Button initiative in nationalpolicy. Inclusion of Blue Button functionalityin an EHR became a required prerequisite forhealth care professionals to become eligible forincentive payments, which drove EHR vendorsto quickly add this functionality. The VeteransHealth Administration (VHA) added the BlueButton to its patient portal in 2010. This wassignificant because the VHA is the largest inte-grated health system in the United States anddoes not stand to benefit from the financial in-centives included in the HITECH Act. Subse-quent evaluations found that a third of veteranshad used the Blue Button, and that nearly three-quarters of users felt that using it helped thembetter understand their health.4 One veteran’sexperience with the Blue Button illustrates itspotential impact on self-management of health:“The first time I used it Iwas really happybecauseI was participating inmy health care. I mean youcan actually see real timewhat’s going on.”5Withthe success of Blue Button as a way of download-ing patient records, the focus of the initiative—now termedBlue Button 2.0—has shifted towardintegrating patient records with apps to supportpatient care and research.6
Although the Blue Button initiative gave pa-tients direct access to much of their health infor-mation,4 one area that this initiative avoided al-together was access to doctors’ notes because ofconcerns over potential negative consequencesrelated to patients not understanding medicaljargon in thenotes.7 To explore these issues, over100 primary care physicians at Beth Israel Dea-coness Medical Center, Geisinger Health, and
Harborview Medical Center volunteered to par-ticipate in the OpenNotes demonstration proj-ect,whichwasdesigned to explore the impacts ofeasily accessible doctors’ notes on both the pa-tients and providers. The project was founded byTom Delbanco and Jan Walker of Harvard Medi-cal School and initially funded by the RobertWoodJohnsonFoundation.Surveys demonstrat-ed that while patients favored open notes, pri-mary care physicians’ opinions of sharing theirnotes varied.8 A follow-up quasi-experimentalstudy evaluating the impact of OpenNotes foundthat “patients accessed visit notes frequently,a large majority reported clinically relevantbenefits and minimal concerns, and virtuallyall patients wanted the practice to continue.”9
Through adoption by EHR vendors, over thir-ty-threemillion patients nowhave access to theirdoctors’ notes.10 Organizers of the OpenNotesdemonstration say that doctors should allow pa-tients to provide feedback on the notes to furtherreinforce the collaborative relationship betweendoctors and patients.11
Patients are increasingly generating their ownhealth data as well, ranging from step counts toelectrocardiograms. Pedometry has long beenavailable through specialized devices, but its in-troduction into iOS andAndroid smartphones in2013 has turnedmost modern smartphones intorelatively accurate pedometers.12 In 2014 Apple’sHealthKit enabled apps to store, access, and ex-change tracked health data directly on the iOSoperating system. This is particularly beneficialfor consumers using digital health-orienteddevices such as weight scales and glucometers.Thesedevices typically share theirdatawirelesslywith companion smartphone apps using Blue-tooth, and easing information exchange be-tween apps makes it possible for one app to pro-vide medical advice based on a measurementtaken by a different app.More advanced medical sensing capabilities
are also being incorporated into consumer-friendly devices. In 2012 AliveCor released asmartphone case—approved by the Food andDrug Administration (FDA)—with the capabilityof measuring a single-lead electrocardiogramfor the identification of cardiac arrhythmias. InNovember 2017 this functionality was extendedto smartwatches when KardiaBand became thefirst FDA-approved medical device accessory forApple’s smartwatch for the detection of atrialfibrillation.13 In less than a year Apple integratedthis functionality directly into its smartwatchesalongside other health-oriented functionalityenabling the detection of falls.14 Thus, smart-watches appear poised to give consumers accessto health data that previously required special-ized medical devices.
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Online Tools Make Accurate HealthInformation More Accessible ToConsumersThe internet has long been a source of healthinformation for consumers. Although the begin-nings of this phenomenon are not well docu-mented, the Pew Research Center’s first pollon the subject, conducted in 2000, found that55 percent of internet users had searched forhealth information online at a time when only43 percent of Americans had used the internet.15
By2013, 59percent ofUSadults had searched forhealth information online, and 77 percent ofsuch searches began on a general web searchengine such as Google or Bing.16,17 The phrase“Dr. Google” has been used to describe the phe-nomenon of relying on a general search engineto find health information.18 In 2013 over a thirdof US adults reported going online to determinewhat medical condition they or someone elsemight have.17
Over the past twenty years a number of spe-cialized search engines have also beendevelopedto help patients understand and make decisionsbased on the quality and cost of care. HospitalCompare was developed in 2002 by the Centersfor Medicare and Medicaid Services (CMS) tohelp patients select hospitals.19,20 Since HospitalCompare’s inception, its scope has expanded toinclude process outcomes, patient satisfactionmeasures, readmission rates, and surgical out-comes. Hospitals are incentivized to measureand report these data to CMS through the Hos-pital Value-Based Purchasing Program, whichrewards hospitals for strong or improving per-formance on a variety of quality measures. TheU.S. News andWorld Report hospital rankings usethis data along with Medicare administrativeclaims data, American Hospital Association An-nual Survey data, and publicly available clinicalregistry data to rank hospitals across multiplespecialties.21 There is mounting evidence thatwebsites such as Yelp, where consumers raterestaurants and other businesses, may be usefulin measuring aspects of hospital quality directlyrelevant to patients. Studies evaluating both theYelp star ratings as well as the textual content ofYelp reviews found significant correlations withitems in the Hospital Consumer Assessment ofHealthcare Providers and Systems (HCAHPS)survey, which is used by Hospital Compare toprovide a consumer perspective on hospitalquality.22–24 In 2015 the nonprofit organizationProPublica released a surgeon scorecard to helpconsumers compare case volume and complica-tion rates for individual surgeons across a largespectrumof surgeries.25 In contrast tootherdata-driven review sites, the ProPublica scorecardwasnotable because it enabled consumers to com-
pare individual physicians.Anumber of search engines also focus onprice
transparency in health. Individualized price in-formation is often difficult for consumers to ob-tain because costs are often negotiated betweenproviders, hospitals, and insurance companies,and these vary by region.Well-known resourcesfor comparing prices include Healthcare Blue-book, which provides price information for pro-cedures; FAIR Health, which uses billed recordsto estimate medical and dental costs; Amino,which uses claims data from both private andgovernment insurers to estimate procedurecosts; GoodRx and Blink Health, which provideprice information on generic prescription med-ications; ClearHealthCosts, which was createdby journalists and draws from a combinationof cash, government, and crowdsourced prices;and Guroo, which provides national, state, andlocal cost and quality information for commonhealth conditions and services.26–28 Search en-gines forprescriptionmedicationshave emergedas a result of both the rising popularity of onlineshopping and the opaque pricing at retail phar-macies.29
Interactive Tools Have Potential ToTransform How Consumers ManageTheir HealthThe largest area of growth in digital health in thepast five years is the development of interactiveapps and websites that enable consumers to di-rectly participate in self-management. A Pew Re-search Center survey conducted in 2012 revealedthat 69 percent of US adults keep track of at leastone health indicator (such as weight, diet, exer-cise routine, and symptom), and 21 percent ofthose who track indicators do so using some
The largest area ofgrowth is thedevelopment ofinteractive apps andwebsites that enableconsumers to directlyparticipate in self-management.
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form of technology.30 The number of health-related mobile apps is steadily rising and nowexceeds 318,000.31 Smartphone apps are unique-ly positioned to affect consumers’ managementof their health because they are often withinphysical reach; are constantly connected to theinternet; and can provide real-time notificationsto the consumer, thus enabling a real-time feed-back loop. These apps are more accessible thanever, as over three-quarters of Americans ownsmartphones, and smartphone ownership is ris-ing among older adults (46 percent among peo-ple ages sixty-five andolder) andpeoplewith lowhousehold incomes (67 percent among house-holds earning less than $30,000per year).32 Pop-ulations targeted by these apps span the spec-trum of high-need, high-cost populations, withfunctionalities ranging from educating patientsand tracking healthmeasures to rewarding usersfor good health behaviors.33 Examples of health-oriented apps rated highly by consumers includeMyFitnessPal, Mango Health, Lose It!, and themySugr Diabetes Tracker Log. The most robustliterature supporting the role of apps in patientcare is in diabetes mellitus, where apps havebeen shown to reduce hemoglobin A1c in ran-domized controlled trials.34,35
Consumer-facing websites focused on healthhave also evolved to engage patients in receivingand providing peer support. Patient-led commu-nities and support groups are proliferatingthrough specialized platforms (such as Patients-LikeMe) and traditional social media (for exam-ple, Facebook groups).36,37 Patients using suchplatforms have reported a number of benefits,including feeling better informed on choice oftreatments and side effects.36 A minority of pa-tients withmood disorders reported that use of apeer support platform led to decreasinghospital-izations. This finding, although preliminary andin need of further confirmation, is consistent
with published literature showing that peer sup-port workers may reduce hospital admissions.38
Shared decision making, an activity thatusually involves a significant time commitmentby providers,39 is also becoming streamlinedthrough implementation via online platforms.Shared decision making involves cliniciansand patients working together to develop a careplan informed both by patients’ priorities andmedical evidence. Shared decision making ismost relevant to decisions amongmultiple med-ically appropriate treatments with different risk-benefit profiles. A prototypical example of this isprostate cancer, where the decision to treat withsurgery or radiation or to monitor the diseasedepends on a variety of patient factors. The Per-sonalized Patient Profile (P3P) is a platform forshared decision making that helps men newlydiagnosed with prostate cancer choose amongsurgery, radiation, or watchful waiting basedon their priorities and preferences.40,41 Otherexamples of tools for shared decision makinginclude decision aids for the primary preventionof heart disease and the choice of dialysis modal-ity for end-stage kidney disease.42,43
Limitations Of Digital ConsumerHealth ResourcesIn the face of remarkable growth in the digitaldata, information, and tools available to con-sumers, these resources have limitations withimportant societal implications.Patient portals have lowered the barrier for
consumers to access their health data, but theportals’ use is not clearly linked to impacts onhealth outcomes, costs, and use of healthservices.44 A systematic review identified twelverandomized controlled trials of patient portalsthat spanned several patient populations (thatis, people with diabetes, heart failure, hyperten-sion, or depression and those who used preven-tive services) with mixed results.While use of apatient portal alone did not consistently demon-strate health benefits, the small number of stud-ies that combined case management with portaluse did show benefits.44 Given that patients’interest in and ability to use portals is linkedto multiple demographic factors, using portalsto engage patients could worsen disparities incare.45 A systematic review found that patientswho are younger than age thirty-five, membersof ethnic minority groups, healthier, or less ed-ucated are the least likely to use patient portals,whereas people with disabilities and chronicconditions, frequent users of health services,and caregivers of elderly parents or childrenare the most likely to use them.Managing consumer-generateddata inpatient
Consumer-facingwebsites focused onhealth have evolved toengage patients inreceiving andproviding peersupport.
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portals is another potential problem. In Octo-ber 2014 Epic Systems, the largest EHR vendorin the US, integrated its MyChart patient portalapplication with Apple’s HealthKit. Duke Uni-versity and Mayo Clinic are known to be usingthe HealthKit functionality in conjunction withthe MyChart patient portal app, but most healthsystems are still grappling with whether to inte-grate this consumer-generateddata into theEHRwhen it may be inaccurate and disrupt the clini-cal work flow.46,47 Instead of waiting for healthsystems to figure out how to integrate consumer-derived data into the EHR, Apple is bringing theEHR data directly to consumers: In March 2018Apple announced that thirty-nine hospitalswould be integrating their EHRs directly intoconsumers’ iOS devices.48
The role of search engines as initial and some-times final sources of health information is an-other area of concern. Searches have the poten-tial to harm consumers if search results areinaccurate or misleading, and the term cyber-chondria has been used to describe an inappro-priate escalation in patients’ health concerns re-sulting from a web search.49 Focusing on theworst case at the expense of the commonplaceis one of the core conundrums in the realm ofconsumer-facing data and information. Anotherproblem lies in lay interpretation of scientificinformation. Google has been combating thisproblem by partnering with Mayo Clinic andother health partners. Sincemid-2016 searchingon Google for symptoms or medical conditionsresults in the display of reputable Mayo Clinic–derived health information alongside the usualsearch results.50
While public quality reporting is well inten-tioned, the caveats associated with each of thequality-reporting tools might not be sufficientlycommunicated to consumers. For instance, thestar rating systemusedbyHospitalComparemaypenalize hospitals that serve people of lowersocioeconomic status, who have worse healthoutcomes compared to people of higher socio-economic status.51 Linking hospital payments toquality measures has the potential to dispropor-tionately affect vulnerable populations by penal-izing the hospitals that serve them, further mar-ginalizing these populations.Another example comes from ProPublica,
whose ratings have problems with both validityand reliability. Patients cannot make an in-formed decision when the underlying informa-tion is inaccurate.52–54
Issues of transparency also extend to proprie-tary algorithms and decision tools that drivedecisions about health care and insurance. Forinstance, a patient’s health insurance rate maybe determined by an algorithm, and the factors
considered by the algorithm could have largeimpacts on the patient’s premium. In Europethe General Data Protection Regulation man-dates a “right to explanation” for algorithms thathave a substantial effect on users, giving con-sumers a right to know how the algorithmworksand to potentially opt out.55 No such regulationexists in the United States.Providers’ attempts to identify high-quality
health tools for patients have been a challenge.Prior efforts to curate digital tools have largelyfailed to increase physicians’ adoption of high-quality tools in their practices. A recent effort ledby the American Medical Association, theHealthcare Information and Management Sys-tems Society, the American Heart Association,and the DHX Group is attempting to tackle thisproblem through the formation of a group calledXcertia.56 In 2018 Xcertia released preliminaryguidelines for app privacy and security, and thegroup plans to finalize these and release appcontent, operability, and usability guidelinesin 2019.57,58
Recommendations For AddressingLimitations And Risks In DigitalResourcesAddressing the limitations and risks in consum-er-facing digital resources should be a priority.The Federal Trade Commission (FTC) regulatesdeceptive claims, while the FDA regulates appsthat function likemedical devices.Much else canbe done to improve the usefulness and safety ofdigital resources for consumers.Health systems should integrate consumer-
generated data into their EHRs, giving priorityto data elements most likely to benefit patients’health. Health systems should transparently re-port quality measures directly to consumers toalleviate concerns about inaccurate data beingused by public reporting websites. The FTCshould takeamoreactive role in theenforcementof its existing authority through the FTC Act(signed into law in 1914 and since amended)pertaining to misleading claims made by appdevelopers. Guideline-making bodies shouldinclude examples of apps or tools to engageconsumers in the implementation of recommen-dations related to the tracking of health informa-tion. The rationale underlying these recommen-dations is in the online appendix.59
ConclusionNewly empowered through data, information,and tools, consumers are better able to monitortheir health and engage health care providersin informed discussions about their care. As
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patients increasingly exercise their autonomy inmedical decisionmakingas a result ofmore read-ily available resources, health professionals havea duty to support consumers in ways that go wellbeyond the bedside.While access to digital con-sumer resources is steadily growing, a cultureshift will be required—particularly amonghealthprofessionals—before consumers and patients
fully realize the benefits. This culture shift willneed to occur in several different areas, includ-ing the integration of consumer-generated datainto clinical care, embracing transparencyaroundquality of care, andhealth careproviders’curation of tools that consumers can use tofollow through on health-focused recommen-dations. ▪
Karandeep Singh received grant supportfor this work from the National Instituteof Diabetes and Digestive and KidneyDiseases (Grant No. 5K12DK111011).
NOTES
1 Sorondo B, Allen A, Fathima S,Bayleran J, Sabbagh I. Patient portalas a tool for enhancing patient ex-perience and improving quality ofcare in primary care practices.EGEMS (Wash DC). 2017;4(1):1262.
2 Wade-Vuturo AE, Mayberry LS,Osborn CY. Secure messaging anddiabetes management: experiencesand perspectives of patient portalusers. J AmMed Inform Assoc. 2013;20(3):519–25.
3 Mohsen MO, Aziz HA. The BlueButton project: engaging patients inhealthcare by a click of a button.Perspect Health Inf Manag. 2015;12(Spring):1d.
4 Turvey C, Klein D, Fix G, Hogan TP,Woods S, Simon SR, et al. BlueButton use by patients to access andshare health record information us-ing the Department of Veterans Af-fairs’ online patient portal. J AmMed Inform Assoc. 2014;21(4):657–63.
5 Klein DM, Fix GM, Hogan TP, SimonSR, Nazi KM, Turvey CL. Use of theBlue Button online tool for sharinghealth information: qualitative in-terviews with patients and providers.J Med Internet Res. 2015;17(8):e199.
6 Centers for Medicare and MedicaidServices. Blue Button 2.0 [Internet].Baltimore (MD): CMS; [cited 2019Jan 17]. Available from: https://bluebutton.cms.gov
7 Delbanco T, Walker J, Darer JD,Elmore JG, Feldman HJ, Leveille SG,et al. Open Notes: doctors and pa-tients signing on. Ann Intern Med.2010;153(2):121–5.
8 Walker J, Leveille SG, Ngo L, VodickaE, Darer JD, Dhanireddy S, et al.Inviting patients to read their doc-tors’ notes: patients and doctors lookahead: patient and physician sur-veys. Ann Intern Med. 2011;155(12):811–9.
9 Delbanco T,Walker J, Bell SK, DarerJD, Elmore JG, Farag N, et al. In-viting patients to read their doctors’notes: a quasi-experimental studyand a look ahead. Ann Intern Med.2012;157(7):461.
10 OpenNotes. Everyone on the samepage [Internet]. Boston (MA):OpenNotes; [cited 2019 Jan 17].Available from: https://www.opennotes.org
11 Walker J, Meltsner M, Delbanco T.US experience with doctors and pa-tients sharing clinical notes. BMJ.2015;350:g7785.
12 Case MA, Burwick HA, Volpp KG,Patel MS. Accuracy of smartphoneapplications and wearable devicesfor tracking physical activity data.JAMA. 2015;313(6):625–6.
13 AliveCor [Internet]. Mountain View(CA): AliveCor; 2017. Press release,FDA clears first medical device ac-cessory for Apple Watch®; 2017 Nov30 [cited 2019 Jan 17]. Availablefrom: https://www.alivecor.com/press/press_release/fda-clears-first-medical-device-for-apple-watch/
14 Apple. Apple Watch Series 4: pro-active health monitor [Internet].Cupertino (CA): Apple; c 2019[cited 2019 Jan 17]. Availablefrom: https://www.apple.com/apple-watch-series-4/health/
15 International TelecommunicationUnion. World Telecommunication/ICT Indicators database online [In-ternet]. Geneva: ITU; c 2019 [cited2019 Jan 17]. Available from:https://www.itu.int/pub/D-IND-WTID.OL
16 Fox S, Fallows D. Internet healthresources [Internet]. Washington(DC): Pew Research Center; 2003Jul 16 [cited 2019 Jan 17]. Availablefor download from: http://www.pewinternet.org/2003/07/16/internet-health-resources/
17 Fox S, Duggan M. Health online2013 [Internet]. Washington (DC):Pew Research Center; 2013 Jan 15[cited 2019 Jan 4]. Available fordownload from: http://www.pewinternet.org/2013/01/15/health-online-2013/
18 Macneily A. Paging Dr. Google. CanUrol Assoc J. 2013;7(3–4):106–7.
19 CMS.gov. Hospital Compare [Inter-net]. Baltimore (MD): Centers forMedicare and Medicaid Services;
[last modified 2016 Oct 19; cited2019 Jan 17]. Available from:https://www.cms.gov/medicare/quality-initiatives-patient-assessment-instruments/hospitalqualityinits/hospitalcompare.html
20 Centers for Medicare and MedicaidServices. Guide to choosing a hos-pital [Internet]. Baltimore (MD):CMS; [revised 2017 Dec; cited 2019Jan 17]. Available from: https://www.medicare.gov/Pubs/pdf/10181-Guide-Choosing-Hospital.pdf
21 George A, Adams Z, Majumder A,Martin G, Harder B, Dougherty GB.Methodology: U.S. News and WorldReport 2018–2019 best hospitalsprocedures and conditions ratings[Internet]. Washington (DC): U.S.News andWorld Report; 2018 Aug 14[cited 2019 Jan 17]. Available from:https://www.usnews.com/static/documents/health/best-hospitals/BHPC_Methodology_2018-19.pdf
22 Howard P, Feyman Y.Yelp for health:using the wisdom of crowds to findhigh-quality hospitals [Internet].New York (NY): Manhattan Insti-tute; 2017 Apr [cited 2019 Jan 17].(Report No. 34). Available from:https://www.manhattan-institute.org/sites/default/files/R-PHYF-0417.pdf
23 Bardach NS, Asteria-Peñaloza R,Boscardin WJ, Dudley RA. The rela-tionship between commercial web-site ratings and traditional hospitalperformance measures in the USA.BMJ Qual Saf. 2013;22(3):194–202.
24 Ranard BL, Werner RM,Antanavicius T, Schwartz HA, SmithRJ, Meisel ZF, et al. Yelp reviews ofhospital care can supplement andinform traditional surveys of thepatient experience of care. HealthAff (Millwood). 2016;35(4):697–705.
25 Wei S, Pierce O, Allen M. Surgeonscorecard [Internet]. New York(NY): ProPublica; [cited 2019 Jan17]. Available from: https://projects.propublica.org/surgeons/
26 Healthcare Bluebook [home page onthe Internet]. Nashville (TN):
March 2019 38:3 Health Affairs 357
Healthcare Bluebook; c 2018 [cited2019 Jan 4]. Available from: https://www.healthcarebluebook.com/
27 GoodRx [home page on the Inter-net]. Santa Monica (CA): GoodRx;c 2019 [cited 2019 Jan 17]. Availablefrom: https://www.goodrx.com/
28 Partners for Truth in Health Care.Cost comparison tools [Internet].St. Louis (MO): Partners for Truth inHealth Care; c 2018 [cited 2019 Jan17]. Available from: http://www.truthinhealthcare.org/consumer-resources/cost-comparison-tools/
29 Berki SE, Richards JW, Weeks HA.Themysteries of prescription pricingin retail pharmacies. Med Care. 1977;15(3):241–50.
30 Fox S, Duggan M. Tracking forhealth [Internet]. Washington (DC):Pew Research Center; 2013 Jan 28[cited 2019 Jan 17]. Available fordownload from: http://www.pewinternet.org/2013/01/28/tracking-for-health/
31 IQVIA. The growing value of digitalhealth: evidence and impact onhuman health and the healthcaresystem. Durham (NC): IQVIA; 2017Nov 7. (Institute Report).
32 Pew Research Center. Mobile factsheet [Internet]. Washington (DC):The Center; 2018 Feb 5 [cited 2019Jan 17]. Available from: http://www.pewinternet.org/fact-sheet/mobile/
33 Singh K, Drouin K, Newmark LP, LeeJ, Faxvaag A, Rozenblum R, et al.Many mobile health apps targethigh-need, high-cost populations,but gaps remain. Health Aff(Millwood). 2016;35(12):2310–8.
34 Quinn CC, Shardell MD, Terrin ML,Barr EA, Ballew SH, Gruber-BaldiniAL. Cluster-randomized trial of amobile phone personalized behav-ioral intervention for blood glucosecontrol. Diabetes Care. 2011;34(9):1934–42.
35 Quinn CC, Clough SS, Minor JM,Lender D, Okafor MC, Gruber-Baldini A. WellDoc mobile diabetesmanagement randomized controlledtrial: change in clinical and behav-ioral outcomes and patient andphysician satisfaction. DiabetesTechnol Ther. 2008;10(3):160–8.
36 Wicks P, Massagli M, Frost J,Brownstein C, Okun S, Vaughan T,et al. Sharing health data for betteroutcomes on PatientsLikeMe. J MedInternet Res. 2010;12(2):e19.
37 Bender JL, Jimenez-Marroquin MC,Jadad AR. Seeking support onFacebook: a content analysis ofbreast cancer groups. J Med InternetRes. 2011;13(1):e16.
38 Repper J, Carter T. A review of theliterature on peer support in mental
health services. J Ment Health. 2011;20(4):392–411.
39 Holmes-Rovner M, Valade D,Orlowski C, Draus C, Nabozny-Valerio B, Keiser S. Implementingshared decision-making in routinepractice: barriers and opportunities.Health Expect. 2000;3(3):182–91.
40 Berry DL, Halpenny B, Wolpin S,Davison BJ, Ellis WJ, LoberWB, et al.Development and evaluation of thepersonal patient profile-prostate(P3P), a web-based decision supportsystem for men newly diagnosedwith localized prostate cancer. J MedInternet Res. 2010;12(4):e67.
41 Berry DL, Halpenny B, Hong F,Wolpin S, Lober WB, Russell KJ,et al. The Personal Patient Profile-Prostate decision support for menwith localized prostate cancer: amulti-center randomized trial. UrolOncol. 2013;31(7):1012–21.
42 Mayo Clinic. Cardiovascular primaryprevention choice [Internet].Rochester (MN): Mayo Clinic;[cited 2019 Jan 17]. Available from:https://shareddecisions.mayoclinic.org/decision-aid-information/decision-aids-for-chronic-disease/cardiovascular-prevention/
43 Medical Education Institute. My life,my dialysis choice [Internet].Madison (WI): MEI; c 2016[cited 2019 Jan 17]. Availablefrom: http://mydialysischoice.org/
44 Goldzweig CL, Orshansky G, PaigeNM, Towfigh AA, Haggstrom DA,Miake-Lye I, et al. Electronic patientportals: evidence on health out-comes, satisfaction, efficiency, andattitudes: a systematic review. AnnIntern Med. 2013;159(10):677–87.
45 Irizarry T, DeVito Dabbs A, CurranCR. Patient portals and patient en-gagement: a state of the sciencereview. J Med Internet Res. 2015;17(6):e148.
46 Plante TB, Urrea B, MacFarlane ZT,Blumenthal RS, Miller ER 3rd, AppelLJ, et al. Validation of the InstantBlood Pressure smartphone app.JAMA Intern Med. 2016;176(5):700–2.
47 Sheridan K. Here’s the data behindthe new Apple Watch EKG app. STAT[serial on the Internet]. 2018 Sep 13[cited 2019 Jan 17]. Available from:https://www.statnews.com/2018/09/13/heres-the-data-behind-the-new-apple-watch-ekg-app/
48 Comstock J. Apple reveals 39 hospi-tals to launch Apple Health Records.Healthcare IT News [serial on theInternet]. 2018 Mar 29 [cited 2019Jan 17]. Available from: https://www.healthcareitnews.com/news/apple-reveals-39-hospitals-launch-
apple-health-records49 White RW, Horvitz E. Cyberchon-
dria: studies of the escalation ofmedical concerns in Web search.ACM Trans Inf Syst. 2009;27(4):1–37.
50 Pinchin V. I’m feeling yucky:( searching for symptoms on Goo-gle. Google Keyword [blog on theInternet]. 2016 Jun 20 [cited 2019Jan 17]. Available from: https://www.blog.google/products/search/im-feeling-yucky-searching-for-symptoms
51 Durfey SNM, Kind AJH, Gutman R,Monteiro K, Buckingham WR,DuGoff EH, et al. Impact of risk ad-justment for socioeconomic statuson Medicare Advantage plan qualityrankings. Health Aff (Millwood).2018;37(7):1065–72.
52 Friedberg MW, Pronovost PJ,Shahian DM, Safran DG, BilimoriaKY, Elliott MN, et al. A methodo-logical critique of the ProPublicaSurgeon Scorecard. Rand Health Q.2016;5(4):1.
53 Auffenberg GB, Ghani KR,Ye Z, DhirA, Gao Y, Stork B, et al. Comparingpublicly reported surgical outcomeswith quality measures from a state-wide improvement collaborative.JAMA Surg. 2016;151(7):680–2.
54 Bekelis K, Missios S, Coy S, JohnsonJN. Does the ranking of surgeons ina publicly available online platformcorrelate with objective outcomes?J Neurosurg. 2017 Mar 17. [Epubahead of print].
55 Goodman B, Flaxman S. EuropeanUnion regulations on algorithmicdecision-making and a “right toexplanation.” AI Mag. 2017;38(3):50–7.
56 Xcertia. mHealth app guidelines[Internet]. Austin (TX): Xcertia;c 2017 [cited 2019 Jan 17]. Availablefrom: http://xcertia.org/
57 Wicklund E. Amid a flood of newmHealth apps, Xcertia looks to setstandards. mHealthIntelligence [se-rial on the Internet]. 2018 Jan 5[cited 2019 Jan 17]. Available from:https://mhealthintelligence.com/news/amid-a-flood-of-new-mhealth-apps-xcertia-looks-to-set-standards
58 Xcertia [Internet]. Austin (TX):Xcertia; 2018. Press release, Xcertiareleases latest update of its privacyand security guidelines; 2018 Oct 18[cited 2019 Jan 17]. Available from:https://www.prnewswire.com/news-releases/xcertia-releases-latest-update-of-its-privacy-and-security-guidelines-300732167.html
59 To access the appendix, click on theDetails tab of the article online.
Patients & Consumers
358 Health Affairs March 2019 38:3
Singh K, Meyer SR, Westfall JM. Consumer-facing data, information, and tools: self-management of health in the digital age. Health Aff (Millwood). 2019;38(3).
Appendix
Recommendations for Addressing Key Gaps in Consumer Resources and Rationale
We propose 4 recommendations to address some of the key gaps we have highlighted in the availability and quality of consumer resources. 1. Health systems should integrate consumer-generated data into the EHR, giving priority to data elements most likely to benefit patients’ health.
Health systems are struggling with how to integrate consumer-generated data into the EHR due to workflow concerns. However, health systems are already well-equipped to monitor certain types of health information in high-risk populations where that information is likely to result in action (e.g. daily weight monitoring in congestive heart failure patients may lead to changes in diuretic dosing). Giving high priority to integration of consumer-generated data in these specific patient populations is likely to cause the least amount of workflow disruption with the greatest amount of patient benefit.
2. Health systems should transparently report quality measures directly to consumers to alleviate concerns about inaccurate data being used by public reporting websites.
One of the biggest concerns with sites that publicly report on physician- and hospital-level quality is that they are based on incomplete, flawed, or incorrect data. This is a valid concern in light of previously noted problems with ProPublica’s surgeon scorecard. Health systems have granular access to their own health outcomes data across all payers but typically do not make this data available public in a systematic way. Health systems are well-equipped to report the overall performance and physician-level performance on quality measures directly to consumers. In the face of inaccurate publicly available information, health systems should directly report this information to consumers.
3. The Federal Trade Commission (FTC) should take a more active role in the enforcement of its existing authority through the FTC Act pertaining to misleading claims made by app developers.
With the 21st Century Cures Act removing the FDA’s regulatory authority over informational apps, the FTC is the sole national governmental body with the authority to address apps making deceptive or misleading medical claims. While the FTC has exercised this authority on rare occasions as described above, the lack of strong enforcement in the face of exponential growth in health-oriented apps may lead to problems with misinformation akin to “fake news,” which could have devastating health consequences.
4. Guideline-making bodies should include examples of apps or tools to engage consumers in the implementation of recommendations related to the tracking of health information.
Prior efforts focused on curating apps have not involved medical professional groups or patient groups in a meaningful way. Medical guidelines focused on managing conditions such as hypertension, diabetes mellitus, and depression rely on repeated measurements of disease markers over time (e.g. blood pressure, glucose, and depression symptom assessments), most of which are collected by patients directly. Since guideline-making bodies have a large influence over how diseases are generally treated based on available evidence, they are also well-positioned to influence more specifically how the guidelines are implemented. When a guideline relates to the tracking of health information that could be done by a consumer directly, guideline-making bodies should strongly consider giving specific examples of apps that could be used by consumers to perform the desired action. This should involve input from relevant medical professional groups and patient advocacy groups.
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