Basch, Ethan M.

Chung, Arlene E.

Jensen, Roxanne E.

English

PubMed

Carolina Digital Repository

Lineberger Comprehensive Cancer Center,University of North Carolina at Chapel Hill;Carolina Health Informatics Program,Chapel Hill, NC; Lombardi ComprehensiveCancer Center; and GeorgetownUniversity,Washington, DCDOI: 10.1200/JOP.2016.015784;published online ahead of print atjop.ascopubs.org on September 13,2016.Leveraging Emerging Technologiesand the “Internet of Things” toImprove the Quality of Cancer CareArlene E. Chung, MD, MHA, MMCi, Roxanne E. Jensen, PhD, andEthan M. Basch, MD, MScKevin Ashton coined the term “Internet ofThings” in 2009 in the setting of supplychain management,1 but since that time,the Internet of Things (IoT) has had animpact on many other markets. Over thepast several years, advances in computingand sensing have sparked the emergenceof the IoT for health care. The IoT refersto a connection of smart objects such asappliances, sensors, controllers, wearables,andmedical devices to the Internet. Overall,the IoT health care market is predicted togrow from 32.4 billion in 2015 to 163 billionby the year 2020.2 In 2015, there were al-ready 25 billion Internet-connected devices,which is double the number of humans onEarth.3 In addition, the number of IoTdevices will have unprecedented growthand is expected to increase to more than 50billion by 2020.3 Within the IoT, wearabledevices and sensors alonewill grow tomorethan 118 million devices predicted to besold by 2018.4As health care moves away from tra-ditional encounter- and office-based careparadigmstomorecontinuous interactionsbetween the patient and the health caresystem, there is an unparalleled opportunityto leverage emerging technologies to createan ecosystem with the patient at thecenter. It is now possible to track varioustypes of data in the patient’s own envi-ronment. Examples include accelerom-eter data (physical activity and intensity),temperature, heart rate and heart ratevariability, blood pressure, sleep, caloricintake/expenditure, brain wave activity,pulse oximetry, glucose, and other biometricdata. Wristbands and smartwatches cur-rently predominate the fitness wearablesmarket,5 but there will be a shift towardsmart garments by 2020.6 There are alsoseveral ingestible and implantable sensorsfor tracking biometric data that alreadyhave or are currently undergoingUS FoodandDrugAdministration approval. Beyondwearables, sensors can now be attachedto appliances, objects, and the environ-ment to detect carbon dioxide and carbonmonoxide, particulate matter, ambientroom temperature, light, and allergenssuch as pollen.Information technology was cited as akey requirement forbuildingahigh-qualitycancer care delivery system by the Instituteof Medicine and also as the foundation fora learning health care system.7 This visionfor digitally capturing the health care ex-perience for “real-time generation andapplication of knowledge for care im-provement” has made substantial prog-ress since that report in 2009. One exemplaris CancerLinQ,8 which is an initiative ofthe American Society of Clinical Oncol-ogy for aggregating and analyzing datafrom electronic health records, clinicaltrials, and clinical practice guidelines.Recently, CancerLinQ and the Cancer In-formatics for Cancer Centers announceda collaboration to apply big data method-ologies to drive discovery in cancer care.Understanding health care delivery throughCopyright © 2016 by American Society of Clinical Oncology Volume 12 / Issue 10 / October 2016 n jop.ascopubs.org 863Special Series: Quality Care Symposium PRESENTATION SUMMARYreal-time, large-scale monitoring and evaluation is an im-portant step toward actualizing a true learning health careinformation technology system that targets the specific issuesunique to cancer care.Until recently, electronic health records have not in-corporated patient-generated health data (PGHD) in cancercare. PGHD includes patient-reported outcomes, medical/wearable device data, and other sensor-generated data fromwithin the patient’s home environment. Because patientsspend most of their lives outside the walls of the clinic andhospital, IoT technologies that generate PGHD provide anunparalleled opportunity to obtain a more holistic longitu-dinal view of the health of a patient with cancer. For example,one could envision that a patient with cancer who also hasheart failure could have a smart home environment which hassensor-enabled doors, floors, refrigerator/freezer, pillboxes,toothbrushes, bed, andmirrors coupledwith wearable sensorsfor continuous or intermittent monitoring of heart rate, elec-trocardiogram, pulse oximetry, respiratory rate, body temper-ature, galvanic skin response, hydration, weight, and gait (Fig 1).The patient’s context within the IoT ecosystem could be furtherenhanced with data streams from social media, consumer data(purchases), and geographic information systems and fromscanning the environment for audioand/orvoicedata.Advancedcomputational and mathematical analytic approaches couldprocess and aggregate these data into actionable informationto shape self-management or clinical decisions. In this IoTecosystem, an oncologist could be notified if a patient has notbeen out of bed or out of their room or if their pillbox has notbeen opened for several days. These signals from within theIoT data would provide an opportunity for the oncologist tocheck in with the patient and have the patient answer anelectronic patient-reported outcome questionnaire via thepatient portal. The oncologist could also send a textmessage tothe patient or caregiver to determine whether the patient ishaving intractable pain or their physical function has declinedsuch that they are unable to get out of bed to reach the pillboxand have therefore missed doses of their oral chemotherapymedication.It is also conceivable that, in the near future, most of thedata to inform clinical care will be collected outside clinicalsettings and will potentially provide richer details about thepatient. For frail and elderly patients with cancer, remotemonitoringusingPGHDand the IoTcould help keeppatientsout of the hospital so they can instead remain in their homesand still have any adverse symptomatic events or acuteexacerbations managed effectively. With the IoT, providerscould identify variance or deviations from baseline measuresand alert the patient or caregiver to check in or to seekemergency care.Integrating the IoT to improve the quality of cancer carefaces several challenges, including security and privacy, datastandards and interoperability, data provenance and owner-ship, and workflow integration into clinical care. As the num-ber of Internet-connected devices and objects increases, thenumber of potential entry points for cyberattacks increases.Streaming sensitive health data from IoT devices presents anattractive target for data thieves. Ensuring the security andprivacy of these data will be paramount. In an extreme case, amedical device or sensor could be hacked in real time, whichcould have potentially fatal consequences. In another case,data from a device could be stolen, thus potentially revealingsensitive health information.There are a number of challenges regarding data standardsand interoperability. The accuracy of data from consumerdevices isvariable,andsomedevicesperformbetter thanothersfor physical activity and heart rate.9,10 In the case of physicalactivity data, the raw accelerometer data generally are pro-cessed by proprietary algorithms that can vary by device andare often updatedwithout notice to the user. Standardizing theoutputs of these data across devices and performing validationstudies in various patient populations will improve the use ofthese data across patient populations. There are also nu-merous standards and ontologies, which make mapping datafrom different data streams extremely difficult. Moreover,there will likely be numerous types of devices and sensorswithin the IoT health ecosystem that need to exchange andinterpret data sharedwith each other andwith electronic healthrecord systems. Thus, interoperability on a foundational,structural, and semantic level will be paramount.Data provenance and ownership is another broad concernidentified by patients, providers, health care systems, andpolicymakers. The ability todemarcate patient-generateddatafrom data generated during clinical encounters is key forbringing these types of data into the health care setting ina way that physicians can differentiate them.11 In terms ofdata ownership, there is much debate about whether PGHDis owned by the patient or by the health care system ifthe data are synchronized to the electronic health recordsystem or patient portal. Ultimately, data ownership issueshave important downstream effects. If patients own theirdata, they have an opportunity to contribute the data for864 Volume 12 / Issue 10 / October 2016 n Journal of Oncology Practice Copyright © 2016 by American Society of Clinical OncologyChung, Jensen, and Baschresearch purposes. Citizen science is making progress throughorganizations such as PatientsLikeMe and the Patient-Centered Outcomes Research Institute, which serve as theinfrastructure for contributing PGHD to research on a largerscale. If patients do not retain ownership of their data, scalingcitizen science efforts will be difficult. Currently, little isknown about the patient experience in populations notcaptured within cancer trials. Thus, the IoT could provide anopportunity to better understand these populations, theiroutcomes, and the influence of contextual factors on theirhealth and could move beyond the information currentlystreamed from consumer fitness wearables.Integration of IoT andPGHD into clinical care processes ischallenging because the evidence base is evolving. First, it isCar SensorsDriving Quality & SafetyDriving ImpairmentAir Pollutants/Particulate MatterEnvironmental TemperatureBiometric Sticker SensorsHeart RateRespiratory RatePulse OximetryElectrocardiogramBody TemperatureGalvanic Skin ResponseHydrationMuscle Activity (EMG)Brain Wave Activity (EEG)Bed SensorSleep Quality/DurationTimes Out of Bed/AwakenedSleep PatternsEnvironmental SensorsCarbon Dioxide/Carbon MonoxideRoom TemperatureParticulate Matter (pollutants/pollen)Door SensorsOpened? Closed?Timing of Open/CloseFitness TrackerPhysical ActivitySleepHeart RateGalvanic Skin ResponseSmart ShoesGait SpeedBalanceFallsWeightPulse OximetryHeart RatePillbox SensorMedication AdherenceTiming of Medication AdministrationAction or Follow-UpPatient PortalEHRFilter Data(algorithms/artificial intelligence/machine learning)Clinical ReviewAlertsSmart WalkerStepsGait StabilityBody TemperatureHeart RatePulse OximetryRefrigerator SensorOpened? Closed?Timing of Open/CloseSmart HomeFIG 1. Conceptual model of an “Internet of Things” ecosystem for health. EEG, electroencephalogram; EHR, electronic health record; EMG, electromyogram.Copyright © 2016 by American Society of Clinical Oncology Volume 12 / Issue 10 / October 2016 n jop.ascopubs.org 865Presentation Summaryunclear which types of patients with cancer would benefit mostfrom being monitored by using IoT technologies, which typesofdatawill benecessary toaccuratelycapture thequalityof careand improve patient outcomes, and how frequently datashould be sampled (continuously v intermittently). Second,while a recent national survey showed that patients are quitewilling to exchange information about vital signs andsymptoms over a mobile phone or tablet,12 little is knownabout whether patients would be willing to be continuouslymonitored with IoT technologies that might be perceivedas being more obtrusive. Third, providers who are alreadyinundated with data are wary about the impact of additionaldata on their workflows and workload.11 Finally, there islittle guidance regarding how frequently these data shouldbe brought into electronic health record systems as part ofthe medical record and how they should be presented toproviders to facilitate clinical decision making. In someinstances, bringing in continuous streams of IoT data withoutappropriate alerts and notifications to inform providers aboutabnormalities in real time could present safety issues. Forexample, a patient with breast cancer who is receivinganthracycline, which is potentially cardiotoxic, could develop alife-threatening arrhythmia that could be detected by using acontinuous heart rate sensor. If her data were not monitored inreal time with an alert generated to notify the physician on call,missing that event could have serious consequences.As the IoTecosystemexpandsover thenext fewyears, therewill be new opportunities to quantify, evaluate, and monitor apatient’s biometrics, home, and environment. This will provideresearchers and oncologists with an exceptional opportunity tobetter understand how a patient’s unique ecosystem contrib-utes to their overall health and long-term outcomes during andafter cancer treatment. Although there are known environ-mental exposures that contribute to cancer risk, IoT data maybe able to enhance our understanding of the microenviron-ment’s contribution to an individual’s cancer risk. Overall,these insights will allow for greater precision and tailoring ofclinical recommendations and treatment options and ulti-mately improve the patient’s experience longitudinally.AcknowledgmentThe production of this manuscript was funded by the Conquer CancerFoundation Mission Endowment. Supported by Grant No. KL2TR001109 fromthe National Institutes of Health (NIH) National Center for AdvancingTranslational Sciences (A.E.C.), by Grant No. KL2TR000102 from the NIHNational Center for Research Resources and the National Center for AdvancingTranslational Sciences through the Clinical and Translational Science AwardsProgram (R.E.J.), and by Grant No. P30 CA051008 from the LombardiComprehensive Cancer Center (R.E.J.). This article does not represent the policyor opinions of either the Patient-Centered Outcomes Research Institute or NIH.Authors’ Disclosures of Potential Conflicts of InterestDisclosures provided by the authors are available with this article atjop.ascopubs.org.Author ContributionsConception and design: Arlene E. ChungManuscript writing: All authorsFinal approval of manuscript: All authorsAccountable for all aspects of the work: All authorsCorresponding author: Arlene E. Chung, MD, University of North Carolina atChapelHill School ofMedicine,5034OldClinicBuilding,CB7110,ChapelHill,NC 27599-7110; e-mail: arlene_chung@med.unc.edu.References1. Ashton K: That ‘Internet of Things’ Thing. RFID Journal, 2009. http://www.rfidjournal.com/articles/view?49862. MarketsandMarkets: IoT Healthcare Market by Components (Medical Device,System and Software, Service, and Connectivity Technology), Application (Tele-medicine, Workflow Management, Connected Imaging, Medication Management),End-User-Global Forecast to 2020. October 2015, Report Code TC 3847. http://www.marketsandmarkets.com/Market-Reports/iot-healthcare-market-160082804.html3. Statista: Internet of Things (IoT): Number of connected devices worldwide from2012 to 2020 (in billions). http://www.statista.com/statistics/471264/iot-number-of-connected-devices-worldwide/4. CCS Insights:Market Forecast:Wearables. July 2014. http://www.ccsinsight.com/our-services/1711-market-forecast-wearables5. Juniper Research: Smart Wearable Devices: Fitness, Glasses, Watches, Multi-media, Clothing, Jewellery, Healthcare & Enterprise 2014-20196. McIntyre A, Blau B, Reitz M: Forecast: Wearable Electronic Devices, Worldwide,2016. Gartner, January 19, 2016. https://www.gartner.com/doc/3187421/forecast-wearable-electronic-devices-worldwide7. Levit L, Balogh E, Nass S, et al (eds): Delivering High-Quality Cancer Care:Charting a New Course for a System in Crisis. Washington, DC, National AcademiesPress, 20138. American Society of Clinical Oncologists: CancerLinQ. 2016. https://cancerlinq.org9. Wallen MP, Gomersall SR, Keating SE, et al: Accuracy of heart rate watches:Implications for weight management. PLoS One 11:e0154420, 201610. Evenson KR, Goto MM, Furberg RD: Systematic review of the validity andreliability of consumer-wearable activity trackers. Int J Behav Nutr Phys Act 12:159,201511. Wald JS, Haque S, Treiman K, et al: Evaluation of Stage 3 Proposed MeaningfulUse Objectives: North Carolina and Tennessee. Rockville, MD, Agency forHealthcare Research and Quality (AHRQ), AHRQ Publication No. 15-0022-EF,February 201512. Serrano KJ, YuM, RileyWT, et al: Willingness to exchange health information viamobile devices: Findings from a population-based survey. Ann Fam Med 14:34-40,2016866 Volume 12 / Issue 10 / October 2016 n Journal of Oncology Practice Copyright © 2016 by American Society of Clinical OncologyChung, Jensen, and BaschAUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTERESTLeveraging Emerging Technologies and the “Internet of Things” to Improve the Quality of Cancer CareThe following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships areself-held unless noted. I 5 Immediate Family Member, Inst 5 My Institution. Relationships may not relate to the subject matter of this manuscript. Formore information about ASCO’s conflict of interest policy, please refer to www.asco.org/rwc or jop.ascopubs.org/site/misc/ifc.xhtml.Arlene E. ChungNo relationship to discloseRoxanne E. JensenNo relationship to discloseEthan M. BaschNo relationship to discloseCopyright © 2016 by American Society of Clinical Oncology Volume 12 / Issue 10 / October 2016 n jop.ascopubs.orgPresentation Summary

Leveraging Emerging Technologies and the “Internet of Things” to Improve the Quality of Cancer Care

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Leveraging Emerging Technologies and the “Internet of Things” to Improve the Quality of Cancer Care

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