eHealth Consumers in the Age of Hyper-Personalization

eHealth Consumers in the age of hyper-personalization Plenary panel, STC 2016

eHealth Consumers in the age of hyper-personalizationPlenary panel, STC 2016Anne Moen, Catherine Chronaki Morten Bruun-Rasmussen, Petter Hurlen, Rita Mendes

Outline Anne MoenHealth care and Internet of things eHealth literacy and hyper-personalizationMorten Bruun-Rasmussen Multiple information types and sources quality labels Petter HurlenMedication information as example for challenges to personal engagement Rita MendesMeasures of eHealth literacy related to health literacy and eSkills Catherine ChronakiStandards for interoperability eHealth consumer participationDISCUSSION

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Introduction:Health care and Internet of Things - eHealth literacy and hyper-personalizationAnne Moen, RN, PhD, [email protected]

MotivationInternet of Things meets Healthcareplethora of tools, gadgets, and apps that promise to improve life, health, and independencequality & usefulness actionable knowledge ? growing challenges presented as an unfolding picture of fragmented information, exponentially more sources, and data citizens do not control increasingly complicated to be prosumer - personal effort to participate, engage and preserve integrity, dignity and independence

Citizens health information workSophisticated, time relevant, robust, and creative idiosyncratic tools and strategies to manage personal health or keep track of health informationUsing / acting upon personal health information stored in health care system offer novel opportunities and new tools for participation and engagementInternet of Things, mHealth tools and apps adds to well-grown body of tools to collect, but not comprehensively manage health related information

Examples of health information management@homeMoen A, Brennan PF. Health@Home: the work of Health Information Management in the Household (HIMH) - implications for Consumer Health Informatics (CHI) innovations. Journal of the American Medical Informatics Association, 2005;12:648-56.

Storing and organizing health information artifacts - spaces

Moen A, Brennan PF. Health@Home: the work of Health Information Management in the Household (HIMH) - implications for Consumer Health Informatics (CHI) innovations. Journal of the American Medical Informatics Association, 2005;12:648-56.

Same artifact, different locationMoen A, Brennan PF. Health@Home: the work of Health Information Management in the Household (HIMH) - implications for Consumer Health Informatics (CHI) innovations. Journal of the American Medical Informatics Association, 2005;12:648-56.

Concepts eHealth literacy Digital Health Literacy the ability to seek, find, understand, and appraise health information from electronic sources and apply the knowledge gained to addressing or solving a health problem (Norman & Skinner (2006))Hyper-personalization using personal data to point out / present information and knowledge, services and/or tool at the right time (Kvedar, (2015))

Norman, C. D., & Skinner, H. A. (2006). eHEALS: The eHealth Literacy Scale. Journal of Medical Internet Research, 8(4), e279Kvedar, J. C., (2015): The Internet of Healthy Things. Partners HealthCare Connected Health, Boston, USA

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What can be at stake ? PrivacyPhysical (IoT)PredictiveProactive DignityOpportunitiesSubjectivitySense makingEVERYDAY LIVING

Augmented from Coulorbox.com

Healthkit

Activitytracker

Healthy Diet

Todays panel direction Explore people engagement in their own health information mgt., eHealth literacy and hyper-personalization where Internet of Things adds to the exponentially growing body of health related data for self care, health and independenceExplore capacities as empowered eHealth consumers engage with available resources to augment desired health and wellbeing

eHealth Consumers at the Age of Hyper PersonalizationQuality labeling and certificationEFMI STC 2016. Paris.MEDIQMorten [email protected]

Quality labelDescription of the product

CertificationSelf assessmentThird partyConcepts15MEDIQ

The concepts for quality labelling and certification is well know from our daily life.

It is widely used when we buy foods:

In most countries the content of food must include description of the product which is a quality label.

Certification of the product, can be done by self assessment or by a third party. The selection of self assessment or third party can be a part of international or national laws.

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Business Model and CostsMEDIQ16

Low CostsThird PartyCertificationSelf assessment

Self assessment is connected with low cost.

If the market is well regulated and the suppliers have benefits of the declaration, self assessment is Self assessment is preferred.

However, third party certification is needed in many cases to ensure that national rules and agreements are followed.

An example of self assessment, which didnt worked well are the VW diesel scandal in 2015.16

Interoperability testingIHE Connectatons - conformanceHL7 Conformace TestingMedCom (Denmark)EC Antilope project -> QMSEC eStandards project QMS -> eEIFMedical informationHON codesDanish health portalIs a well-known discipline also within eHealth17MEDIQ

Quality labelling and certification is a well-known discipline also within eHealth.

The most know and well established in some countries are interoperability testing, to verify if a Ehealth system have implemented a specific standard correct.

IHE are running annual connectathons, HL7 are running conformance testing.In Denmark, MedCom (which are a national competence center for running the health care network) have done test and certification of all eHealth system for 20 years.In the EC funded Antilope project a Quality Management System for interoperability testing has been developedIn the EC funded eStandards project the Antilope Quality Management System will be extended and integrated in the European eHealth Interoperability Framework

Regarding quality labeling there are some examplesHON codes are used to establish trustworthy health and medical information on the internetThe trustworthy problem in Denmark have until now been solved by running a public health portal where no commercial parties.BUT consumers access to health information is not only via health portals (continues on the next slide)17

Petter Hurlen, MD MSc PhDAkershus University Hospital, [email protected]. What a beautiful world this will beWhat a glorious time to be free

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Kari a case report19DiagnosisCaregiverTreatmentOsteoporosisUniversity hosp.Osteoporosis med 1DVTLocal hospitalTrombolysis*Osteoporosis med 1Hip fractureAtrial fibrillationLocal hospitalSurgery*, strong painkillers* Warfarin, Osteoporosis med 1TrainingNursing home AStrong painkillers*Warfarin, Osteoporosis med 1OsteoporosisUniversity hosp.Osteoporosis med 1Osteoporosis med 2 inj. DementiaLocal hospital

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Kari a case report20DiagnosisCaregiverTreatmentOsteoporosisUniversity hosp.Osteoporosis med 1DVTLocal hospitalTrombolysis*Osteoporosis med 1Hip fractureAtrial fibrillationLocal hospitalSurgery*, strong painkillers* Warfarin, Osteoporosis med 1TrainingNursing home AStrong painkillers*Warfarin, Osteoporosis med 1OsteoporosisUniversity hosp.Osteoporosis med 1Osteoporosis med 2 inj. DementiaLocal hospital+ Osteoporosis med 1- Warfarin

Red: Wrong

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Kari a case report21DiagnosisCaregiverTreatmentOsteoporosisUniversity hosp.Osteoporosis med 1DVTLocal hospitalTrombolysis*Osteoporosis med 1Hip fractureAtrial fibrillationLocal hospitalSurgery*, strong painkillers* Warfarin, Osteoporosis med 1TrainingNursing home AStrong painkillers*Warfarin, Osteoporosis med 1OsteoporosisUniversity hosp.Osteoporosis med 1Osteoporosis med 2 inj. DementiaLocal hospitalWarfarin - Warfarin+ Osteoporosis med 1CareNursing home BStrong painkillers?Paracetamol, - Warfarin

Most decisions are based on dialogue and examination, not informationAverage # of decisions in consultation: 13Most decisions are not the establishment of a diagnosis.New paradigm; individualized medicine based on genome, not categories from signs, symptoms and examinations.21

International Geophysical Year 1957 - 195822

One patient one disease one treatment one doctor

International Geophysical Year 1957 - 195823

One patient one disease one treatment many doctors

Typical: Many health problems, many drugs, many actors, limited support23

What a glorious time to be - ill?24

The problem isnt that the patients dont understand the technology, but that the technology doesnt understand the patients

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Do not preach - listenDo not automate - rethinkDo not tell - ask and learnDo not promote - collaborate

Dialogue not monologues

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Petters plea

Too many solutions too few problemsDoctors: Treat all as SecretariesEngineers: Treat all as (Illiterate, stupid) users

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Inter-operabilityNot semantic doctors can read

Bring together to learn from each other

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eHealth Consumers at the age of hyper-personalization: - importance of eHealth literacy profile

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STARTING POINT: Healthcare model is changing from reactive to preventiveSPMS - Servios Partilhados do Ministrio da Sade, E.P.E. www.spms.pt26/04/201628

REACTIVEPREVENTIVEDoctors knowledge basedDoctors AND PATIENTS knowledge basedInformation needed

SPMS - Servios Partilhados do Ministrio da Sade, E.P.E. www.spms.pt26/04/201629Health Literacythe degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions. Institute of Medicine. Health Literacy: A Prescription to End Confusion. Washington, DC: The National Academies Press; 2004Health literacy concerns the capacities of people to meet the complex demands of health in modern society. (Sorensen et al, 2015)

AgeSocial ClassEducational backgroundMain determinants variables that influence health literacy levels.

SPMS - Servios Partilhados do Ministrio da Sade, E.P.E. www.spms.pt26/04/201630eHealth Literacy

The ability to seek, find, understand, and appraise health information from electronic sources and apply the knowledge gained to addressing or solving a health problem. Eng TR. The e-Health Landscape: A Terrain Map of Emerging Information and Communication Technologies in Health and Health Care. Princeton, NJ: The Robert Wood Johnson Foundation; 2001.AgeSocial ClassEducational backgroundMain determinants variables that influence e- health literacy levelseskillsmotivation for seeking information using technologiesHealth issues/diseasesengagement with electronic health resources.

SPMS - Servios Partilhados do Ministrio da Sade, E.P.E. www.spms.pt26/04/201631The right Information (quality, trustable)At the right time(allow to act when is needed to) To the right people(regarding needs and skills to understand)With access anywhereWe have to promote:

Doctors AND PATIENTS knowledge basedPREVENTIVE MODELIn a user friendly wayE/mhealth strategies

Why do we need mHealth tools and apps to improve eHealth Literacy?

SPMS - Servios Partilhados do Ministrio da Sade, E.P.E. www.spms.pt26/04/201632e/mHealth strategy to tear down barriers to provide better online access to digital goods and health services.Create an environment where digital networks and services take full advantage of digitalisation, improve healthcare for the benefit of patients, give patients more control of their care, ensure sustainable health systems and unlock innovation in health markets

SPMS - Servios Partilhados do Ministrio da Sade, E.P.E. www.spms.pt26/04/201633Why is important to consider eHealth Literacy and mHealth consumers profile?

SPMS - Servios Partilhados do Ministrio da Sade, E.P.E. www.spms.pt26/04/201634AreasImIpacts eHealth literacy determinantsApps (mobile devices) dont interact among themInteroperability problem Several apps independent from the users profile Unreliable information about health apps use Using the e-literacy profile to provide the citizens a personalized eHealth apps plans (right information to use in the right time in all the places) to empower individuals to participate in health decisions in a informed wayAS IS: scattered mhealth apps informationTO BE: mhealth apps based on a profileSeveral health appsSoluoMain Problem: proliferation of mHealth tools and apps

AgeSocial ClassEducational background,eskillsmotivation for seeking information using technologiesHealth issuesengagement with electronic health resourcesDisparity of health and wellbeing informationMobile Apps unable to contribute to an EHR

SPMS - Servios Partilhados do Ministrio da Sade, E.P.E. www.spms.pt26/04/201635European Commission Directorate General for Communications Networks, Content and Technology (DG CONNECT) support with our mHealth initiatives.Helping citizens make informed choice

eHealth literacy and hyper-personalization for eHealth consumers seeking care, preserving their dignity and independenceSolution

26/04/201636SPMS - Servios Partilhados do Ministrio da Sade, E.P.E. www.spms.ptMary AnnJohn Rachels parentsPregant23 yman66 ydiabetescaregivers5 yvaccinationsmokerwomanMary Anns Profile apps and respective moocs to learn how to use themHigh-degreeExamplenot exhaustiveCancer in familyJohns profile apps and respective moocs to learn how to use themChildren Development AsthmaRachels profile apps and respective MOOCs to allow their parents to treat herMy Health data register

eHealth Consumers at the age of Hyper-personalization eHealth Literacy in the Internet of Things

Catherine CHRONAKIHL7 [email protected]

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Have you got a digital health compassyou trust?eHealth Consumers at the age of Hyper-personalization - [email protected]

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Hugo Campos: empowered professional and patient with an implanted defibillatorA native of Rio de Janeiro, Hugo Campos moved to the United States in the 1990s to study graphic arts.Hugo Camposat risk of cardiac arrest, became implanted with a cardiac defibrillator This made Campos realize how crucial it is for patients to engage in their own health care and in shared decision-making with clinicians.In the months that followed, Campos started a blog, founded the ICD User Group and embraced a new world of patient advocacy through social media. Campos is passionate about participatory medicine, connected health and patient empowerment through the use of technology. He also advocates for the rights of patients with pacemakers and implantable defibrillators to gain electronic access to the data collected by their cardiac devices.

eHealth Consumers at the age of Hyper-personalization - [email protected]

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Campos TEDx Cambridge 2012xMonitoring our lifestyle

We all have the right to our health information!ePatientsEmpoweredEquippedEngagedEnabledeHealth Consumers at the age of Hyper-personalization - [email protected]

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Digital Health:One size doesnt fit allThere is an app for You!Beyond the sociodemographic aspects, personality also challenges adoption of digital health technology:Self AchieversPriority JugglersDirection TakersBalance SeekersWillful EndurerseHealth Consumers at the age of Hyper-personalization - [email protected]

#Ref: Benson T, Bowman C, Potts HWW. Health Confidence Score (HCS): development and validation of a short generic questionnaire for person centred care. Submitted for publication 2015Measuring up Health ConfidenceThe Health Confidence Score (HCS) is a short generic measure of persons confidence to engage fully in their health and care.KnowledgeSelf-managementAccessShared decision-makingeHealth Consumers at the age of Hyper-personalization - [email protected]

#Maybe we should justLiberate the dataeHealth Consumers at the age of Hyper-personalization - [email protected]

#Getting enhanced tailored medication information you care about!Scanning the medication barcode, enhanced information appears: Right medication ? Highlight medication characteristics patient specifics Allergies? Preconditions? Interactions

ID........................PrescribingAppPatient AppEuropean Medicines Database

TreatmentdataProductdataPersonalProductdata

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In Chronic DiseaseUnderstanding the effects of medication intakeFor diabetes care, information integration can help patients and care givers to improve treatment effectiveness, quality of lifeIntegration with scales, glucose meters, blood pressure... All in one patients 360 view.Standards like HL7 FHIR can play a dominant role for this live integration

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eHealth Standard APIs support Just-in-time interoperability!Complex simpleCostly freeSpecialized genericComprehensive simple and tools-driven


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Emerging HL7 mHealth Standards mFHASTMobile Framework for Healthcare Adoption of Short-Message Technologies transport, structure and content MH2FMobile Health Functional Framework Standard Consumer Mobile Health Application Functional Framework FHIRframeFast Healthcare Interoperability Resources for mobile devices open API standard Meds-on-FHIR: Patient Medication Administration IG using FHIR profileeHealth Consumers at the age of Hyper-personalization - [email protected]

#EU WG guidelines to assess data validity & reliability of mHealth apps: Issues at stakeData protection, including security of health dataBig dataState of play on the applicable EU legal frameworkPatient safety and transparency of informationmHealth role in healthcare systems and equal accessInteroperabilityReimbursement modelsLiabilityResearch and innovation in mHealthInternational cooperationAccess of entrepreneurs to mHealth market


Green Paper on Mobile Health

mHealth

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Think of a global eHealth ecosystem where people (digital natives and immigrants) enjoy timely safe and informed health, and interoperability assets fuel creativity, entrepreneurship, and innovation, where eStandards nurture large-scale eHealth deployments to strengthen Europes voice and impact locally on its citizens and globally on the world and enable co-creation in interoperability where trusted dialogs on health, costs, and plans meet great expectations.Shaping a culture of HIGH eStandardsin large scale eHealth deployment

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Digital health providers and their patients (UK) Ref: How digital technology is transforming health and social care, Deloitte Center for Healthcare, 2015


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Digital Health InnovationDigital Health literacyeSkillsHealth LiteracyeHealth Consumers at the age of Hyper-personalization - [email protected]

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QUESTIONS

What is eHealth literacy, and can the capacity of consumers to productively use mHealth tools be measured and potentially improved? Can access to myHealthData personalize the eHealth consumers activities?What strategies for hyper-personalization of health information and tools can effectively support the eHealth consumers to reach their health goals?What are the research questions that EFMI could address in future workshops at the European and international arenas?

THANK YOU !

eHealth Consumers in the Age of Hyper-Personalization

Health & Medicine

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