in search of a digital health compasspatient empowerment

01-05-2023

Catherine Chronaki, Rita Mendes, Anne Moen

In search of a

Digital Health CompassPatient Empowerment

tweet #digitalhealthcompass

Agenda - tweet #digitalhealthcompass

• Empower people - digital health compass– Digital Health Literacy to make confident decisions– Health Data Standards to use own data– Emerging solutions and policy directions

• Q&A – interaction with you all

Tell me and I forget, Show me and I may remember, Involve me and I’ll understand


Objectives

• How can eHealth investments pay-off? – ePower: Citizens – patients, caregivers and providers

come together with standards, industry and researchers to co-create a digital health compass

• Call for joint actions by citizens, health care, informatics, policy, standards, and industry – Digital Health Literacy in the service for health for ALL


Digital health: Gutenberg moment for healthcare

Undiagnosed disease network Patient Centered Outcomes Research Institute (PCORI)

non-profit, non-government organization

Patient powered research networks

Patients share, load to apps, donate their genomic data

• .


The terrain is shifting• Sick care to Health• Provider focus to patient focus• Proprietary to shared• Competition to collaborative• Licensed to free• Site specific to mobile• National to global

Examples of storing and organizing health information artifacts and 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.

Digital

literacy, eSkills

Co-creation tomorrow’s care

Health & Digital Health

Literacy

Personal characteristics

health & wellness

Health care experiences &expectations


Digital Health Literacy

• Capacity to identify and appraise health information from multiple sources

• Make it into trusted, actionable knowledge • Relevant for me over time – my life trajectory

Achievements travels at the speed of trust


- Use myData for knowledge and give me tools to participate in digital transforming society

- Patient & families, health professionals and health informatics join forces with research and policy to advance digital health literacy

- Health Data standards and API as catalysts

Vision – a digital health compass


ExpertEmpower

Equity Evaluate

EvolveEducate

Engage

Enable

Searching for my digital health compass


Digital Health: One size does not fit all !

Beyond socio-demographic aspects that challenge adoption of digital health technology, there is also behavior and segmentation• Self Achievers• Priority Jugglers• Direction Takers• Balance Seekers• Willful Endures

Learn from marketing


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 2015

Health Confidence The Health Confidence Score (HCS) is a short generic measure of person’s confidence to engage fully in their health and care.• Knowledge• Self-management• Access to information • Engage in decision-making


• Knowledge and expertise to us as citizens – Resources that make sense – the relevant data – Engage – convenient – balance – targets

• Balance what really matters – Human relationships – empathy – the people – Complex knowledge based collaboration – Self care, choices and life trajectory

Moving forward


My Data – My Decision – Our ePower

Foster patient engagement, myHealthData, tailored, adaptive and actionable health experience for individuals, families and communities.


My Data …

Know the effects of medication you take or not...

ePatients• Empowered• Educated • Engaged• Enabled

• information integration can help patients and care givers to improve treatment effectiveness, quality of life

• Integration with scales, glucose meters, blood pressure... All in one patient’s 360 view.

• Standards like HL7 FHIR can be the catalyst in this live integration enabling participatory medicine.


My Decision ..

Enhanced tailored medication information for you!Imagine yourself in a pharmacy for over the counter medicine:Walk down the corridorYour medication app suggestions are based on your health and wellness data scanning the box.Response to questions:

– is it the right medication?– Characteristics are highlighted

for the patient (e.g. Considering allergies, preconditions, etc).

– Comparison among medication poducts

ID........................

Prescribing

App

Patient App

European Medicines Database

Treatmentdata

Productdata

PersonalProduct

data


Our ePower…

Health eHeart Alliance• Patient-Powered Research

Network for preventing and managing cardiovascular disease

• patient-led Steering Committee – patient engagement in the design,

conduct and oversight of results dissemination for cardiovascular-focused research.

• Supported by – Health eHeart Study, platform for

data collection, study management – coalition of heart-related advocacy

groups including the American Heart Association, Mended Hearts, StopAfib.org, and Sudden Arrhythmia Death Syndromes Foundation.

Source: http://health-eheartalliance.org/

“Pioneer new ways to empower patients in improving research, care and quality of life for heart patients.”


Maybe we should just

… Liberate the data


eHealth Standard APIs support Just-in-time interoperability!

• Complex simple• Costly free• Specialized generic• Comprehensive simple and tools-driven


HL7 Fast Healthcare Interoperability Resources (FHIR)

• Fast Healthcare Interoperability Resources (FHIR, pronounced "Fire") defines a set of "Resources" that represent granular clinical concepts.

• The resources can be managed in isolation, or aggregated into complex documents. Where possible, open internet standards are used for data representation.

• FHIR resources are based on simple XML or JSON structures, with an http-based RESTful protocol where each resource has predictable URL.

http://wiki.hl7.org/index.php?title=FHIRwww.fhir.orghttp://www.fhir.org simplifier

http://wiki.hl7.org/index.php?title=Resource

http://wiki.hl7.org/index.php?title=FHIR

http://www.fhir.org/


What is FHIR? • Based on a set of modular components - “Resources”

– Resources refer to each other using URLs– Small discrete units of exchange with defined behaviour and meaning– Have known identity and behaviour– Extensions permit adding data not part of core

• Resources are combined into “Profiles” to solve clinical and administrative problems in a practical way.

– Parties exchanging data define the specific way they want to use resources and their relations using Profiles.

– Profiles are the framework for defining services.

• Exchange resources between systems– Using a RESTful API (e.g. web approach)– As a Bundle of resources (messages, documents)

• Positives– Service driven– Modify components with changing need– Portability of components by moving program code with the data


HL7 standardization projects in mobile Health

• mFHAST– Mobile Framework for Healthcare Adoption of Short-Message Technologies – transport, structure and content

• FHIRframe– Fast Healthcare Interoperability Resources for mobile devices open API

standard• Meds-on-FHIR:

– Patient Medication Administration IG using FHIR profile• MH2F

– Mobile Health Functional Framework Standard • Consumer Mobile Health Application Functional Framework

www.estandards-project.eu

Shaping a new standards culture for large scale eHealth deployment

• Think of a global eHealth ecosystem where:– people (digital natives and immigrants)

enjoy timely safe and informed health, anywhere around the globe

– interoperability assets fuel creativity, entrepreneurship, and innovation

• where eStandards:– nurture large-scale eHealth deployments to

strengthen Europe’s voice and impact locallyon its citizens and globally on the world

– enable co-creation in interoperability where trusted dialogs on health, costs, and plans meet great expectations.

New competences


Search for a digital health compass

1. From Health Literacy to eHealth Literacy: the main determinants

2. Health mobile solutions: one way to achieve all in their pockets

3. The importance of consumers profile in eHealth Literacy and mHealth strategies

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Emerging solutions and policy actions:

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Health 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; 2004

Health literacy concerns the capacities of people to meet the complex demands

of health in modern society. (Sorensen et al, 2015)

Age

Social Class

Educational background

Main determinants variables that influence health literacy levels

….

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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. 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.

Age

Social Class

Educational background

Main determinants variables that influence e- health literacy levels

eskills

motivation for seeking information using technologies

Health issues/diseases

engagement with electronic health resources

….



3. The importance of consumers profile in eHealth Literacy and mHealth strategies: an

opportunity to improve

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Agenda:

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The 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 anywhere

We have to promote:

Doctors AND PATIENTS knowledge based

PREVENTIVE MODEL

In a user friendly way

E/mhealth strategies

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e/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

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Why is important to consider eHealth Literacy

and mHealth consumers profile?

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3. The importance of consumers profile in eHealth Literacy and mHealth strategies: an

opportunity to improve

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Agenda:

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eHealth literacymHealth initiatives that help citizens make informed choices

eHealth literacy and hyper-personalization for eHealth consumers

seeking care, preserving their dignity and independence

eHealth literacy determinants

mHealth specific initiatives that help citizens to access and ahieve the right information at the right time

Hyper-personalization concept… efforts that uses personal data to point out information and knowledge, services and/or tool at the right time (Kvedar, 2015)

Privacy, Physical (IoT), Predictive, Proactive

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In the IoT era we see a plethora of tools, gadgets, and apps that promise to improve life, health, and independence. However, eHealth consumers frequently find it hard to oriented themselves in the unfolding digital reality dominated by fragmented information, data, and knowledge they don’t control. With hyper-personalization, careful selection and use of data provides for more personalized and targeted products, services, and content. For this workshop we are specifically focusing on challenges and opportunities of such hyper-personalization in view of varying eHealth literacy, lifestyle and health goals.

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Mary Ann

John

Rachels parents

Pregant

23 y

man

66 y

diabetes

caregivers

5 y

vaccination

smoker

woman

Mary Ann’s Profile apps and respective moocs to learn how

to use themHigh-degree

Examplenot exhaustive

Cancer in family

John’s profile apps and respective moocs to learn how

to use them

Children Development

Asthma

Rachel’s profile apps and

respective moocs to allow their

parents to treat her

My Health data

register

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eHealth literacy and mhealth solutions:

a Privacy, Physical (IoT), Predictive, Proactive path to improve health

Is that possible?

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