Where the Internet of Things meets healthcare we see a plethora of tools, gadgets, and apps that promise to improve life, health, and independence. As patients, family members ofr friends, we are subsumed under the term "eHealth consumers”. For us it is increasingly hard to navigate in the unfolding digital reality dominated by new gadgets, and fragmented information, data, and knowledge we don’t control. More personalized and targeted products, services, and content could alleviate this. In this slide deck we are specifically focusing on challenges and opportunities for personalization in view of varying eHealth literacy, lifestyle and health goals.

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

3. Outline
Anne Moen
Health care and Internet of things – eHealth literacy and hyper-personalization
Morten Bruun-Rasmussen
Multiple information types and sources – quality labels
Petter Hurlen
Medication information as example for challenges to personal engagement
Rita Mendes
Measures of eHealth literacy related to health literacy and eSkills
Catherine Chronaki
Standards for interoperability – eHealth consumer participation
DISCUSSION

4. Introduction:
Health care and Internet of Things
- eHealth literacy and hyper-personalization
Anne Moen, RN, PhD, FACMI
anne.moen@medisin.uio.no

5. Motivation
Internet of Things meets Healthcare
– plethora of tools, gadgets, and apps that promise
to improve life, health, and independence
– quality & 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

6. Citizens’ health information work
• Sophisticated, time relevant, robust, and creative
idiosyncratic tools and strategies to manage
personal health or keep track of health information
• Using / acting upon personal health information
stored in health care system offer novel opportunities
and new tools for participation and engagement
• Internet of Things, mHealth tools and apps adds to
well-grown body of tools to collect, but not
comprehensively manage health related information

7. Examples of health information
management@home
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.

8. 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.

9. Same artifact, different location
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.

10. 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))

11. What can be at stake ?
• Privacy
• Physical (IoT)
• Predictive
• Proactive
• Dignity
• Opportunities
• Subjectivity
• Sense making
EVERYDAY LIVING

12. Augmented from Coulorbox.com
Health
kit
Activity
tracker
Healthy Diet

13. Today’s 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 independence
• Explore capacities as empowered eHealth
consumers engage with available resources to
augment desired health and wellbeing

14. eHealth Consumers
at the Age of Hyper Personalization
Quality labeling and certification
EFMI STC 2016. Paris. MEDIQ
Morten Bruun-Rasmussen
mbr@mediq.dk

15.  Quality label
 Description of the
product
 Certification
 Self assessment
 Third party
Concepts
15 MEDIQ

16. Business Model and Costs
MEDIQ16
Low Costs
Third Party
Certification
Self assessment

17.  Interoperability testing
 IHE Connectaton’s - conformance
 HL7 Conformace Testing
 MedCom (Denmark)
 EC Antilope project -> QMS
 EC eStandards project QMS -> eEIF
 Medical information
 HON codes
 Danish health portal
Is a well-known discipline
– also within eHealth
17 MEDIQ

18. Petter Hurlen, MD MSc PhD
Akershus University Hospital, Norway
petter@hurlen.no
I.G.Y.
”What a beautiful world this will be
What a glorious time to be free”

19. Kari – a case report
19
Diagnosis Caregiver Treatment
Osteoporosis University hosp. Osteoporosis med 1
DVT Local hospital Trombolysis*
Osteoporosis med 1
Hip fracture
Atrial fibrillation
Local hospital Surgery*, strong painkillers*
Warfarin, Osteoporosis med 1
Training Nursing home A Strong painkillers*
Warfarin, Osteoporosis med 1
Osteoporosis University hosp. Osteoporosis med 1
Osteoporosis med 2 inj.
Dementia Local hospital

20. Kari – a case report
20
Diagnosis Caregiver Treatment
Osteoporosis University hosp. Osteoporosis med 1
DVT Local hospital Trombolysis*
Osteoporosis med 1
Hip fracture
Atrial fibrillation
Local hospital Surgery*, strong painkillers*
Warfarin, Osteoporosis med 1
Training Nursing home A Strong painkillers*
Warfarin, Osteoporosis med 1
Osteoporosis University hosp. Osteoporosis med 1
Osteoporosis med 2 inj.
Dementia Local hospital + Osteoporosis med 1
- Warfarin

21. Kari – a case report
21
Diagnosis Caregiver Treatment
Osteoporosis University hosp. Osteoporosis med 1
DVT Local hospital Trombolysis*
Osteoporosis med 1
Hip fracture
Atrial fibrillation
Local hospital Surgery*, strong painkillers*
Warfarin, Osteoporosis med 1
Training Nursing home A Strong painkillers*
Warfarin, Osteoporosis med 1
Osteoporosis University hosp. Osteoporosis med 1
Osteoporosis med 2 inj.
Dementia Local hospital Warfarin - Warfarin
+ Osteoporosis med 1
Care Nursing home B Strong painkillers?
Paracetamol,
- Warfarin

22. International Geophysical Year
1957 - 1958
22
One patient – one disease – one treatment – one doctor

23. International Geophysical Year
1957 - 1958
23
One patient – one disease – one treatment – many doctors

24. What a glorious time to be - ill?
24

25. Do not preach - listen
Do not automate - rethink
Do not tell - ask and learn
Do not promote - collaborate
Dialogue – not monologues
25
Petter´s plea

26. 26

27. 26/04/2016
eHealth Consumers at the age of hyper-personalization:
- importance of eHealth literacy profile

28. STARTING POINT: Healthcare model is changing from reactive to preventive…
SPMS - Serviços Partilhados do Ministério da Saúde, E.P.E. www.spms.pt26/04/2016 28
REACTIVE PREVENTIVE
Doctors knowledge based
Doctors AND PATIENTS
knowledge based

29. SPMS - Serviços Partilhados do Ministério da Saúde, E.P.E. www.spms.pt26/04/2016 29
Health Literacy
the 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
….

30. SPMS - Serviços Partilhados do Ministério da Saúde, E.P.E. www.spms.pt26/04/2016 30
eHealth 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
….

31. SPMS - Serviços Partilhados do Ministério da Saúde, E.P.E. www.spms.pt26/04/2016 31
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
Why do we need mHealth tools and apps to improve eHealth Literacy?

32. SPMS - Serviços Partilhados do Ministério da Saúde, E.P.E. www.spms.pt26/04/2016 32
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

33. SPMS - Serviços Partilhados do Ministério da Saúde, E.P.E. www.spms.pt26/04/2016 33
Why is important to consider eHealth Literacy and mHealth consumers profile?

34. SPMS - Serviços Partilhados do Ministério da Saúde, E.P.E. www.spms.pt26/04/2016 34
AreasImIpacts
eHealth
literacy
determin
ants
Apps
(mobile
devices)
don’t
interact
among
them
Interoper
ability
problem
Several apps
independen
t from the
users profile
Unreliable
information
about health
app’s 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 way
AS IS: scattered mhealth apps information
TO BE: mhealth apps based on a profile
Several
health
apps
Solução
Main Problem: proliferation of mHealth tools and apps
Age
Social Class
Educational
background,
eskills
motivation for
seeking information
using technologies
Health issues
engagement with
electronic health
resources
Disparity of
health and
wellbeing
information
Mobile
Apps
unable to
contribute
to an EHR

35. SPMS - Serviços Partilhados do Ministério da Saúde, E.P.E. www.spms.pt26/04/2016 35
European 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
independence
Solution

36. 26/04/2016 36SPMS - Serviços Partilhados do Ministério da Saúde, E.P.E. www.spms.pt
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
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

37. Catherine CHRONAKI
HL7 Foundation
euoffice@HL7.org
eHealth Consumers at the age of Hyper-personalization
eHealth Literacy in the Internet of Things

38. 38
Have you got a digital health compass
you trust?
eHealth Consumers at the age of Hyper-personalization - euoffice@HL7.org

39. 39
Hugo Campos: empowered professional
and patient with an implanted defibillator
A native of Rio de Janeiro, Hugo Campos moved to the
United States in the 1990s to study graphic arts.
Hugo Campos at 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 - euoffice@HL7.org

40. 40
Campos TEDx Cambridge 2012x
Monitoring our lifestyle
We all have the right to our health information!
ePatients
• Empowered
• Equipped
• Engaged
• Enabled
eHealth Consumers at the age of Hyper-personalization - euoffice@HL7.org

41. 41
Digital Health:
One size doesn’t fit all
There is an app for You!
Beyond the sociodemographic
aspects, personality also
challenges adoption of digital
health technology:
Self Achievers
Priority Jugglers
Direction Takers
Balance Seekers
Willful Endurers
eHealth Consumers at the age of Hyper-personalization - euoffice@HL7.org

42. 42
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
Measuring up
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
• Shared decision-making
eHealth Consumers at the age of Hyper-personalization - euoffice@HL7.org

43. 43
Maybe we should just…Liberate the data
eHealth Consumers at the age of Hyper-personalization - euoffice@HL7.org

44. 44
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
...
...
...
...
...
...
...
...
Prescribing
App
Patient
App
European Medicines
Database
Treatment
data
Product
data
Personal
Product
data

45. 45
In Chronic Disease
Understanding the effects of
medication intake
For diabetes care,
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 play a dominant role for
this live integration

46. 46
eHealth Standard APIs support
Just-in-time interoperability!
Complex  simple
Costly  free
Specialized  generic
Comprehensive  simple and tools-driven
eHealth Consumers at the age of Hyper-personalization - euoffice@HL7.org

47. 47
Emerging HL7 mHealth Standards
mFHAST
Mobile Framework for Healthcare Adoption of Short-Message
Technologies
transport, structure and content
MH2F
Mobile Health Functional Framework Standard
 Consumer Mobile Health Application Functional Framework
FHIRframe
Fast Healthcare Interoperability Resources for mobile devices open API
standard
Meds-on-FHIR:
Patient Medication Administration IG using FHIR profile
eHealth Consumers at the age of Hyper-personalization - euoffice@HL7.org

48. 48
EU WG guidelines to assess data validity &
reliability of mHealth apps: Issues at stake
Data protection, including security of health data
Big data
State of play on the applicable EU legal
framework
Patient safety and transparency of information
mHealth role in healthcare systems and equal
access
Interoperability
Reimbursement models
Liability
Research and innovation in mHealth
International cooperation
Access of entrepreneurs to mHealth market
eHealth Consumers at the age of Hyper-personalization - euoffice@HL7.org
Green Paper on Mobile Health
mHealth

49. 49
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
Europe’s 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 eStandards
in large scale eHealth deployment

50. 50
Digital health providers and their patients (UK)
Ref: How digital technology is transforming health and social care, Deloitte Center for Healthcare, 2015
eHealth Consumers at the age of Hyper-personalization - euoffice@HL7.org

51. 51
eHealth Consumers at the age of Hyper-personalization - euoffice@HL7.org

52. QUESTIONS

53. • 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
consumer’s 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?

54. THANK YOU !