connected health data meets the people: diversity, standards, and trust

@HL7 @efmi @chronaki @fridsma @eva_turk @annemoen_oslo

Connected health data meet the people: diversity, standards, and trust

The EFMI – HL7 partner event,

Thursday May 11th, 2017

www.efmi.org www.HL7.eu

This event is a continuation from previous partner events

2015 2016

http://www.efmi.org

http://www.HL7.eu

• Federation of • 31 National societies for Medical Informatics in Europe• Institutional members from Academia and Industry

• Founded in 1978

• Activities • Medical Informatics Europe conferences, annually• Special topic conferences • Collaboration in research and policy at European level• 14 standing working groups,

• From standards, human factors, evaluation to education

www.efmi.org

http://www.efmi.org

4

HL7 Foundation: who we are..

HL7 Vision: A world in which everyone can securely access and use the right health data when and where they need it.

May 11, 2017

eHealthWeek2017

Malta

HL7 the best and most widely-used

eHealth standards since 1986

HL7 v2

Clinical Document Architecture

CIMI

HL7 FHIR

19 National Affiliates in Europe (~38 wordwide)

European HL7 foundation established in 2010

European Funded Research Projects

Annual HL7 in Europe Newsletter

Website: www.HL7.eu

eHealth policy & Research

SDO Joint Initiative Council

www.estandards-project.eu

Vision of eStandardseHealth Standards and Profiles in Action for Europe and Beyond

• Vision of the global eHealth ecosystem

– people need navigation tools for safe and informed health care

– interoperability assets fuel creativity, entrepreneurship, and innovation

• eStandards will:

– nurture digital health innovation

– strengthen Europe’s voice & impact

– enable co-creation and trusted provider-user relationships

Base Standards

Use Case basedStandards Sets

Assurance and Testing

LiveDeployment

Feedback and Maintenance

Tooling and Education

Forums and Monitoring

eStandards

www.estandards-project.eu

What do we need to make digital health work with standards and interoperability?

• Co-create

–to make it real using standards

• Governance

–to make it scale to large-scale deployment

• Alignment

–to make it stay in a sustainable way

© HIMSS Europe GmbH 8

CONNECTED HEALTH DATA MEET THE PEOPLE:

DIVERSITY, STANDARDS, AND TRUST

Using health data in a connected world requires new competencies, a

personal digital health compass calibrated to individual personalities

and needs.

– Patients and clinicians able to collect & manage data,

– Data-operational informatics professionals to analyze data,

– Cutting-edge researchers, innovators, and educators to apply knowledge

…will take learning health systems to the next level.

Topics for discussion:

– strategies for empowering and activating people to engage, share and use their

health data.

– diversity, trust, and HL7 FHIR to open up access and capacities and manage

data safely for patients, care-givers, and the health system.


PANELISTS

• Maturing a Telemedicine Infrastructure (MaTIS)- building the

human capital

• Health Professional Education in Biomedical & Health

Informatics: Accreditation and Certification – EFMI AC2

Initiative

• Digital health literacy: a necessity for Activating Citizens

• “Internet of People”: the elements of quality, safety and trust

• Putting it all together: The need for a learning health system

• Discussion

Maturing a Telemedicine Infrastructure (MaTIS)- building the human capital

Morten BRUUN-RASMUSSEN

[email protected]

MEDIQEFMI-HL7 Partner event. Malta. May 11th 2017

Denmark

5,5 mill. inhabitants

90,1% Danish

9,9 % other

5 Regions

98 Municipalities

Equal and free access to healthcare

MEDIQ

http://upload.wikimedia.org/wikipedia/commons/9/9c/Flag_of_Denmark.svg

http://upload.wikimedia.org/wikipedia/commons/9/9c/Flag_of_Denmark.svg

http://en.wikipedia.org/wiki/File:National_Coat_of_arms_of_Denmark.svg

http://en.wikipedia.org/wiki/File:National_Coat_of_arms_of_Denmark.svg

http://www.metteabildgaard.dk/blog/wp-content/uploads/2009/06/christiansborg1.jpg

http://www.metteabildgaard.dk/blog/wp-content/uploads/2009/06/christiansborg1.jpg

Disseminate telemedicine home monitoring to citizens with COPDin the entire country before the end of 2019

The dissemination is anchored in five programs with participation of regions and municipalities, which are responsible to ensure progress and realization of benefits

In addition an collective public portfolio steering group is established, to coordinate the national prerequisite projects and monitor the progress

Launch of preparing a national telemedicine infrastructure

Economic agreement for 2016

12 MEDIQ

NorthDK

(Region,Municipalities,

GP’s)

CentreDK


GP’s)

SouthDK


GP’s)

SealandDK


GP’s)

CapitalDK


GP’s)

Projects

Possiblecross sector

projects

Services&

logistics

Cross sectorprojects

Collective public portfolio steering group

Dissemination to patients with COPDis anchored in five programs

Collective public portfolio secretariat

ClinicalGuidelines

Nationalinfra-

structure

NewBusiness

Case

Blue: Municipal/regional ownershipRed: Collective public ownership

Nationalprerequisite projects

National boardof eHealth

Comprehensive governance

MEDIQ13

MaTIS

Scope?

MEDIQ14

Scope

MEDIQ15

Data collected in the citizens home are

stored here

The citizens data can be retrieved here

Maturity of the infrastructure

MEDIQ16

MaTIS. TRL 7+. March 2017

Project management

Work Plan (WPs, Activities …) - as usual

Risk management

Develop a plan B for all critical activities ahead

If a potential risk, which will delay the project is detected, start plan B in parallel

Project and risk management

17 MEDIQ

Complexity management

Keep It Simple St…. (KISS)

The complexity shall be ..

Do not try to solve all problems

Engage the community

Inform also about what the solution not can do

Listen to other views/critic

Complexity management

18 MEDIQ

Handing over the infrastructure

MEDIQ19

Acknowledgement

MEDIQ

The National Board of eHealth Datawww.sundhedsdatastyrelsen.dk

MedComwww.medcom.dk

http://www.sundhedsdatastyrelsen.dk/

http://www.medcom.dk/

http://sundhedsdatastyrelsen.dk/da

http://sundhedsdatastyrelsen.dk/da

Health Professional Education in Biomedical & Health Informatics:

Accreditation and Certification – EFMI AC2 Initiative

John Mantas

Chair of the EFMI AC2 Task,

Hon Fellow EFMI

Accreditation

What• Accreditation is a diligent evaluation and monitoring

peer review process assuring that educational programs

and institutions meet academic standards, operational

integrity and quality.

Why• Accreditation is proof that a collegiate program has met

standards essential to produce graduates ready to enterthe critical fields of biomedical and health informatics.

Certification

What

• Certification is a credentialing process that

demonstrates and honor qualifications that an individual

can perform a specific professional role, or set of tasks.

Why

• Certification in Health Informatics is a requirement for

many professionals in many clinical institutions. Even

those professionals having acquired earlier degrees in

related fields to Health Informatics is required to update

and certify their current knowledge and skills.

What, Why, How (cont.)

There is a great number of European Universities and

Institutions implementing and having established

programs (undergraduate and postgraduate) in the

field of Biomedical and Health Informatics.

Visit the WG EDU page on www.efmi.org

http://www.efmi.org/

• In Europe accreditation of academic programs is

provided as a requirement by governmental

agencies looking for program infrastructure,

integrity and quality.

• However, added value will be visible for a programs

when a Scientific Organization, such as EFMI,

provides accreditation in terms of peer reviewing

the contents of the curriculum whether meeting the

educational standards in our field of BMHI.

What, Why, How (cont.)

Procedure for Accreditation

Stepwise Approach procedure suggested for the

Implementation of the Accreditation, as follows:

Step 1: The program to be accredited applies via its authorities

(Dean, Program Director) to EFMI.

Step 2: The program is asked to prepare a self assessment report

(where also scope of program is defined). Template is provided.

Step 3: Accreditation Committee appoints a 3 members site visit

committee in the field of BMHI and experience in educational

programs; objectivity, independency, and transparency should be

fully observed.

Step 4: The site visit committee reviews the self-assessment

report and makes observations for possible additional

information to be provided.

Step 5: A site visit is agreed and planned with the program

authorities and the site visit committee.


Step 6: The site visit committee provides an evaluation report

and judgement made based on predefined criteria and the result

and recommendations are announced at the spot

Step 7: The report is submitted to the Accreditation Committee.

The program director may provide additional information or

mention factual errors on the report. Final decision is taken by

the Accreditation Committee on advice from the site visit

committee.

Step 8: Accreditation is provided to the Program for a period of

3 years and program director is informed about the expiration

date.


SWOT Analysis

Strengths

• EFMI is a European federation of national associations situated

in most European countries. The scientific and professional

community of Biomedical and Health Informatics is reflected

in EFMI as it is yearly depicted in the MIE Conferences.

Weaknesses

• EFMI is a volunteer organization without solid professional

secretariat support. Also decisions are delayed due to the

internal procedures. Clear mandates should be given to the

Accreditation and Certification Committee to ensure

minimization of bureaucracy leading to delays in

implementation and decisions taken.

SWOT Analysis

Opportunities

• Very few Universities/Institutions with programmes in

Health Informatics have been accredited by an

International organization. Similar initiatives had little

effect in Europe. In addition no Certification

programmes are established yet in Europe in our field.

Threats

• Other international organizations, some of them, more

professional ones than EFMI, have initiated similar

actions and they may apply them in Europe very soon.

Conclusions

• EFMI is determined to play an important role in both Accreditation and

Certification in the field of Biomedical and Health Informatics.

• The Scope of EFMI as a not-for-profit organization is to offer services to

the academic institutions and to professionals in health Informatics in

Europe. All cost related calculations will be based strictly on this

principle.

• To achieve this end we will require the active involvement and support of

our community and partners.

Digital Health Literacy:

a necessity for Activating People

Anne Moen, RN, PhD, FACMIProfessor, Director UiO:eColab

IMIA Vice President and Past President EFMI

Oslo, Norway [email protected]

@ annemoen_oslo

mailto:[email protected]

Citizens – what do they do ? Examples of storing and organizing health information artifacts in 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 Health Literacy

@ annemoen_oslo

…. the ability to seek, find, understand,

and appraise health information from

electronic sources ….

… apply the knowledge gained to

addressing or solving a health problem …

Norman & Skinner (2006)

Personalized – universally designed tools

• Requirement – patient & family participates actively– “the patient will see you now”

– “let patients’ help”

• Access

– Right to personal information in digital formData Portability (Directive 2016/679/EU), Re-use of public sector

information (Directive 2013/37/EU), Cross border healthcare (Directive

2011/14/EU)

• Presentation – Collaboration – Contribution – Confusion

– Accountability – Autonomy -

@ annemoen_oslo

Organization - Meal plan

- Suggested food

- Hot – cold drink

Orientation - Time, day

- Meals reported

- Friends and family

Visualization - Feedback when

reporting meal/drink

- Overview; day, week

Opportunity: support diet – healthy aging (1)

@ annemoen_oslo

Illustrate - # – type of meals

- Nutritional value

- Day – Week

Daily goals- Protein

- Energy

- Fluid

Overview- List of selection

- Grocery shopping

- Companion

Opportunity: Visualizing nutritional value (2)

@ annemoen_oslo

Activate citizens

@ annemoen_oslo

• Require focus at

– Tools that are usable for the purpose

– Easier access to data actionable knowledge

– Presentation that is easy to grasp

– Skills and capacities

– Personal integrity

– Trust in data and people

DNV GL © 2017

Ungraded

06 October 2016 SAFER, SMARTER, GREENERDNV GL © 2017

Ungraded

06 October 2016

Internet of People

40

Eva Turk, Stephen McAdam

DNV GL

DNV GL © 2017

Ungraded

06 October 2016

DNV GL Vision for Healthcare

41

Free from

preventable

harm

Effective and efficient

Personalized

to individual

needs

Seamless in delivery

With

equitable

access

DNV GL © 2017

Ungraded

06 October 2016

16 May 2017

42

Internet of People

Personalized,

Predictive,

Participatory and

Preventive

healthcare.

Network of collective

intelligence and

interactive

communication among

our digital selves

DNV GL © 2017

Ungraded

06 October 2016

The biggest risks to the adoption of Internet of People

44

1. Ownership and access of which data2. Inequality in access3. Different rules and regulations in different geographical 4. Different IT laws and regulations in different countries 5. Risk of intellectual property rights infringement

1. Low acceptance of the Internet of People due to resistance to change 2. Professional resistance 3. Perceived as conflicting with some cultural values and beliefs 4. Time consuming5. Confusion in how digital data can and should be analysed

DNV GL © 2017

Ungraded

06 October 2016

How can DNV GL start building trust?

47

SharingExploring how our 3rd party role could facilitate the responsible sharing of quality assured sensitive genomic data

AssuranceHarmonizing, standardizing and developing mechanisms for quality assurance

GovernanceDeveloping models to assess the maturity of big data management and data quality

DNV GL © 2017

Ungraded

06 October 2016

SAFER, SMARTER, GREENER

www.dnvgl.com

www.dnvgl.com/internet-of-people

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[email protected]

www.dnvgl.com/internet-of-people

CLICK TO EDIT MASTER TITLE STYLE

• Click to edit Master text styles– Second level

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Putting it all together: The need for a learning health system

Doug Fridsma, MD, PhD, FACP, FACMI

President and CEO, AMIA

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• Third level

© HIMSS Europe GmbH 50© HIMSS Europe GmbH 50

Patient

PATIENTS WILL BE FIRST ORDER PARTICIPANTS IN

HEALTH, HEALTHCARE AND RESEARCH

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Patient Practice

EHR WILL NOT BE THE MOST IMPORTANT

HEALTH IT

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• Third level


EHRs will not be the most important Health IT



• Third level


Patient Practice Population

NON-HEALTH DATA WILL BE COME BIGGER

THAN HEALTH DATA

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• Third level


Patient Practice Population Public

RESEARCH WILL BE KEY TO TRANSLATING

KNOWLEDGE INTO GENERALIZABLE ACTION

55



• Third level


Patient Practice Population Public

THE BACKBONE OF THE THE LEARNING HEALTH

SYSTEM: A SYSTEM OF HEALTH LEARNERS

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Informatics, standards, workforce, business drivers, governance

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