Danish experiences on establishing and implementing a ...

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Danish experiences on establishing and implementing a national model for patient-reported informationKaren Marie Lyng, MD, PhD, MI, MBMHead of Department at Danish Health Data Authority

You may know Denmark because of:.

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Organization of the Healthcare System

App 5.6 mill inhabitants

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App 3500 GPs

The Danish Healthcare System

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Free & Equal Access

Financed by general taxes

A high degree of decentralization

Universal Coverage

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https://pro-danmark.dk/da/pro-english

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Background for the national PRO cooperation

Agreed in the annual economy agreement between state, regions and municipalities from 2017 and onward

A national steering committee was established. The aim of the committee is to establish a framing that supports the use of PRO in daily clinical practice and for quality improvement in all parts of the healthcare sector.

The implementation of PRO is part of the endeavours to establish more patient oriented and coherent treatment trajectories.

All regions are working on reorganising work processes skipping routine physical contacts and replacing them by digital contacts when relevant and possible

PRO steering committee:

National PRO-rådgiver Mogens Hørder

Conceptual frame for PRO in Denmark

”Patient reported data, are data regarding the patients health condition including physical and mental health, symptoms, health related quality of life and functional abilities”

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Patient reported data

Health related behaviour

Health profile PRO-data

Health conditionExperience and

satisfaction

PRE-data

The aim and framing of PRO in DenmarkPRO-data are to be used actively in the encounter between patient and healthcare professional• Supporting efficiency of care

• Empowering the patient

• Part of preparation for the clinical encounter

• Part of decision support

• Individualised patient care

PRO-data is a part of the patient record• Covered by the same legal demands

• Can be accessed by all health professionals that have a treatment relation with the patient

It shall be possible to use health relevant PRO-data cross-sectorial when relevant• Presupposes a shared semantic infrastructure

• It is regarded as valuable that the questionnaires are standardised and can be re-used –partly or fully -across trajectories.

It shall be possible to use PRO-data for quality improvement and research8

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Individual use of of PRO

Aggregated use of PRO

Why PRO?

Management of resources – value based management

National quality development and research

Local quality development

Basis for decision support

Increases patient empowerment

Planning and improvement of patient trajectories

Supports the active focus on the patients needs in the treatment

Support the prioritization of resources to where they are most needed

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PRO is a way to communicate my health problems to the health providers i meet

PRO makes it possible for me to take responsibility

for my recovery PRO makes me conscious about

my health problems, needs

and possible actions

The PRO life cycle

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Development methodology for concerted national questionnaire definitions

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Pilot installation and evaluation

The aim is to ensure relevans from a patient perspective and prepare the patients for the clinical coordinations groups

Describing the patient trajectory and discussing purpose and content in questionnaires

Patient groups

PRO-packages

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PR

O-p

ackag

e

Conte

nt

Met

a dat

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Recommended use & target group

Clinical decision algorithms

Questionnaire definition (QFDD)

Description: Questionnaire & development

ID, name, version etc.

Recommendation level

Search parameters

CE preparation, (evaluation reports etc.)

Other relevant materialOth

er i

nfo

PRO- bank

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National PRO Questionnaire bank

Development areas in the PRO programArea Status

Apoplexy Pilot testing

Arthrosis (knee and hip) Pilot testing and final evaluation February 2020

Screening for depression in somatic patients Pilot testing

Pregnancy and childbirth Workshops completed

Diabetes Pilot testing

Heart rehabilitation Pilot testing

Psoriasis Questionnaire development finished

Paliative care Workshops starts May 2020

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+ app. 30 pilot installations and 4 PhD projects

Further there are app. 170 local projects

Pilot testing overview

Apoplexy

FarsøKnee/hip

Apoplexy

Diabetes

Knee/hip

Heart

HeartKnee/hip

HeartDiabetes

Gpregnancy/birth

Pregnancy/birth Diabetes

Prerequisites for success

Governance managerial support and cooperation

Technical infrastructure

Support from clinical environment

Handling of legal perspectives

Economy

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Governance

ØVRIGE INITIATIVERREGIONAL

Out patient treatment project

Ambuflex

Local projects

MUNICIPAL

Pilot projects on early discovery of frailty

Local projects

GENERAL PRACTICE

Web Patient

Clinical coordination groupsPRO-secretariat

National PRO IT -infrastructure

National board for health and elderly care data

Partnership on PRO

Clinical Quality Registries

Value based management

Research

National treatment plans for chronic diseases

National board of health IT

National steering committee for PRO

‘My pathway’Local projects

NATIONAL

National projects and implementation

NSP NATIONAL SERVICE PLATFORM

Secure login

DocumentSharingservice

Consentservice

MyLog

Treatmentrelationsservice Hospital

Municipality

Primary Care

Collectionservice

XDS repository

QuestionnairesFor

sharing

XDSregistry

PRO

Questionnairebank (QFDD)

PROsystem

2Load

Questionnairedefinition

Publisher

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SavesQuestionnaire

definition

Response

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Citizen

Transfer responsequestionnaire

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V1.0 UK. 2019.08.24

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RetrieveQuestionnaire

response

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GREEN = PRO Infrastruktur

BLUE = PRO system

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RetrieveQuestionnaire

response

RetrieveQuestionnaire

response

RetrieveQuestionnaire

response

Questionnaire dev. process

PRO IT infrastructure

Pre- existing National (health) IT infrastructure Safe health data net

• Covering all healthcare institutions

• Standardized messages (MedCom)

Unique identifiers for all:

• Citizens

• Authorized health professionals

• Care providing organizations

Digital signature

Limited number of classifications systems

• Healthcare classification system (SKS) based on ICD ++, ICF, NPU in hospitals

• ICPC, ICF, NPU in primary care

• ‘Shared language’ (Fællessprog III) based on a SNOMED CT subset in the municipalities

National patient databases

• National patient registry

• Shared medication portal (FMK)

National health portal where citizens can access own health data

Mandatory technical standards

• HL7 – CDA, QFDD……., APIs

Governing bodies

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Clinical support

Standardised PRO questionnaires have a close relation to standardized patient

trajectories and a close relation to:

• Clinical practice guidelines – best clinical knowledge

• Standardized work practice

Standardization of questionnaires across health areas

Clinical communities must be involved and be responsible

Legal perspectives

PRO data are patient record data following the same legislation regarding:

• Access and access monitoring

• Demands on filing

Response time

• Patients must know how and when the PRO data are seen

• Patients and relatives must know how to act in case of health impairment

PRO questionnaires with algorithms are medical equipment

• Requires CE approval

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Economy is needed for

Development and maintenance of questionnaires

Development and maintenance of national IT-infrastructure

Local technical implementation

Change of work practice

Evaluation and subsequent changes

Research

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Status on national PRO in Denmark

Governance structure is established

Methodology for development of questionnaires are developed,established and accepted

Stakeholder and patient workshops conducted in seven focus areas

• Apoplexy, Knee and hip arthrosis, Screening for depression,Diabetes, Heart rehabilitation, pregnancy/maternity,

psoriasis

Methods for patient involvement are established

• In cooperation with relevant Danish Patient Organization

IT infrastructure is established

A huge effort regarding sharing of knowledge has been done

• Homepage, PRO seminars and conferences every half year, Pamphlets and video

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Take home messages

Take the time and resources to do things right and include all relevant actors

Standardization is needed in all aspects

Even relatively simple tasks put high demands on infrastructure

Governance is important

There is an intense need for evaluation as well as research in the area

Knowledge sharing

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In the end

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Contact us at:

www.prodanmark.dkhttps://pro-danmark.dk/da/pro-english

[email protected]