1,5
Danish experiences on establishing and
implementing a national model for patient-
reported information
You may know Denmark because of:.
Organization of the Healthcare System
App 5.6 mill inhabitants
The Danish Healthcare System
Free & Equal Access Financed by
general taxes
A high degree of decentralization Universal
Coverage
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”
Patient reported data
Health related behaviour
Health profile PRO-data Health condition Experience and
satisfaction
PRE-data
The aim and framing of PRO in Denmark
PRO-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 research
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
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
Development methodology for concerted national questionnaire definitions
Pilot installation and evaluation
Describing the patient trajectory and discussing purpose and content in questionnaires
Patient groups
PRO-packages
PRO-package ContentMeta data
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 material
Other info
PRO- bank National PRO Questionnaire bank
Development areas in the PRO program
Area 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
+ app. 30 pilot installations and 4 PhD projects Further there are app. 170 local projects
Pilot testing overview
Apoplexy Farsø
Knee/hip
Apoplexy
Diabetes
Knee/hip
Heart
Heart Knee/hip
Heart Diabetes
Gpregnan cy/birth Pregnancy
/birth Diabetes
Prerequisites for success
Governance managerial support and cooperation Technical infrastructure
Support from clinical environment Handling of legal perspectives
Economy
Governance
ØVRIGE INITIATIVER REGIONAL
Out patient treatment project
Ambuflex
Local projects
MUNICIPAL
Pilot projects on early discovery of frailty
Local projects
GENERAL PRACTICE
Web Patient
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
N A T I O N A L
National projects and implementation
NSP NATIONAL SERVICE PLATFORM
Secure login
Document Sharing
service
Consent service MyLog Treatment
relations
service Hospital
Municipality
Primary Care
Collection
XDS repository
Questionnaires XDS
PRO Questionnaire
bank (QFDD)
PRO system
2
Load Questionnaire
definition
Publisher 1
Saves Questionnaire
definition
Response 3
Citizen
Transfer response questionnaire
4
5 5
Retrieve Questionnaire
response
5
5 Retrieve Questionnaire
response
Retrieve Questionnaire
response
Retrieve Questionnaire
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
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
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
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
