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A paradigm shift: Sharing Patient Reported Outcome via a National Infrastructure
Medinfo August 2019 Karen Marie Lyng
Development methodology for concerted national questionnaire definition
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A paradigm shift: Sharing Patient Reported Outcome via a National - - PowerPoint PPT Presentation
A paradigm shift: Sharing Patient Reported Outcome via a National - - PowerPoint PPT Presentation
A paradigm shift: Sharing Patient Reported Outcome via a National Infrastructure Medinfo August 2019 Karen Marie Lyng Development methodology for concerted national questionnaire definition 2 Developing areas for PRO in the program Area
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Developing areas for PRO in the program
Area Status
Apoplexy Pilot testing Arthrosis (knee and hip) Pilot testing Screening for depression in somatic patients Pilot testing Pregnancy and childbirth Workshops completed Heart rehabilitation Workshops completed Diabetes Workshops completed Psoriasis Workshops starts september
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Contains and metadata in a PRO-package
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PRO-package Content Meta data Recommended use & target group Clinical decision algorithms Questionnaire definition (QFDD) Description: Questionnaire & development ID, name, version etc. State Search parameters
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The national Danish PRO infrastructure
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TRL scale to access the maturity
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The most important findings during the questionnaire development process
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Many issues need to be clarified by the patients before and between stakeholder workshops Most patient pathways are cross sectorial, but cross sectorial workflows are complex and not well described Most previous knowledge on patient reported information is derived from mono sectorial use in hospitals as digitalized Patient Reported Information only has been scarcely used in primary care Use of Patient Reported information is a fundamental cultural transformation to health professionals Legal clarification of who may have access to what kind of Patient Reported Information is important Electronic questionnaire systems including algorithms are medical devices and thus must be CE marked in the EU
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Slides fra workshop – ved ikke om de kan bruges til noget
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The Danish Healthcare System
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Universal Coverage Free & Equal Access Financed by general taxes A high degree of decentralization
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Organization of the Healthcare System
App 5.5. mill inhabitants
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App 3500 GPs
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Where to go to if you get ill?
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General Practitioner Specialist Dentist Private hospitals Hospitals Emergency ward Patient
Covered by PRO
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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 condition Experience and satisfaction PRE-data
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The aim and regulation of PRO in Denmark
PRO-data are to be used actively in the patient-healthcare professional encounter
- Supporting efficiency of care
- Empowering the patient
- Part of preparation for the 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
It shall be possible to use PRO-data cross sectorial when relevant
- Presupposes a shared semantic infrastructure
It shall be possible to use PRO-data for quality improvement and research
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The national Danish PRO infrastructure
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Question to the audience
Question to the audience is to be put in
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Co-creation and co-operation
Use of a participatory approach to involve stakeholders in Denmark Sanne Jensen
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‘Development’ af questionnaires and decisions on field of application
Stakeholder workshop 1 Test of content and use Preparation Month 0-3 Month 4-7 Month 7 - 15 Execution Stakeholder workshop 2 Stakeholder workshop 3 Stakeholder workshop 4 Patient workshop 1 Patient workshop 2 Patient workshop 3 Patient workshop 4
Execution
Meetings with stakeholders Meeting(s) with patient
- rganization(s)
Preparation
Test of content Test og content and use
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Co-creation with patients
Aim: to ensure relevance and understanding of questions and possible answers. Results from workshops are used in workshops with other stakeholder
Describes patient journey and discusses purpose, questionnaires and use
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Co-creation with stakeholders
Aim: to identify and determine relevant questions based on results from workshop with patients
Decides purpose and use as well as content of questionnaires Participants: Health care professionals from all sectors patients, patient
- rganizations, health care scientific organization, quality managers
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Status on national PRO in Denmark
Methodology are developed/established Stakeholder and patient workshops conducted in six focus areas
- Apoplexy, Knee/hip arthrosis, Screening for depression
- Diabetes, Heart rehabilitation, pregnancy/maternity
Patient involvement
- In cooperation with Danish Patient Organization
- Cooperation and involvement of relevant patient organizations
- Patient workshops have been conducted
IT infrastructure are established Classification og terminology have started Sharing of knowledge
- Homepage
- PRO seminars and conferences every half year
- Pamphlets and video
Three new focus areas
- Psoriasis, Palliation and Multiple Sclerosis
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PROsekr@sundhedsdata.dk PRO-danmark.dk
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Question to the audience
Question to the audience is to be put in
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