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 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 3

Contains and metadata in a PRO-package Description: Questionnaire & development Recommended use & target group Content Questionnaire definition (QFDD) PRO-package Clinical decision algorithms ID, name, version etc. Meta data State Search parameters 4

The national Danish PRO infrastructure 5

TRL scale to access the maturity 6

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The most important findings during the questionnaire development process 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 8

Slides fra workshop – ved ikke om de kan bruges til noget 9

The Danish Healthcare System Universal Free & Equal Coverage Access Financed by A high degree of general taxes decentralization 10

Organization of the Healthcare System App 5.5. mill inhabitants App 3500 GPs 11

Where to go to if you get ill? Specialist Private hospitals Hospitals General Practitioner Patient Emergency ward Dentist Covered by PRO 12

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 Experience and Health related Health condition satisfaction behaviour Health profile PRE-data PRO-data 13

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 14

The national Danish PRO infrastructure 15

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Question to the audience Question to the audience is to be put in 17

Co-creation and co-operation Use of a participatory approach to involve stakeholders in Denmark Sanne Jensen 18

‘Development’ af questionnaires and decisions on field of application Month 0-3 Month 7 - 15 Month 4-7 Execution Preparation Test of content and use Preparation Execution Meeting(s) with Patient Patient Patient Patient Test of patient workshop 1 workshop 3 workshop 2 workshop 4 content organization(s) Test og Stakeholder Stakeholder Stakeholder Meetings with Stakeholder content and workshop 4 workshop 1 workshop 2 stakeholders workshop 3 use 19

Co-creation with patients Describes patient journey and discusses purpose, questionnaires and use Aim: to ensure relevance and understanding of questions and possible answers. Results from workshops are used in workshops with other stakeholder 20

Co-creation with stakeholders Decides purpose and use as well as content of questionnaires Aim: to identify and determine relevant questions based on results from workshop with patients Participants: Health care professionals from all sectors patients, patient organizations, health care scientific organization, quality managers 21

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 22

PROsekr@sundhedsdata.dk PRO-danmark.dk 23

Question to the audience Question to the audience is to be put in 24