DEVELOPING PATIENT JOURNEYS THE ePAG COORDINATING GROUP of the - - PowerPoint PPT Presentation

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Aug 15, 2023 132 likes •194 views

DEVELOPING PATIENT JOURNEYS THE ePAG COORDINATING GROUP of the ERN-ITHACA INITIAL SITUATION Unofficial gatherings back to back to other meetings How can we represent the other diagnostic groups How can we create a template that

SLIDE 1

DEVELOPING PATIENT JOURNEYS

SLIDE 2

THE ePAG COORDINATING GROUP

f the ERN-ITHACA

SLIDE 3

INITIAL SITUATION

 Unofficial gatherings back to back

to other meetings

 How can we represent the other

diagnostic groups

 How can we create a template that

suits every disorder

 Summarise our experience and

wishes in a template

SLIDE 4

CONTRIBUTION TO PATIENT ENGAGEMENT

Stage

Journ ey Tim elin e Clinical Presentation / Symptoms Identify Patient Needs Ideal Outcome / Support Pre- diagno sis    First sympt

   Diagno sis    First treat ment …    Surger y    Follow up care    etc.   

 Better understanding  Better knowledge  More confidence  Stronger voice

SLIDE 5

SUCCESS FACTORS

 Using a common template with

specific questions

 Describe our experience and

desires in a structured way

 Doing the mapping exercise in your

wn home environment

 Having a face2face meeting to

present your patient journey

 Having a facilitator collecting the

information to one document is crucial

SLIDE 6

LESSONS LEARNED

 Need of a facilitator  Commitment to the exercise  Different diagnosis/similar needs  Healthcare varies between

countries for some syndromes

 Important to get other parents

inputs

 Similar needs/psychological

support for parents

 More united group