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Table 1 Overview of first four years of patient involvement in the Fex-Can project

From: What makes it work? Exploring experiences of patient research partners and researchers involved in a long-term co-creative research collaboration

Patient involvement meetings

PRPs

Researchersa

Half-day meetings on Saturdays, including lunch

10 former patients

2 mothers of former patients

9 senior researchers, postdocs, doctoral students

2–3 meetings yearly, total of 10 meetings

Median number PRPs at each meeting: 7

Median number researchers at each meetingb: 5

 

Each PRP attended a median of 5 meetings

Each researcher attended a median of 7,5 meetings

  1. PRPs: Patient research partners
  2. a The composition and number of research group members varied over the collaboration period
  3. b including two senior researchers (project leaders) who both attended all but one meeting