Co-creating with patients an impact framework across the medicine’s life cycle: a qualitative study exploring patients’ experiences of involvement in and perceptions of impact measures

Table 4 Core criteria for interview participants

*EITHER* Leadership OR Representation *AND* two of Capabilities, Impact or Collaboration Leadership: Seniority and recognised leadership position within their country, regional or global PO (Head, Director, Vice President, President or the equivalent, board member) and broader patient community Representation: Connected to and representative of a significant number of patients and/or POs; ability to speak on behalf of them representing their interests Capabilities: Knowledge, literacy, advocacy training and/or experience of medicines development process (e.g. knowledge and/or experience of clinical trial protocol development or patient support programme development, review of any R&D documents and contribution to R&D/Medical advisory boards, membership in Community Advisory Boards) and/or EUPATI, EORTC or other R&D training programme Impact: Knowledge, activism and expertise on impact and value of patient engagement Collaboration: Experience of working with pharmaceutical companies, regulatory agencies and/or HTA bodies as well as contribution to cross-sectoral initiatives (e.g. PFMD, PARADIGM, INVOLVE, NHC etc.)

PO = Patient Organisation, EUPATI = European Patients’ Academy, EORTC = European Organisation for Research and Treatment of Cancer, PFMD = Patient Focused Medicine Development, INVOLVE = a public participation charity, US NHC = National Health Council

ISSN: 2056-7529