Co-creating a patient engagement impact framework
Recognising patients as key stakeholders and embedding the patient voice, in a meaningful way, into every stage of the medicine’s development process is gradually being recognised as a means to deliver value to both life science companies and to patients and their care partners.
To identify best practices, the difference made – or the ‘impact’ of engaging with patients – must be measured. Ipsen and MediPaCe explored patient experts’ and patient organisations’ (PO) perceptions and experiences with impact measurement and worked with them to co-create an impact framework for internal company utilisation.
Depth interviews were conducted with 13 patient organisation representatives and patient experts, exploring their experiences of engagement and thoughts on 23 candidate impact measures categorised into five groups:
- Medicines R&D priorities
- Clinical trial design
- Regulatory and market access submissions
- Product support and information
- Disease support and information
Findings were discussed and validated with a patient-led working group. The full results outlining how the impact measures were discussed and revised have been published. Here, we examine how patients view the impact from projects and their experiences of discussing impact measurement with life science companies.