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An indispensable prerequisite for the implementation of patient engagement within the company is to know first of all what patients want. This includes their needs, desires, priorities and preferences. This is increasingly recognized in the pharmaceutical industry. In major publications on collaboration with patients, the European (EFPIA) and many national industry associations as e.g. the German Pharmaceutical Industry Association (BPI) or the Association of the British Pharmaceutical Industry (ABPI) have assigned great importance to this question.

What these services have in common is that they will only have a patient impact if they provide solutions to real problems. This can only be achieved if a detailed understanding of the patient journey (treatment path) and different patient typologies is given. Such understanding cannot be obtained if companies try to work only with physicians (whose role remains important), since physicians don’t live with the disease and often cannot know or judge why certain decisions are made by patients in daily life. The patient journey and what is relevant to them can only be systematically determined when it is done together with affected patients.

admedicum webinar: Enhancing clinical trial recruitment: successful industry strategies using patient engagement took place on 6 November 2019. We explored how the industry can engage with patients to support clinical trial recruitment rather than just taking the classic method of opening more trial sites. 

admedicum, in collaboration with WAPO, Lupin Pharmaceuticals held a PEGASUS Patient Engagement Networking event on 10 December in Leiden. We hosted around 40 attendees from patient organizations, interested patients, companies, and other stakeholders in healthcare in an informal networking event over drinks and snacks at WAAG restaurant in Leiden, the Netherlands. 

 

A study design that is acceptable to patients may not only be important for the actual relevance of a clinical study, but also for the speed of recruitment and protocol-compliant retention during the study. Patient involvement can therefore directly influence time to market.

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