Introduction

The Importance of Patient Engagement in the Industry

Effective patient engagement in the industry matters due to a variety of reasons and developments:

  • Patients have a unique expertise regarding their disease and treatment: only they know what they really experience day by day

  • Patients' expertise is increasingly recognized by health care practitioners, regulatory and health technology assessment (HTA) authorities as very valuable and complementary to science and medical expertise

  • Patient expertise can create significant value for the industry

  • International standardization of patient collaboration with the industry is already on the way (e.g. PCORI, IMI, EUPATI, CTTI, PFMD etc.)

  • Patients continuously create and publish data. They talk about and exchange their data through social media and digital tools. Stakeholders can use this know-how for better medical solutions

  • Regulatory authorities, HTA bodies, patients and their health care providers will increasingly demand data on patient benefit that can only be generated in collaboration with patients (patient reported outcomes, real world evidence, etc.)