Why patient engagement matters

10 reasons why patient engagement is important to clinical research

 

Hopefully you share our perspective that patient engagement should be fully integrated into drug development. Just in case, you know anyone that needs convincing that effective patient engagement in the industry matters, here is our non-exhaustive list:

 

  • Working together to address a common goal (addressing unmet patient needs for example) with an alliance of like-minded stakeholders, instead of any individual or single organisation will almost always have a higher change of succeeding

 

  • Patients have a unique expertise regarding their disease and treatment: only they know what they really experience on a daily basis

 

  • Involving patients early builds relationships and trust between organizations, companies, and individuals. When challenges arise in clinical development, those relationships can be invaluable when problem solving and coming up with actions to mitigate those challenges. For example, patient experts can help industry understand why patients might be hesitant to participate in clinical trials and help design patient facing materials or websites to explain the clinical trial.

 

  • 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 in areas like clinical trial protocol development and recruitment

 

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

 

  • Patients continuously create and publish data. They talk about and exchange their data through online communities, on social media and using digital tools. With the right safeguards in place, stakeholders can use this know-how for designing improved 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.)

 

  • Patient involvement has the potential to support patient empowerment and contribute to the democratisation of the research process

 

  • Industry is increasingly onboard with patient engagement, EFPIA Director Nathalie Moll recently wrote, "Patient Engagement. A personal, organisational and cross-industry priority that needs to drive what we do in healthcare, more than ever before."

 

 

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