Research and development

The Association of Medical Research Charities (AMRC) states in its publication An Essential Partnership: A guide for charities working with industry

“… charities can play a key role in representing the patient voice because they are in the unique position of having direct contact with patients while at the same time funding medical research.”

The National Institute for Health Research’s INVOLVE initiative explains more about public involvement in research and features some practical tools and resources for researchers and others on its website.

The ABPI is a member of an EU Commission project called PARADIGM, which is identifying the tools needed by both industry and patient and medical research charities to improve public and patient involvement in research and development.

PARADIGM is also working to develop metrics to evidence why public and patient involvement in research and development is beneficial.

EFPIA’s guide on Working Together with Patient Groups sets out how patient engagement across the lifecycle of a medicine, including at the R&D stage, can provide critical insights, for example in contributing to study design, informed consent forms and layperson summaries. It was developed by the EFPIA Patient Think-Tank (PTT) in collaboration with EFPIA’s Ethics and Compliance Committee, and provides helpful suggestions and solutions for some of the challenges.

“… charities can play a key role
in representing the patient voice
because they are in the unique
position of having direct contact
with patients while at the same
time funding medical research.”

Related content in this section:

• Working with patients and patient organisations - a sourcebook for industry
• Principles and agreements
• Definitions
• Events and meetings
• Research and development
• Product launches
• Payment
• Conclusion