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  • Working with patients and patient organisations - a sourcebook for industry
  • Research and development

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.”

 

What the ABPI Code says

Written agreements must be in place and companies must disclose details of the patient organisations to which they provide financial or significant non-financial support, under Clause 27 of the ABPI Code.

As with any activity, transparency is vital in building and supporting trust. Clause 13 of the ABPI Code covers clinical trials and non-interventional studies of marketed medicines and sets out the requirements for disclosure

 

Working with patients and patient organisations - a sourcebook for industry

  • Principles and agreements
  • Definitions
  • Events and meetings
  • Research and development
  • Product launches
  • Payment
  • Conclusion

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  • Working with patients and patient organisations - a sourcebook for industry

ABPI

The Association of the British Pharmaceutical Industry is a company limited by guarantee registered in England and Wales 
(registered number 09826787) and its registered office is at 7th Floor Southside,105 Victoria Street, London, SW1E 6QT.
Telephone +44 (0) 207 9303477

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Prescription Medicines Code of Practice Authority (PMCPA)

The Prescription Medicines Code of Practice Authority (PMCPA) was established by The Association of the British Pharmaceutical Industry to operate the ABPI Code of Practice for the Pharmaceutical Industry independently of the ABPI. The PMCPA is a division of ABPI which is a company registered in England and Wales (registered number 09826787) with its registered office at 7th Floor, Southside, 105 Victoria Street, London SW1E 6QT.

Office of Health Economics (OHE)

The Office of Health Economics (OHE) is a company limited by guarantee registered in England and Wales (registered number 09848965) and its registered office is at 7th Floor Southside, 105 Victoria Street, London, SW1E 6QT. OHE provides independent research, advisory and consultancy services on policy implications and economic issues within the pharmaceutical, health care and biotechnology sectors.