Patients and patient
representatives are invited to collaborate with pharmaceutical
professionals, researchers, regulators and HTA representatives in the
research and development of a medicine. There are various ways in which
patients can be engaged, and throughout this lessons, you will learn
more about the steps and processes where patient involvement adds value.
It will also explain in details the codes of conduct and framework for
The Roadmap of Patient Involvement was developed and published by EUPATI authors in 2016-2018. It describes the various steps and milestones along the R&D spectrum, and also suggests certain concrete steps and processes where patient involvement not only makes sense but also actively adds value. While not exhaustive, the list of tasks is also divided according to the level of expertise on the side of the participating patient suggested for the given task: from medium to high expertise.
The Roadmap is a simple but practical tool that can guide the work of patient experts, patient engagement professionals, researchers and anyone who would like to explore and understand how patients can contribute to better research, and more meaningful and relevant outcomes.
What is patient advocacy?
Codes of Conduct
Why do we need codes of conduct?
We need codes of conduct to
formalise the relationship and interactions between all applicable parties to
create an environment of trust, obligation, transparency and consistency. Codes
of conduct express the importance of the interaction they describe. There is no
comprehensive template for what a code of conduct must cover, as this is
dependent on the specific activities which are governed, we therefore list
below two examples of codes of conduct currently in use in Europe for the
interactions between patient organisations and the pharmaceutical industry.
Types of Collaborations in Medicines Discovery and Development
- CMR International Pharmaceutical R&D Factbook, Aug-2013 (https://images.prod-techstreet.com/direct/2013CMRFactbookExecSum.pdf).
- Garrido, M. V.; Gerhardusb, A.; Røttingenc, J.-A.; Bussea, R. Health Policy 2010, 94, 196–202.
- Thariania, R.; Veenstraa, D. L.; Carlsona, J. J.; Garrisona, L. P.; Ramseyb, S. Molecular Oncology 2012, 6, 260–266.
- Loregian, A.; Palù, G. Trends in Microbiology 2013, 21, 261-264.
- Lessl, M.; Schoepe, S.; Sommer, A.; Schneider, M.; Asadullah, K. Drug Discov Today 2011, 16, 288-292.
- Goldman, M. Clinical Pharmacology and Therapeutics 2012, 91, 418-125.
- Twombly, J.; Shuman, J. Strategic Alliance Magazine 2011, Q2 Issue, 13-15.