Topic outline


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 these interactions.

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.

patient involvement roadmap

What is patient advocacy?

100% Complete

Codes of Conduct

100% Complete
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.


0% Complete
Assessment Quiz

To receive a certificate for this course, you must be enrolled in the course (click on 'Enrol ...


  • CMR International Pharmaceutical R&D Factbook, Aug-2013 (Available at:
  • 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.