Further reading
Want to dive deeper?
Find some Guidance
There are inspiring institutions, contributions and articles out there, that are of great value for patient engagement projects. Yet it can be challenging to take the time and find these materials.
Here is a selection of useful literature and websites:
Literature
DIA Conciderations (registration required)
EUPATI Toolbox (registration required)
eyeforpharma: Patient-Centric Profitability - Pharma’s Global Survey & Analysis
Farmanfarmaian, R. (2015): The Patient as CEO
Faster Cures (2016): Pain Points and Potential
FDA-Comissioner Statement March 30, 2018 on Patient Involvemnt in Clinical Trials
ParticipatieKompas (in Dutch only)
Senior, M. (2016): How Patients Are Transforming Pharma R&D
The Patient Engagement Quality Guidance by PFMD
Expected in Q2 2018:
Institutions, Organizations and Initiatives
ABPI (The Association of the British Pharmaceutical Industry)
CTTI (Clinical Trials Transformation Initiative)
DIA (Drug Information Association)
EFPIA (European Federation of Pharmaceutical Industries and Associations)
EUPATI (European Patients’ Academy on Therapeutic Innovation)
European Union Network for Patient Safety and Quality of Care, PaSQ Joint Action
EURORDIS ePAGs (European Organisation for Rare Diseases; European Patient Advocacy Groups)
IMI (Innovative Medicine Initiative)
IPFCC (Institute for Patient- and Family-Centered Care)
PCORI (Patient-Centered Outcomes Research Institute)
People Who (People who live with an illness)
PFMD (Patient Focused Medicines Development)
PIP (Patient Intelligence Panel)
STAMP (Safe and Timely Access to Medicines for Patients, European Commission Expert Group)
SYNaPsE – Synergising Patient Engagement
TRAIN (The Research Acceleration and Innovation Network)