Further reading

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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:  


New arrivals...

EFPIA and European Pharmacist Forum (EPF) Guideline on Working Together with Patient Groups (2018)

EFPIA Health Collaboration Guide (2017)

EFPIA and European Biopharmaceutical Enterprises (EBE) The benefits of personalised medicine to patients, society and healthcare systems (2018)

FDA Guidance Patient Focused Drug Development (2018)

FDA MyStudies APP (2018) Collection of Patient-Provided Information Through a Mobile Device Application

Patient Engagement Advisory Committee (PEAC) Patient Engagement in Medical Device Clinical Trials (2018)

PFMD Patient Engagement Quality Guide (2018)

PFMD, Myeloma Patients Europe (MPE) and Workgroup of European Cancer Patient Advocacy Network (WECAN) Reasonable Agreements between Patient Advocates and Pharmaceutical Companies (2018)

The PFMD Book of Good Practices (2018)

Further literature recommendations

Dewulf, L. (2014): Patient Engagement by Pharma—Why and How? A Framework for Compliant Patient Engagement

PEM Suite

EUPATI Toolbox 

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

Hoos, A. et al. (2015): Partnering With Patients in the Development and Lifecycle of Medicines: A Call for Action

Pushparajah et al. (2015): EUPATI: Collaboration between patients, academia and industry to champion the informed patient in the research and development of medicines

Senior, M. (2016): How Patients Are Transforming Pharma R&D

The Patient Engagement Quality Guidance by PFMD

Yeoman, G. et al. (2017): Defining patient centricity with patients for patients and caregivers: a collaborative endeavour