Further reading

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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


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

Institutions, Organizations and Initiatives

ABPI (The Association of the British Pharmaceutical Industry)


ADAPT SMART (Accelerated Development of Appropriate Patient Therapies, a Sustainable, Multi-stakeholder Approach from Research to Treatment-outcomes)


CTTI (Clinical Trials Transformation Initiative)


DIA (Drug Information Association)


EFPIA (European Federation of Pharmaceutical Industries and Associations)


EPF (European Patient Forum)


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)


onePatient


PatientsCount


PCORI (Patient-Centered Outcomes Research Institute)


PFMD (Patient Focused Medicines Development)


PIP (Patient Intelligence Panel)


Snow Companies


STAMP (Safe and Timely Access to Medicines for Patients, European Commission Expert Group)


SYNaPsE – Synergising Patient Engagement


TRAIN (The Research Acceleration and Innovation Network)



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