Friends of PCIG

The International Alliance of Patient Organizations (IAPO)

IAPO is a global alliance representing patients of many different nationalities across disease areas and promotes patient-centred healthcare around the world.

Guideline International Network (GIN) Patient and Public Involvement Working Group

GIN PUBLIC Toolkit about Patient and Public Involvement in Guidelines: experiences of the organizations involved in guideline development.


INAHTA is a network that connects HTA agencies to each other to support knowledge sharing and the exchange of information, and also to serve as a forum for the identification and promotion of other interests of HTA agencies.

INAHTA Survey on the Involvement of Patients in HTA Activities Download survey report

This report compares survey data from 2005 and 2010 of INAHTA members. The objective was to obtain information on what INAHTA member organizations did and what they avoided in involving consumers in the HTA process.

World Health Organisation (WHO): Universal health

European Patients’ Forum

European Patients’ Forum: Patient Involvement in HTA in Europe – an interim report on EPF’s survey with HTA agencies

The European Patients Forum (EPF) completed three phases of research to understand the involvement of lay patients, informal carers and patient organisations EU member states HTA and decision making processes. The reports cover three areas of patient involvement:

  • HTA agencies
  • HTA appraisal committees and decision makers
  • Patient organizations

European Academy of Patients (EUPATI)

The European Academy of Patients is an initiative of IMI (Innovative Medicines Initiative) whose goal is to offer patients and their families opportunities for training in research and development of medicines and therapies, with an emphasis on scientifically valid information. Launched in 2012 with joint funding from the European Community and EFPIA (European Federation of Pharmaceutical Industries and Associations), it involves a consortium of 30 organizations and extends, for the moment, throughout 12 countries of the European Community.


To create an effective and sustainable network for HTA across Europe – by working together to help developing reliable, timely, transparent and transferable information to contribute to HTAs in European countries.

The International Society for Pharmacoeconomics and Outcomes Research (ISPOR)

Promotes the science of pharmacoeconomics (health economics) and outcomes research (the scientific discipline that evaluates the effect of health care interventions on patient well-being including clinical, economic, and patient-centered outcomes) and facilitates the translation of this research into useful information for health care decision makers to increase the efficiency, effectiveness, and fairness of health care to improve health.

Patients Active in Research and Dialogues for an Improved Generation of Medicines (PARADIGM)

This is a public-private partnership, co-led by the European Patients’ Forum and EFPIA, to advance meaningful patient engagement in the life cycle of medicines for better health outcomes. The PCIG is a member of this partnership.

Patient Focused Medicines Development (PFMD)

PFMD aims to transform the way in which we understand, engage, and partner with patients globally in the design and development of research and medicines by focusing on unmet patient needs. It brings together and synergizes disparate but complementary efforts that integrate the voice of the PATIENT across the lifecycle of medicine.