The EFPIA Patient Think Tank is a forum for an open exchange of ideas, information and perspectives between Patient Organisations and industry on topical issues impacting on patients.
Transparency and legal requirements can make the relationship between industry and patient organisations difficult to navigate for both parties. Recognising the wealth of knowledge and experience in the group, the Think Tank has also started to co-create guidance about how industry and patient organisations can work better together preserving the highest ethical and transparency standards.
As a first step, the group has developed a white paper to underline the rationale for interactions between the pharmaceutical industry and Patient Organisations, suggest the principles on which these interactions should be based, outline the points of collaboration through the life cycle of a medicine, discuss some of the challenges and potential solutions to interact as well as providing a list of resources to support meaningful/appropriate collaboration.
Building on this we have also developed a set of principles about remuneration of patients and patient experts and we are looking to continue this work, to advance patient engagement by making it easier to navigate for both industry and patient organisations.
Patient Centricity in Action – PTT Projects & initiatives
The Health Collaboration AwardThe Patient Think Tank has also initiated the Health Collaboration Awards to reward collaborative projects that have delivered patient benefit. The aim of the awards is to share best practice and provide food for thought and inspiration to stakeholders considering developing multistakeholder projects that benefit patients. In addition to this, the Think Tank has also developed a white paper to underline the rationale for interactions between the pharmaceutical industry and Patient Organisations, suggest the principles on which these interactions should be based, outline the points of collaboration through the life cycle of a medicine. As European Healthcare continues to face significant challenges it is critical that there is open dialogue between stakeholders. The Patient Think Tank plays an important role, providing a forum to share information, support best practice and exchange perspectives.
Data Saves Lives
The future of healthcare medical breakthroughs of the future will be increasingly defined by our ability to collect, share and understand health-relevant data in vast quantities. In 2018 the Patient Think Tank highlighted need for more, neutral and easily accessible information across Europe about how health data is used, what are the benefits for health research and healthcare systems and how responsible data sharing looks like.
Stemming from these initial discussions at the PTT and responding to the needs of the European patient community, the idea of Data Saves Lives was born.
Data Saves Lives is now a multi-stakeholder initiative lead by EPF with the aim of raising wider patient and public awareness about the importance of health data, improving understanding of how it is used and establishing a trusted environment for multi-stakeholder dialogue about responsible use and good practices across Europe.
What is IMI PARADIGM?
PARADIGM is a public-private partnership and is co-led by the European Patients’ Forum and EFPIA.
PARADIGM has developed much needed processes and tools for three key decision-making points: research priority setting, design of clinical trials and early dialogue. Building on advances at international level, PARADIGM integrated the needs, perspectives and expectations of all actors (including vulnerable populations) involved and also produced a set of metrics to measure the impact of patient engagement.
- Working together with patients - Principles for remunerating patients, patient organisation representatives & carers get_app
- Working together with patient groups get_app
- Working together with patient groups (French) get_app
- Working together with patient groups (Dutch) get_app
- Memorandum of Understanding - EFPIA Patient Think Tank get_app