Working together with patient groups. Sharing the EFPIA Patient Think Tank publication.

Europe is facing significant healthcare challenges due to an ageing population and increased prevalence of chronic disease and multi-morbidities. Equitable access is a major issue for many patients. In the past, industry, academia, healthcare professionals, regulators, and patient organisations have largely worked in silos. In practice, many decisions about patients’ care, medical research, health information and service design were taken without meaningful patient involvement. This led to inefficiencies and low value in process and outcomes. But this is starting to change. In recent years, many companies have developed new ways to incorporate patient insights and to collaborate with patients and patient organisations in a transparent and ethical way. This has led to better trials, better engagement, better communication throughout the entire life cycle of medicines – and ultimately better patient outcomes. This development is not yet universal but the direction of travel is there. The industry and patient organisations are committed to improving collaboration and building trust across the entire spectrum of stakeholders. This requires us to recognize the vital role that patient organisations and patient communities play in sharing knowledge as equal and valued partners. Alongside leadership from strong patient organisations, patients are coming together online to share information and experiences concerning their diseases and conditions. Capturing these insights and using this data to inform medical research could help to deliver more patient centered treatments and services.

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Advances in data capture and analysis techniques are leading to new areas of research and a better understanding of what really delivers improved patient outcomes. Yet, the use of health data is a sensitive topic. It is imperative that stakeholders work together to ensure that the potential of health data can be unlocked in a manner that promotes patient confidence and supports data security. The evolution in patient engagement is matched by the rapid progression of the science that underpins research and development of medicines. This progress allows for more personalised medicines that target individual patient needs. In order to support this transition, all stakeholders must explore new models of engagement between patients, healthcare providers and industry. It is clear that to meet this end, the health sector must place a greater emphasis on collaboration and new ways of working. This must form the basis for building a common vision of a healthier future for all Europeans.

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This is the forward of the 'Working together with patient groups' document published on the EFPIA website. The aim of this document is 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. This document was co-created by representatives of Patient Organisations and the research-based pharmaceutical industry through the EFPIA Patient Think Tank with support from EFPIA’s Ethics and Compliance Committee.

Download the document as a PDF.

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