New Patient Group Targets DIA EuroMeeting

The newly formed European Patients' Academy on Therapeutic Innovation (EUPATI) faces its first major test at a public meeting to be held in Copenhagen during the 2012 Drug Information Association (DIA) EuroMeeting on the afternoon of March 27.

EUPATI was launched on February 1, 2012. Over the next five years, it will develop educational material, training courses, and a public Internet library to educate patient representatives and the lay public about all processes involved in medicines development. Topics will include personalized and predictive medicine, design and conduct of clinical trials, drug safety and risk/benefit assessment, pharmaco-economics, and patient involvement in drug development.

The project leaders will speak about the initiative at the Hotel Bella Sky Comwell, next to the DIA EuroMeeting's conference center. The "open-door" satellite session is designed for all DIA EuroMeeting attendees, as well as organizations based in Denmark. Pre-registration for this session is not mandatory, but is recommended.

The new group is sponsored by the Innovative Medicines Initiative (IMI), a joint undertaking between the European Union and the pharmaceutical industry association, the EFPIA. IMI supports collaborative research projects and builds networks of industrial and academic experts in order to boost pharmaceutical innovation in Europe.

"Well informed patients and carers have a key role to play in the implementation of patient-centered clinical research strategies, approval processes, access to treatments, and treatment optimization," noted EUPATI's founders on its website. "Pharmaceutical medicines development is a highly regulated, costly, long, and complex process that is largely unknown to the lay public. Benefits and risks of existing and new treatment alternatives are difficult to understand for patients and the public. In an era of growing demand and emphasis on both quality and sustainability of healthcare, it is critical to address this major gap in public perception and knowledge."

Education

The group believes that with appropriate training, patient advocates can become accepted partners in scientific, ethical, and regulatory committees, which can accelerate and improve clinical trials, drug development, and access strategies. Furthermore, educating the public can help reduce unfair scrutiny of clinical research and therapeutic innovation. It aims to provide educational material in seven European languages.

Consortium

The consortium consists of 29 leading pan-European patient organizations, academic and not-for profit organizations, as well as European Federation of Pharmaceutical Industries and Associations (EFPIA) member companies.

The project coordinator and managing entity is the Brussels-based European Patients' Forum (EPF), while the project secretariat is based in Riemerling, Germany, under Director Jan Geissler.

The group has a project advisory board comprising 14 individuals—including Peter O'Donnell, Applied Clinical Trials' long standing European columnist—as well as a regulatory advisory panel with members from the European Medicines Agency, Germany's BfArM (Bundesinstitut für Arzneimittel und Medizinprodukte, or the Federal Institute for Drugs and Medical Devices), the United Kingdom's MHRA (Medicines and Healthcare products Regulatory Agency), and Swissmedic (Swiss Agency for Therapeutic Products).

The group seeks to foster collaboration between patient organizations, academic institutions, regulatory bodies, ethics committees, and industry. It intends to address the lack of societal awareness of the complexity of new drug development as a key factor in patients' suspicion of, and resistance to, becoming involved in the development of new treatments, and "to harness previously ad hoc educational activities in a coherent, strategic, quality-oriented, and sustainable way."

Multi-media material

To improve the availability of patient-centric information as well as educated patient experts, EUPATI plans to develop scientifically reliable, objective, comprehensive information on therapeutic innovation by establishing certificate training courses to create "expert advocates" on therapeutic innovation, and developing a "tool kit" of educational multi-media material to be re-used by patient organizations for educational purposes. Its Internet-based library will contain up-to-date, unbiased information on medicinal development for patients and the public.

To find out more, go to patientsacademy.eu or contact Jan Geissler at jan@patientsacademy.eu

—Philip Ward