EUPATI Builds on Patient Education Efforts


In addition to the patient education database, guidelines for the interaction of patient organizations with ethics, health technology assessment, regulatory bodies and industry are being developed with the goal of being released later in the year.

Following the success of its Patient Expert Training Course, the European Patients’ Academy (EUPATI) has announced the launch of its second core product: the Internet Toolbox on Medicines R&D.

"The new knowledge base at comprises of a wide range of content covered by the organization’s course in seven languages, including 3,000 articles, images, presentations, fact sheets and interface strings with a volume of around 1 million words in 100 topic areas. A total of 40 external volunteer translation reviewers have double-checked everything before it gets published, according to EUPATI Director Jan Geissler."

In September 2015, the platform was made available in a password-protected "soft launch" to selected national members and advisers. A functional test, experience test and accessibility test was carried out: 83% agreed or strongly agreed that the website is easy to use, 75% that they are able to find what they need quickly, and 91% that they would recommend it to a friend.

EUPATI now has eight national networks (U.K., Ireland, Spain, Italy, Austria, France, Malta, and Luxembourg), with three further launches expected in early 2016 (Germany, Switzerland, Poland).  These groups have are preparing various activities, including webinars, information days, training sessions, and social media campaigns. Other networks are planned in Denmark, Greece, Portugal, and Slovakia.

“Patient preferences, quality of life, patients' unmet needs are often not reflected when research and trials are designed without patient input, leading to delayed research and generation of meaningful data, to trials that don't recruit and that patients don't accept,” noted Geissler. “It is difficult to do risk/benefit assessments without asking patients, as doctors' and patients' perceptions so often differ very significantly. Hence, it is of key importance to involve patients all across the development lifecycle, and especially in early phases when research priorities are set and research/trials are designed e.g. when protocols are written, to make sure that research truly meets patients' needs and expectations.”

Clinicians must involve patients at an early stage to make sure the trials are designed around patients’ needs, risks emerging from new data are assessed with patient input, and trial results are communicated to participants and spread within the community, he added.
EUPATI’s first course began in October 2014, and 46 trainees completed it successfully in January 2016. Only two drop-outs were reported. The second 14-month course started in October 2015 with 60 trainees from 33 countries and 28 disease areas.  For further details about the participants in the training program, click here.

Finally, guidelines for the interaction of patient organizations with ethics, health technology assessment, regulatory bodies and industry are being developed. The consultation process started in December and will run until February 2016. The completed guidelines will be released later in the year.

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