EUPATI will increase the capacity of well-informed patients and patient advocates to be more effective as advisors in medicines research & development. Our most intensive capacity building activity will be the certificate training course for 100 "patient experts". After multi-stakeholder discussions and an extensive consultation period with advisors, EUPATI has now published its first version of the Certificate Course agenda.
About the Agenda for our Training Courses
The European Patients' Academy (EUPATI) is a consortium of 30 organisations that is patient-led and patient-focused and aims to:
- Develop and disseminate objective, credible, correct and up-to-date public knowledge about medicines and research and development.
- Build competencies and expert capacity among patients and the public.
- Facilitate patient involvement in research and development to support industry, academia, authorities and ethics committees.
EUPATI will increase the capacity of patients to be effective advocates and advisors, eg, in clinical trials, with regulatory authorities and in ethics committees.
Three audience types have been determined and different tools will be developed for them:
- Audience 1 consists of training 100 patient experts via an 18-month university-style certificate training programme on medicines R&D, blending face-to-face and online learning in six modules.
- Audience 2 consists of providing information to 12,000 patient advocates with a combination of paper-based and online tools via the creation of an educational toolbox available online.
- Audience 3 consists of providing information to 100,000 individuals via various means including online media, films (and/or cartoon!), leaflets and the creation of an internet library.
The first version of the agenda of the to-be-developed certificate training programme has now been agreed to and published (download here- only after free registration and log in). Development of the course material will start in summer 2013 and courses are expected to start mid-2014.
EUPATI Agenda - About the development process
The first draft of the Patient's Academy Agenda is an example of successful collaboration in a multi-stakeholder, multicultural team. Our Consortium has the advantage of having access to a diverse group and being able to incorporate many perspectives in order to achieve a widely accepted result. To achieve full transparency, we will mention our process on how the Agenda as it stands today was arrived at, incorporating all stakeholders' viewpoints including patients' needs, expertise from clinical developers/advisers/teachers as well as insights from focus groups, at different stages of the process.
- The Agenda (or Syllabus) is a key aspect of the EUPATI project, as it defines which subjects are considered important for EUPATI's "audience 1" (patient experts) to become familiar with to varying degrees.
- As several of the members of the EUPATI Consortium are also involved in the IMI-funded "sister" project PharmaTrain and the subject matter overlaps (although not for the same audience), it was considered that PharmaTrain was a good starting point. The PharmaTrain syllabus was analysed, and a first proposal was made by the Content Development Working Group (WP4). At this point no patients' organisations had yet been consulted.
- This first proposal was then reviewed by the leaders of the six "Content Development Task Forces" of WP4 (Please note each WP4 Task Force has two co-leaders - one from a Patients' Organisation and one from industry/academia).
- A second proposal was made by EURORDIS in order to align more with patients' needs regarding the subjects. The Agenda was rearranged to be based on the WP4 Task Force structure.
- A third proposal was made that merged both proposals 1 and 2. This is the current Agenda in use. This Agenda aimed to consider both the experience of PharmaTrain and that of the Patient Organisations in training patient advocates.
- All WP4 Task Force leaders including patient organisations (EURORDIS and EGAN) reviewed the Agenda and refined it to include more patient-focused topics.
- This version of the Agenda was sent to the EUPATI Executive Committee and Project Advisory Board for review.
- Concurrently focus groups were being held by the "Needs Assessment and GAP Analysis working group" (WP3) with patient advocates, in order to obtain input on course content and format and any other aspects related to EUPATI and the teaching.
- Learning objectives were determined by task force leaders with a watchful eye by the WP4 Task Force responsible for the patient roles and responsibilities (led by EGAN) to ensure that patient-focused topics and learning objectives were included. The learning outcomes indicate what participants will learn by completing the lessons.
- The Agenda was again shared with our full Consortium and the three EUPATI Advisory Boards for comments and feedback.
- The EUPATI Executive Committee, Project Advisory Board and Regulatory Advisory Panel have provided in-depth feedback on the agenda/syllabus and learning outcomes, and comments/suggestions have been taken into consideration.
- Module structure and Agenda topics have now been published on EUPATI website. This Agenda will also be used as the basis for content development of the training courses in Summer 2013.
- Learning objectives and teaching methodology both for the face2face courses and the e-Learning sessions are currently under review, taking into account feedback we received from all stakeholders. The learning outcomes will published on the EUPATI website in August 2013.
- The Agenda will of course evolve further while content is being developed, with more input and experience coming in from the content development teams, EUPATI Network Members and advisers. The Agenda will again be reviewed by the WP4 management team in early 2014.