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European Patients Academy

What is EUPATI?

 

The European Patients’ Academy (EUPATI) is a pan-European Innovative Medicines Initiative (http://www.imi.europa.eu/) project of 33 organizations, led by the European Patients’ Forum, with partners from patient organizations (the European Genetic Alliance, the European AIDS Treatment Group, and EURORDIS), universities and not-for-profit organisations, along with a number of European pharmaceutical companies.

We focus on education and training to increase the capacity and capability of patients to understand and contribute to medicines research and development and also improve the availability of objective, reliable, patient-friendly information for the public.

We launched the Patient Expert Training Course in October 2014 in English and we are launching a web-based educational toolbox, hosting educational material in English, Italian, Spanish, Polish, German, French and Russian from January 2016, aiming to reach patient advocates across Europe.

To find out more about the project, our aims, and achievements, please visit http://www.patientsacademy.eu.

*We do not educate about disease-specific issues or therapies, but about the process of medicines development in general. Indication-specific information or specific medicine interventions are beyond the scope of European Patients’ Academy and are the remit of health professionals as well as patient organisations.

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Meet EUPATI UK

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Irene Oldfather

ENP Patient representative

Chair of Alliance-Scotland

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Prof. Sue Pavitt

ENP Academic representative

Faculty of Medicines, University of Leeds

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Suzanne Parsons

ENP Academic representative

Public Programmes Team, University of Manchester

kay-warner

Kay Warner

ENP Industry representative

Focus on the Patient Director, GSK

Patient representatives

Academic representatives

  • Prof Sue Pavitt: Professor in Applied Health & Translational Research, School of Dentistry, Faculty of Medicine & Health, University of Leeds
  • Suzanne Parsons: Public Programmes Team, Nowgen, Manchester Academic Health Sciences Centre, Central Manchester University Hospitals NHS Foundation Trust and The University of Manchester, www.nowgen.org.uk

Industry representative

  • Kay Warner: Project Manager, GlaxoSmithKline, www.gsk.com

EUPATI UK - the story

In 2013, the Health and Social Care Alliance Scotland (the ALLIANCE), the University of Leeds, the Central Manchester University Hospitals NHS Foundation Trust (CMFT), and GSK started to grow a network of public-private partners interested in patient education and patient involvement in the UK.

In 2014, with broad support secured from a number of patient, academic and industry representatives, a first event was held in Leeds to inaugurate ‘EUPATI UK’. Attended by over 60 national partners, most expressed a willingness to help identify the challenges and opportunities for future patient education and patient involvement in the UK.

Over 130 patients from the UK applied to join the 14-month EUPATI Patient Expert Training Course. In total, 20 were accepted and now become ‘EUPATI Fellows’. In August 2015, EUPATI UK organized a one-day workshop for course participants to share experiences and to explore how to move from the theory of patient involvement to the practice! National partners interested in contacting EUPATI Fellows from the UK should visit our contact page.

EUPATI UK has close cooperation with the National Institute for Health Research (NIHR) – the Chair of INVOLVE spoke about the importance of genuine patient involvement at the EUPATI Regional Conference in Dublin in April 2015; and in November of the same year, EUPATI UK presented its contribution towards patient education at the Annual INVOLVE Conference in Birmingham.

In 2016, EUPATI UK presented at the Alliance-Scotland Conference in May, and in June, we organised a joint event with the Association of British Pharmaceutical Industries (ABPI). For more information please visit our news section.

EUPATI UK - the future

EUPATI UK intends for the dialogue around patient education and patient involvement to continue long after the formal end of the project in 2017, and patient, academic and industry members have already committed to continue to come together on a regular basis to discuss how to advance the role of patients across medicines research and development.

EUPATI UK membership is not confined to patients, academic and industry, and as we cement our partnership, we will bring others into the fold, including government officials, regulatory bodies, health technology assessment agencies, associations of doctors and nurses, medical journalists, and many more.<

In 2017, we will seek to strengthen our links to the 20 UK EUPATI Fellows who will graduate from the EUPATI Patient Expert Training Course in December 2016. We will work with them to identify how they can impart their knowledge to other interested patients and to identify what opportunities exist for them to get actively involved in research and development in the UK, be it with regulatory authorities, ethics committees, clinical researchers or industry programmes.

In 2017, we will also continue cooperation with research and industry, and we will host joint events with key national partners in these sectors to explore how to increase the number of involvement initiatives and how to effectively encourage and replicate good practice.

Become a member of EUPATI UK!

Receive invitations to EUPATI UK events; learn about free patient education tools; and make new connections with patient involvement partners.