Strenghtening Patients’ Involvement in Medicines Development

In March 2021, The European Patients’ Academy on Therapeutic Innovation (EUPATI) and the European Liver Patients’ Association (ELPA) signed an agreement that marks the beginning of a long and fruitful collaboration between the two organisations.

Who’s who?

The European Patients’ Academy on Therapeutic Innovation (EUPATI) 

EUPATI is a multi -stakeholder public – private partnership with a mission to empower patient engagement through education. Since its inception as an IMI-project in 2012 and  as an established Foundation today, EUPATI provides education and training for patients in medicines R&D. It aims to increase the capacity and capability of patients and the lay public to be effective advocates and advisors e.g. in clinical trials, with regulatory authorities and in ethics committees.

To date EUPATI’s vision has enabled:

  • 200+ patient experts trained in the Patient Expert Training Programme graduating to become EUPATI Fellows
  • 4 million+ EUPATI Toolbox users accessing articles, webinars and key definitions of the A-Z of medicines R&D in 13 languages
  • 250+ professionals have enrolled in EUPATI’s training courses on patient engagement
  • 23 EUPATI National Platforms are operating on a local level throughout Europe and globally
  • 30 partners are now supporting EUPATI as it continues to bring together patient organisations, academia, not-for-profit organisations and pharmaceutical companies. It also has important links to regulators and HTA bodies.

The newly launched EUPATI Open Classroom provides access to the Patient Expert Training Programme, now available to an unlimited number of people, accessible anywhere in the world. Due to the demand and success of the original course, EUPATI decided to revise the training programme and adapt it to an online, on-demand, flexible and personalized format.

The European Liver Patients’ Association (ELPA)

ELPA emerged from a desire amongst European liver patient groups to share their experiences on the often very different approaches adopted in different countries. Today, after 16 years, ELPA proudly represents 31 members from 25 different countries in Europe and beyond.

ELPA’s vision is that all liver patients are diagnosed in time, are treated with respect, and have equal access to the best standard of medical care – regardless of origin, lifestyle, and type of liver disease.

Its ultimate goal is a world without liver diseases. In particular, to achieve this important target, ELPA’s future efforts are focused on 3 main pillars.

The first one is the domain related to the MEMBER EMPOWERMENT

ELPA was established by patients, is governed by patients, and represents patients. Liver patients and their family members are committed to making a difference in prevention, treatment, and care for other patients.

The second one is ELPA POLICY AND ADVOCACY activity

As one voice, ELPA works to promote the development and implementation of policies, strategies, and healthcare services that empower patients to be involved in decision-making. Besides, ELPA strives to enhance patients’ capability to play an active role in all aspects of their treatment and care and ensure that ELPA’s participation increases at every health-debated issue.

The third one is the PARTICIPATION IN SCIENTIFIC PROJECTS

Despite patients’ associations’ participation in scientific projects is a relatively new concept, being part of them enriches the research field with patients’ organizations’ unique views. Also, ELPA, with its only way of communicating and disseminating scientific results, acts like a translator making complex contents accessible to a broader public.

Why a partnership?

From a patient organization’s perspective, this is an excellent opportunity to be involved in EUPATI’s activities, following this project’s implementation very closely. However, the most crucial aspect resides in having the possibility to co-create and co-design content and resources and access discussions and debates on medicines R&D issues, especially regarding ELPA’s disease areas. Also, being a multi-stakeholder public-private partnership, EUPATI offers ELPA the option to enlarge its contacts network at many levels and to facilitate its members’ engagement and connections through education.

For EUPATI, the opportunity to work with ELPA allows for a specific focus on patient representation and collaborating together in a shared goal of patient empowerment and patients’ key role in decision-making. EUPATI sees that organisations like ELPA are key actors in making patient engagement the ‘new norm’ in the development of new medicines and treatments.

The EUPATI National Platforms

EUPATI has established National Platforms in 23 countries across Europe and worldwide. EUPATI National Platforms (ENPs) bring patients, academic and industry partners together to discuss and create opportunities for more patient involvement and patient education through their activities in their local country.

Each ENP has patient, academics and industry representatives in their National Platform. Together they raise awareness and inspire momentum on patient empowerment, identify challenges and organise opportunities for joint action.

On a more practical level, ENPs help disseminate the existing training and education material which EUPATI develops into the community in their country. Membership of the EUPATI National Platform is open to all and the structure and governance of each ENP vary from country to country. If you are interested in joining your local ENP, setting up an ENP or indeed learning more about ENPs, visit our website here.

Some words from EUPATI and ELPA

“As a patient-led multi-stakeholder initiative, it is essential for us at EUPATI to have a strong representation of patient organisations. ELPA will add an important patient voice to our partnership and facilitate the access of more patients to education & training in medicines R&D. We are delighted to launch this new collaboration!”

Maria Dutarte, EUPATI Executive Director

“For ELPA collaborating with EUPATI means enabling our members to have access to high-standard education tools. Training and education are for them a way of empowerment in the field of advocacy but also a clear opportunity to be better involved in medicines R&D, regulatory deliberations, clinical research and technical innovation. It is the best way to fully fulfill the motto ‘nothing about patients without patients'”.

Marko Korenjak, ELPA President

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