New Partners, Greater Impact – Excellence in Research with Patient Engagement

After decades of scientific efforts, the search for successful treatments of many cancers and most metastatic disease, Alzheimer's and other incapacitating and/or deadly conditions sometimes seems to have hit a wall. The time has come to include a new perspective into the equation: the patient perspective, a unique insight that may help bring those walls tumbling down.

Why? No one knows better what it means to experience a disease than those who live with it, and a true multidisciplinary approach to tackle disease must not only have patients at its center but also partner with them across the research process, from basic science to clinical studies. The challenge now is for both patients and researchers to team up for greater impact.

In Europe, policy-makers are already investing in creating an environment where these partnerships can thrive. The Trio Presidency of the Council of the European Union, which sets the political agenda, has co-signed the Declaration on effective cancer research “Europe: Unite against Cancer”, which explicitly commits to support patient engagement in cancer research (see below).

This joint national and international online forum, that will take place on June 23rd, will look at how partnerships between patients and scientists can help ask better questions, improve research designs and increase the translation of research findings into the clinic. This original online forum, driven by both patient organisations and academic research institutes, is the first of a series of events that mark the beginning of a new era in medical research.

Session 1 (in Portuguese - 09:00-10:30 am, PT/UK  |  10:00-11:30 am, CET)

A first focus on the situation in Portugal will bring together patient representatives and scientists, among other healthcare stakeholders, to identify good practices and challenges for more effective research. A roundtable of people leading successful partnerships will illustrate and discuss how patients have been involved in research, contributing an essential perspective for increased impact of scientific results.

Session 2 (in English - 11:00am-12:30pm, PT/UK  |  12:30-1:30pm, CET)

Experience-based insights will be presented by pioneers Jan Geissler, chair of the Workgroup of European Cancer Patient Advocacy Networks (WECAN), and Bettina Ryll, founder of Melanoma Patient Network Europe (MPNE) and member of the Horizon Europe Cancer Mission Board. Also during this session, a roadmap for patient participation in research in Europe will also be discussed, with the presence of participants and officials from Germany, Portugal and Slovenia, the countries that currently compose the Trio Presidency of the Council of the EU. This Global session will be closed by Prof. Dr. Manuel Heitor, the Portuguese Minister of Science, Technology and Higher Education. The event is a partnership between Portuguese Patient organisations and networks such as the European Patients’ Academy on Therapeutic Innovation (EUPATI), Plataforma Saúde em Diálogo, EVITA Cancro, the Portuguese Multiple Sclerosis Society, with the Portuguese National School of Public Health and the Champalimaud Foundation/UM Cure 2020 European Consortium.

The initiative is also a response to the challenge made by patient advocates from the Melanoma Patient Network Europe and the Workgroup of European Cancer Patient Advocacy Networks (WECAN) in the context of recent advances in Europe, and aims to promote a joint and constructive reflection on the different opportunities for the involvement of patients in research.

The programme can be found here. To confirm your presence, we kindly ask you to fill this form. 

More about:

The Trio Presidency of the Council of the European Union, Patient Participation and the Europe: Unite against Cancer Declaration

Patient engagement in cancer research is one of the primary objectives of the Trio Council Presidency shared by Germany, Portugal and Slovenia, which are leading the presidency of the European Union from June 2020 to December 2021. On 13 October 2020, the three countries signed the Europe: Unite against Cancer declaration to join approaches on strengthening cancer research in Europe and to ensure that patient engagement becomes standard throughout it. 

German National Decade against Cancer

The National Decade against Cancer brings together numerous key players to work on ensuring effective cancer research, in which patients are closely involved and which offers them increasingly improved prospects. Launched by the German Federal Ministry of Education and Research (BMBF) and scheduled to run for ten years, the alliance aims to mobilize people in Germany to address the topic of cancer research. At the same time, it is also designed to reinforce support for research itself. Innovations should receive more targeted support and be made available to patients faster. By joining forces, it is hoped that there will be fewer new cases, cancer will be diagnosed more quickly and that better treatments will be developed. 

EUPATI Portugal

One of the goals of this association is to promote the study and debate of patient participation in research and clinical development. Its area of activity includes the promotion, at the Portuguese level, of patient participation in research and health product development, namely through training patient representatives on the involvement in research development, as partners, through the capacitation of patient associations in the involvement in clinical research processes and the discussion of models including the patients’ perspective in clinical research and resulting processes. Founded in 2017, EUPATI Portugal is the Portuguese platform of EUPATI (European Patients’ Academy on Therapeutic Innovation - https://eupati.eu/). It currently has 30 associates (individual, academic, patient associations and industry) and eight patient representatives (EUPATI Fellows), trained as Patient Experts by EUPATI. In May 2018, at the Forum do Cidadão [Citizen’s Forum], EUPATI Portugal achieved the first place in the Infarmed [Portuguese Drug and Health Products Authority] ranking of patient association projects. In January 2019, it was awarded one of the “Good Practices” Infarmed 25+ Prizes, which reward people/entities who distinguished themselves as prominent examples of good practices in the areas of: Clinical Trials; Drugs and Health Products; Pharmacovigilance, Portuguese Pharmaceutical Industry; Patient Associations; and Competition Practices and Projects. In November 2020, two EUPATI Fellows, Elsa Mateus (president of the Direction) and Tamara MIlagre (indivisual associate) were condecorated with the Medalha de Mérito Científico do Ministério da Ciência, Tecnologia e Ensino Superior (Medal of Scientific Merit of the Ministry of Science, Technology and Higher Education). 

Plataforma Saúde em Diálogo:

The Plataforma Saúde em Diálogo is a non-profit Portuguese Private Institution for Social Solidarity that congregates 56 patient associations, promoters an healthcare users and whose mission is to make their voice heard by political decision-makers, thus contributing to the evolution of a healthcare system increasingly centered on people, and based on fundamental principles such as equity and sustainability. In more than 20 years of existence, this institution has promoted and defended patient and healthcare users’ rights and duties, as well as those of their families/caregivers. It has participated in the elaboration of public health policies and policies that have an impact on health and developed various activities related to the capacitation and empowerment of the associations of the Plataforma’s member associations. It has also contributed to the promotion of health literacy of patients and the community at large.

EVITA - Hereditary Cancer:

EVITA is a non-profit association and its mission is to save lives and improve the quality of life of individuals and families affected by hereditary cancer:

- Raise society's awareness of the risk of hereditary cancer;

- Clarify so that everyone can assess their risk of cancer due to genetic predisposition, family history or other factors;

- Provide meetings and mutual help;

- Provide information to help people deal with risk factors;

- Support individuals in their informed decisions;

- To be an active voice among the established powers, the medical and scientific communities, the media, similar associations and the general public.

Portuguese Society for Multiple Sclerosis (SPEM)

Created in 1984, its mission is to contribute to improving the living conditions of patients with Multiple Sclerosis, their families and caregivers. It intervenes with public authorities and competent bodies, especially in the areas of health and social protection, for efficient support to patients and access to therapies; provides integrated and multidisciplinary support, through specialised responses in social intervention and rehabilitation, and promotes information, awareness and empowerment of patients, families, caregivers and civil society in regard to the disease and its impact. The Society is present from North to South of the country, reaching more and more people affected by Multiple Sclerosis. At an international level, it ensures the representation of Portugal in the European Platform of EM (EMSP) and in the International Federation of EM (MSIF). SPEM is a Private Institution of Social Solidarity (IPSS) recognised as a Non-Governmental Organisation for People with Disabilities (NGOPD), Association for the Defense of Health Users (ADHS) and promoter of protocols and partnerships between patient associations for the efficient sharing of resources physical, human and financial support for the target citizens of the respective activities.

Escola Nacional de Saúde Pública (ENSP-NOVA):

For 25 years in the NOVA University of Lisbon and with more than 50 years of history, the National School of Public Health (ENSP-NOVA) is a reference institution in post-graduate teaching, research and the creation of value for the society in the area of public health, three of its mission’s pillars. It develops highly competitive and innovative scientific research via Public Health Research Centre (CISP), focused on the creation of knowledge that can be placed in service of the improvement of the health of populations. Currently, the school also integrates the Comprehensive Health Research Centre (CHRC), the new research centre in the clinical, public health and health services areas, recently appraised as Excellent by the Foundation for Science and Technology.

Fundação Champalimaud:

The Champalimaud Foundation carries out research in cutting-edge fields and strives to stimulate discoveries that benefit people, and to promote new standards of knowledge. It is at the Champalimaud Centre for the Unknown, in Lisbon, that the Foundation develops its activity in the areas of neuroscience and cancer. This is done through both research programmes and the provision of clinical services of excellence. It also has an outreach programme to fight blindness. To pursue its objectives in achieving significant scientific advances, the Champalimaud Foundation adopts a translational methodology, which establishes a direct link and interdependency between basic research and clinical activity. This s a fundamental part of the Foundation’s methodology. Ultimately, the Champalimaud Foundation aims to promote the health and well-being of humankind by seeking to actively participate in the search for solutions that can alleviate the burden of disease on societies and individuals.

UM Cure 2020:

The UM Cure 2020 European project is a consortium of 12 partners that combines the efforts of several European Centres of Excellence in clinical ocular oncology and basic research with patient organisations to develop new therapeutic approaches to treat metastatic Uveal Melanoma, a rare disease, and share this new knowledge efficiently. The UM Cure 2020 has the duration of 60 months and received 6M€ funding from the European Union’s Horizon 2020 Research and Innovation Programme under grant agreement No. 667787. A patient organization, Melanoma Patient Network Europe, with local partners across the continent, is a full partner on the consortium project, contributing to all stages of the research process.