EUPATI as we move forward – the view of the EPF President
EUPATI as an EPF programme is approaching the end of its first year, and as we begin to evaluate the achievements – and challenges – of this new environment, it is timely to share my perspective on where we have come from- and to where we might move forward together.
EPF and our membership are immensely proud of EUPATI. Its strengths lie in its quality, its inclusiveness, its reach and its timeliness. As EUPATI matures, so too does the entire R&D landscape regarding the imperative for patient education and involvement – not simply as a ‘nice thing to do’ but as a key strategic impulse for all involved in the life cycle of medicines to ensure better, more effective therapies. EPF welcomes the energy and the commitment of the EUPATI national platforms, rich in their diversity, all at different stages of development, and all united by the EUPATI vision. In concert, we have the expertise, leadership and passion that the EUPATI Alumni represent, and new talent on the horizon with the next EUPATI expert course.
Let’s look back, for a moment, to the early, quite fragile years of EUPATI, to 2011 when EPF brought together the Public Consortium, several members of which were hardly known to each other, to submit a proposal.
EPF had worked hard previously with Innovative Medicines Initiative (IMI) and the European Federation of Pharmaceutical Industries and Associations (EFPIA) to encourage more meaningful involvement of patients in IMI, notably with a presentation to the IMI scientific committee in June 2010.
Presentation: IMI presentationfin
A new IMI call topic on patient education was a real break-through – and EPF, and our members, joined forces with other leading patient organisations, together with academic organisations with a track record in patient involvement, and NGOs focussing on good ethical practice. Those early days were challenging- building trust and confidence across the public partners and with the regulatory community, and establishing a strong Public Private Partnership to craft a full project proposal. Our project was unprecedented and very ambitious, and we met with considerable scepticism along the way, as to whether we could pull it off – produce comprehensive ‘state of the art’, objective, educational materials in multiple languages to enable patients to really have a voice in medicines R&D. Thanks to the leadership and hard work of many, and many of you, we exceeded our goals. And slowly, EUPATI became a game-changer in patient education in medicines R&D.
But our next challenge – as the project evolved, and demand and expectations increased – was sustainability. How could we ensure that the fruits of EUPATI be harvested, and new seeds sown?
This was a huge preoccupation for the EUPATI team and EPF Board during the last couple of years of the project. It became clear that the usual avenues of funding would not be available to an already established project. We decided then, jointly, to integrate EUPATI as an EPF programme, and secured private and public in-kind support to run the current operation, whilst creating a dedicated team tasked with ensuring the long-term sustainability of EUPATI.
We continue to face many challenges together. Despite the clear willingness and good intent, tokenism and fragmentation still pervade at every stage of the process. There remain hurdles in recognising patients and their representatives for our expertise, experience and knowledge.
The uncertainty of the wider environment– Brexit, how health is prioritised, or not, as a pre-requisite for a social and economic Union, and not least, serious questions about the European Union as a viable construct in the future– is also detrimental to what we are striving to achieve in this space. The European Patients’ Movement is a force for good amidst such complexity and doubt.
EPF, as a pan European, cross disease umbrella organisation has a brief and a mission that is wider than patient education in medicines R&D. Our advocacy goal is to ensure that health policy in Europe is patient-centred and equitable, framed around the two key pillars of patient empowerment and patient access. We played a key role, for instance, in recent EU legislation linked to clinical trials and medical devices. The nexus between EU health policy advance, patient education and empowerment is critical.
We live in a Europe where there are deep-seated health inequalities, where access to the most basic of care is not a given in some places, and where access to innovative medicines is simply a pipe dream. I believe that EUPATI as an EPF programme must be set in the context of wider policy debate. And the role of EPF national coalitions, together with EUPATI national platforms, in which many are partners, is to help shape a national agenda whereby genuine involvement of patients in medicines and in health policy design and delivery becomes the norm.
We are working on a full project proposal in response to an Innovative Medicines Initiative (IMI) call text of patient engagement in the life cycle of medicines. If successful, this will be a unique long-term opportunity to marry patient education through EUPATI, and patient engagement seamlessly, and create an enabling single ecosystem with patients at the forefront.
And our work continues with IMI to ensure the patients’ voice in the governance and strategic orientation of IMI to ‘mainstream’ patient education and patient engagement in all relevant projects. An IMI stakeholder meeting will take place in October to crystalise this further. Important discussions are also taking place with the European Medicines Agency (EMA) to optimise EUPATI’s relevance in its pioneering work on patient engagement.
The global dimension is also critical. EPF is working closely with the Patient Focused Medicines Development initiative (PFMD), which we helped to found, looking at patient engagement from a global perspective, and how to enable this in other regions. There are clearly many opportunities for EUPATI’s global reach and we are delighted that discussions are already underway in the U.S, Latin America and Japan. IAPO, the International Association of Patient Organization is also looking at EUPATI with its membership.
In 2012, EPF set up a capacity building programme aiming to strengthen patient organisations at all levels, through organisational development and skills building. The focus to date has been Central and Eastern Europe, and I see many opportunities in the future to build synergies between the learning outcomes here, and those of EUPATI, as both programmes advance.
We have recently submitted our 4- year plan to the European Health Programme. In this proposal, a core objective is to create a framework for meaningful patient involvement in health systems design, strengthening and sustainability. Here, again, mutual learning and exchange with the EUPATI community will be rich.
In the next couple of years, EPF will revisit our Constitution, in the light of political developments with Brexit, internal developments regarding our growing youth group, and our need to work more effectively with EEA and neighbourhood countries. In this process, I am very keen to explore how we embed EUPATI in the Constitution, as an integral part of our DNA as an organisation. There are many ways of approaching this. I am looking forward to good discussions and debate on ensuring a way forward whereby patient education and engagement in the life cycle of medicines continues to flourish and grow and be core to the body politic of EPF as we strive towards better health for patients in Europe.