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'At the crossroads of healthcare' – our contribution to the DIA EUROPE 2018 Annual Meeting

DIA Europe celebrated its 30th anniversary this year. ‘At the crossroads of healthcare’ was the broad theme of their annual meeting taking place in Basel on 17-19 April. The meeting convened over 2000 representatives from the payer, regulator, HTA, industry and patient communities. EPF was also there, represented by Mathieu Boudes, Matthew May and Nicola Bedlington.

Our commitment to patient engagement

We participated to several sessions. Our Secretary General, Nicola, was a speaker in a a Signature Session led by WHO and SwissMedic that explored strengthening regulatory systems in low and middle-income countries as part of a strategy to improve access to quality medicines.

Many stakeholders (and many resources) are involved and engaged. The session discussed the work undertaken by WHO at global level, and a country example from Ghana, both homing in on knowledge sharing, capacity building and prioritisation. Nicola made a strong case for meaningful patient engagement in strengthening regulatory systems, drawing on the learnings of European Medicines Agency over the last decade or so, where patient engagement is embedded at many levels of the agency’s work.

“Patient engagement should not be seen as too complex, difficult, or a luxury in any country, but rather a critical process bringing added value,” she said.

In setting the debate in the context of the Sustainable Development Goals, she highlighted the importance of goal 3 on health and our roadmap on Achieving Universal Health Coverage.

Building synergies with other patient initiatives

The conference was also the opportunity for EPF to share good practice examples of EPF’s two flagship projects, promoting patient education and patient engagement.

On patient education, we highlighted the successful partnerships within the European Patient Academy on Therapeutic Innovation (EUPATI), a full EPF programme that is training patient advocates from all over Europe.

In patient engagement, we presented our new IMI project called PARADIGM, on co-creating a framework for patient engagement throughout the lifecycle of medicines, with tools, resources and metrics to support this process.

The synergies between initiatives in the patient engagement in the medicines development field was a topic of another session, attended by Mathieu Boudes, Project coordinator of PARADIGM. The session featured representatives from PARADIGM, the Patient Focussed Medicines Development – PFMD (of which EPF is a member), the Patient and Citizen Involvement Interest Group of HTAi and the Danish Value Based Diabetes Care Patient PRO programme. The real innovation was the refreshing discussion during the session, as the representatives of the various initiatives focused on the how they can work together to move the needle towards more patient engagement rather than just showcase their initiative.

Patient centricity

Matthew May, project coordinator of EUPATI attended a session focused on “Patient-centricity”. The session focused on data collection and use of data within the construct of patient centricity and it was highlighted that one way to work effectively in the future is to be able to identify the data which meets the needs of the patient community amongst the “Tsunami” of data that is being collected, as it is so easy to collect vast quantities of data now.

The session angle highlighted that a lot of people still only consider patient centricity with regards to treatment and not also within medicines R&D.

The patient perspective on Brexit

Another session in which we participated focussed on Brexit, during which important updates were received from the EMA leadership regarding its move to Amsterdam, its commitment to continuity and its vision beyond Brexit, moving forward, and the evolving role of Regulatory Agencies in general.

The critical work of National Competence Authorities and division of labour in the context of Brexit was also highlighted. Together with Nathalie Moll from EFPIA, Nicola was invited to give a wider stakeholder perspective on the impact on Brexit on patient safety and public health. She focussed on 5 key areas. Access and the need for full alignment between the UK and EU27 regarding the regulatory environment, and seamless trade arrangements to avoid disruption and supply challenges; Research – ensuring the EU remains a world class hub for health research, still drawing on the UK’s leadership and mature research ecosystem; Quality of care with continued reciprocal health arrangements, in particular the European Health Insurance Card for urgent and emergency care; Healthcare Professionals ‘ mutual recognition of qualifications and opportunities for shared training, continuing professional development and finally in public health- strong coordination and preparedness in the light of potential health threats , pandemics and on-going cooperation regarding the continuum of prevention.

When asked about the biggest concern patients have about Brexit, Nicola said: “There is not only one single biggest concern, there are many -and they are multi-faceted, complex and serious – safety blips, supply blips – will all have a profoundly negative, very real impact on patients’ lives. When we look back in a few years’ time, I hope we can say we have ridden this storm together and there is a sense of solidarity between the health community in the UK and EU27 – for the benefit of all patients’.”

Adapt Smart and medicines adaptive pathways to patients

Finally, Mathieu also participated as panellist in a session on Medicines Adaptive Pathways to Patients, building on knowledge coming from the IMI project ADAPT SMART, which concluded in 2017. The main discussion topic was what is next, focusing on how to better organise the follow up with true pilots with assets fulfilling the engagement criteria, under the leadership of whom (EMA, MoCCA or the European Commission?).

Even though as a project ADAPT SMART is over, its legacy is vast, in the way the discussions are shaped in Europe. Very interestingly, it was reported by an attendee, John Skerritt, Deputy Secretary, Health Products Regulation Group of the Therapeutic Goods Administration (the Australian regulatory agency) that in Australia a first product was approved after a MAPPS-like approach. We will keep watching this space for promising products addressing high unmet medical needs.