#EAPM: Personalised medicine conference to cover governance, guidelines and more

Coming up very soon is the fifth annual presidency conference organized by the European Alliance for Personalised Medicine (EAPM), writes EAPM Executive Director Denis Horgan.

Registration is now open, here.

The EAPM event, entitled Innovation and Screening in Lung Cancer - The Future, will take place in the prestigious Bibliothèque Solvay, close to the European Parliament in Brussels, from 27-28 March, during the Maltese Presidency of the European Union.

As some readers may know, the venue lies in the heart of Leopold Park, in the middle of Brussels’ European quarter. Behind its sober and classical façade, the eclectic library conceals a decor of precious wood, mosaics and stained-glass windows. It is the ideal venue.

The conference follows in the wake of four successful previous events, beginning in Spring 2013 with a congress in Dublin, one year after EAPM’s formation in March 2012.

The Brussels-based Alliance brings together European healthcare experts and patient advocates involved with major chronic diseases. The aim is to improve patient care by accelerating the development, delivery and uptake of personalised medicine and diagnostics, through consensus.

The mix of its members provides extensive scientific, clinical, caring and training expertise in personalised medicine and diagnostics, across patient groups, academia, health professionals and industry. Relevant departments of the Commission have observer status, as does the EMA.

Personalised medicine tends to focus a great deal on targeted treatment but, in general, prevention is obviously better than cure. Therefore, Alliance stakeholders aim towards, not just the delivery of the right treatment for the right patient at the right time, but also on the right preventative measures to ensure reliable and sustainable healthcare.

Currently, certainly in Europe, not only are patients failing to receive the best care, there is potential to cause them preventable harm.

It is clear that investment is required in diagnostic approaches, such as the use of IVDs and more screening, certainly in lung cancer.

While this EAPM conference will take a close look at lung cancer screening, as suggested by its title, its general subject matter will be much, much broader than that.

The Alliance is of the view that preventative measures need to be boosted across Europe, whether through better information for patients, bigger screening programmes and improved diagnostic tools that are available to all citizens regardless of where they live and their financial status.

With this in mind, experts from all stakeholder groups in health care will be examining the need for more recommendations and guidelines on health, better governance, and preventative measures across the current 28 member states, affecting some 500 million EU citizens.

In that respect, the conference will focus on a broad range of issues and diseases, albeit with lung cancer at the centre (as it is the biggest killer of all cancers).

Key to the conference will be the issues surrounding how health care is governed in the EU and what influence, in effect, Brussels can and does have, bearing in mind that much of the areas of health come under Member State competence (although Europe has stepped up of late in areas such as clinical trials and IVDs).

The Alliance’s Working Groups cover many health areas, and it has now turned a great deal of its attention to the need for more guidelines. Generally, Europe is looking at risk prediction models but several aspects need to be carefully looked at, and these include, as mentioned, governance, organization, cost/benefit evaluation and creating and running effective programmes.

When it comes to general health governance it is clear that national structures need to be in place. These would benefit from EU-wide guidelines, political commitment, and a structure that provides for evidence-based decision making (the latter in a fully transparent manner).

EU health-care governance can be divided in general into two paradigms - these are top-down regulatory frameworks and/or bottom-up frameworks.

Stakeholders will remember the nightmare that was the general data protection regulation (GDPR) which saw more than 4,000 amendments, as well as the clinical trials regulation, which took more than a decade to revise.

This conference will therefore seek to discuss how the issue of bottom-up regulation frameworks may have more traction in these modern times and in changing areas of health care.

Arguably, today, guidelines (on screening and more) may well be the way forward, given that they potentially have less rigidity and therefore more flexibility (within strict standards of safety and ethics, of course). We can clearly see that innovation has brought about a greater need for adaptation through appropriate frameworks that must be designed by experts, in consensus - albeit with plenty of necessary input from regulatory bodies.

It is vital to ensure that any and all agreed standards can be met down the line. These include the aforementioned ethical considerations, patient safety, certainty within timeframes and facilitation of advancements for the benefit of Europe’s patients and our society in general.

Once again, while lung cancer screening will receive a high profile at this fifth annual conference, the main thrust of the meeting will not be about just one disease, but more the issues surrounding governance (whether EU-wide, national or regional), discussed by experts and all stakeholder groups, in the fast-changing world of modern medicine.

This is particularly apposite within the issues of the day in modern medicine. Stakeholders, lawmakers and policymakers need to recognise the differences in access and more across the 28 member states and, therefore, across the ageing EU population of 500 million.

Of course, while calling for EU-wide standards and guidelines, EAPM is aware that there is a huge variation in resources between wealthy and less-wealthy members of the EU-28. This discrepancy must be taken into account when formulating any consensus-based guidelines and recommendations.

There is much to be decided, then implemented, and this conference aims to work towards consensus-based models that can work now and long into the future.

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