Genomics Event a huge success - Empowerment for patients and data is the way of the future in public health genomics

It’s almost Easter and EAPM this week signed off in style with a great day with a virtual event yesterday (April 5th) in the European Parliament in Brussels.  The event was organised during the French Presidency of the Council of the EU under the banner of 'Determining a path for optimal integration of  Access & Diagnostics for All & Public Health Genomics'.

A big part of the fantastic dialogue involving 190 guests, a host of MEPs, representatives of the WHO, ICG-ARGO, medical societies, payers, policy makers, industry colleagues and patients - so the great and the good supporters of personalised medicine, was the dialogue between all people there.

The virtual lunch wasn’t bad either.

EAPM’s executive director Denis Horgan told the assembled: “It’s been an amazing time for personalised medicine. And thank you to everyone here, as well as those who couldn’t be, who have contributed to a busy, tough, but extremely valuable number of years to put personalised medicine on the political agenda in terms of early diagnosis and access to innovation."

The overarching goal of the event was to answer perennial questions by working together with partners from across the healthcare system to use a complete picture of what Europe knows to drive a conversation about the healthcare systems that patients will need next and answer the question of tackling the implementation gap. 

The conference asked questions such as are wealthier countries always healthier, which countries get access to innovations first, is there a link between ratios of private health expenditure to public expenditure and health outcomes, and a link between public health spending in periods of recession and health outcomes?

Access to early diagnosis is key, here, as we have always said.

The guests heard that other questions include what is the correlation between countries with a universal health system and health outcomes, is there a link between the quality of monitoring of population health needs and overall system performance, what is the correlation between disparities in health across the population and overall health outcomes.  What is the inter-relation of genomics and guidelines?

One extremely important question (although they all are important) is what is the link between numbers accessing screening programmes as well as molecular diagnostics and survival rates? 

There is already data out there to answer many of these questions, which is EAPM has been tracking key indicators through time in cancer – keeping track of remaining gaps and emerging best practices among European healthcare systems as well as more broadly.

As mentioned in a previous update, presently EAPM is organising various expert panels in an ongoing project linked to various cancer sites and how can the EU beating cancer plan as well the EU health Data Space be best implemented to ensure that patients can get diagnosed earlier.   More on that in further updates.

Sustainability and early diagnosis

As the conference heard, there’s more than one way to look at the sustainability of healthcare systems. The meeting examined what key conclusions can be drawn from existing data and what data is needed in the future to develop evidence-based and outcome-oriented healthcare systems.

Representatives from the patient organisations and medical community highlighted that sustainability is a broad issue, and one key challenge for healthcare systems is to ensure early diagnosis and manage medicines spending - while also delivering on innovation. Europe needs to ensure rational use of resources.

Part of this process is that where it is possible to treat a patient to target an older cheaper medicine, it should be done. But if a patient needs a more modern treatment, access should be provided at reasonable prices that reflect both the added value and the volume across the market - with low volume treatments, naturally commanding a higher price. 

Getting this balance right, ensures that everyone wins.   

Molecular diagnostics is key here.

Existing evidence shows clearly that countries actively managing rational use have lower spending growth for medicines as a whole with better adoption of molecular diagnostics - and therefore more potential ‘headroom for innovation’. 

Integrating innovation

Other key strategic areas looked at during the conference was the member states challenges from the regulatory, economic, cultural, responsible research and innovation, and gender perspectives

However, continuous technical dialogue needs to ensure that EU and Member State policymakers receive the best possible information and advice, thereby minimising barriers to the uptake of personalised medicine at the political level in the upcoming revision of the EU pharmaceutical legislation.  

A neutral multi-stakeholder framework is key here which EAPM provides.

The conference heard that there is clearly an urgent need, which was exacerbated during COVID-19, to start restructuring care delivery, fuelled by factors such as chronic diseases, Europe’s ageing population and health workforce shortages.   

To tackle the challenges, new care models are needed and their implementation requires essential investments and related strategies.   Better uptake of molecular diagnostics and the use of date is key here. 

The conference heard that the involvement of a broad range of public and private partners and investors is required, with a combination of bottom-up and top-down approaches to realise these necessary new care models.

When it comes to implementation of these, two underlying principles are, as ever, collaboration and partnerships. 

The conference heard that it is necessary to make policymakers and payers realise that investing now in these advanced therapies and technologies, as well as in adequate regulatory and payer decision making frameworks, will be a key pre-requisite to see the long-term, cost-effective patient outcome benefits and more efficient healthcare systems materialise.

As ever, the proposed solutions range from better coordination and collaboration models between stakeholders and decision makers at various stages within the bench-to-bedside timeframe to more sophisticated pricing, reimbursement and funding mechanisms as well as effective forms of utilisation management to address the inherent complexity of personalised medicine.

Innovation and the incentives for it are vital to health and wealth in the current EU-27. It also encourages investment from outside of the EU, clearly good for business and jobs.

Similar challenges, similar messages and consensus

When all of the concerned stakeholders, be they politicians, care authorities, care professionals, citizens and patients, service providers, technology providers and investors, are committed to working together, this should create a favourable environment for the design and deployment of new care models.

Coordinating global policies with EU policies and innovation programmes in personalised medicine is an urgent need. 

And, as personalised medicine develops, a number of good practices are emerging, not least regionally such as in Italy and Spain, which, individually and collectively, offer insights into how to design and implement successful new models at the EU while respecting sovereignty. 

The EU’s member states as well as stakeholders are key to speeding the full integration of personalised medicine into Europe’s healthcare systems.

Areas such as genomics, and the explosion in potentially paradigm-changing Big Data streams, should allow Europe to put its millions of potential patients across different regions at the heart of this incredible revolution.  The EU health Data Space has a key role here. 

As of yet, though, the EU has struggled to bring innovation into the bloc’s healthcare systems so more work is needed. 

Member states need to coordinate in a much smarter fashion to help address this issue, and this is at the heart of what EAPM is all about in 2022 and the coming years.

A report/article will be issued in the coming month.   

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