Working towards joint understanding in Europe of the benefits of linking policy and novel care options

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Berlin, 11 October 2023: 

Further progress has been made this Monday and Tuesday towards building a comprehensive  EU platform for cancer and public health genomics, as is revealed through the latest conference of Can.Heal, being hosted by Charité in Berlin and organised under the umbrella of CAN.HEAL. The sessions demonstrated that much has been achieved by the consortium and that CAN.HEAL is gaining momentum

Leading European figures from medical science, innovative technology developers and EU health policy spent two intensive days plotting the next stages in bringing a new coherence to advanced health care.

Under the expert support of the organisers Anke Bergmann, Deputy Director of Department  Hannover Medical School, and  colleague James McCrary, the meeting made clear not only what progress has been made on this ambitious and unique agenda, but also points to where greater efforts are needed to overcome the innate challenges of Europe’s healthcare system.

The exchanges offered clear evidence of the significance of the choices and decisions that have to be made as Europe struggles to identify the best ways forward to take advantage of new opportunities in healthcare.

In discussions of the European Health Data Space, the EU’s current bid to regulate how personal data may best be used for individual health and for research, the insistence  by Dorothee Andres of Germany’s Federal Ministry of Health on the importance of ‘opt in’ in arrangements that ensured individuals would by default preserve the confidentiality of their genetic data was met by a chorus of opposition from elsewhere within the consortium, equally insistent that ‘opt out’ was the only mechanism that could support empowering data for the benefit of patients.

The example was given of Austria’s laws successfully providing organ donation as the default option at the time of death, unless individuals explicitly opt out.  By contrast, in Germany, organ donations are lower, because of opt-in requirements that leave many people unaware that they have to explicitly opt in, even when they might have been disposed to donate.  

The same impact would be felt from imposing opt-in requirements on EHDS, creating obstacles for translational research and limiting the potential benefits to patients.

The Berlin meeting follows the project’s launch conference in Brussels and stakeholder conference in Rome and will be followed in the coming weeks on Oct 19th/20th  with a further review in Madrid, continuing the impetus that is generating new understanding of what can be achieved in modern healthcare by closer links between delivery and policy formation.

Monday saw a scene-setting by the project coordinator, Marc Van Den Bulcke of Sciensano, who stressed the groundbreaking nature of the Can.Heal project link as it works towards a European agenda to speed up the delivery of diagnostic and public health genomics services to patients and citizens. 

Fittingly, the European Commission’s HaDEA, responsible for much of the management decisions on the €20 bn the EU is investing in its health programmes by 2027, provided a revealing insight into the scope and opportunities within this new policy framework.

The first day’s business explored what biobanking and enhanced clinical utility can bring to better exploit genomics for public health, and how cancer diagnostics and treatment for all can be revolutionised by improved prevention and early detection, the engagement of multidisciplinary tumour boards in diagnosis and treatment decisions, and the use of oncology decision support tools in treatment and follow-up.

As a project embracing the social as well as the scientific aspects of advanced healthcare, Monday’s sessions also focused both on hardware such as next generation screening and liquid biopsy techniques and on the software of law, ethics, outreach, citizen engagement and education and training, with an examination of the need for integration of policy and reimbursement.

A multi-stakeholder session that the European Alliance for Personalised Medicine organised on outreach and communication featuring a valuable intervention by Béla Dajka, Health Policy Officer at DG SANTE of the European Commission who gave an overview of implementation to date – and who highlighted the continuing sticking points to date of obtaining reimbursement and of the level of evidence demanded by regulators.

Eminent experts such as Marcus Guardian, who piloted Europe’s health technology cooperation as COO of EUnetHTA, Francesco de Lorenzo, president of the European Cancer Patients Coalition and Lars Bullinger of the Charite hospital led the first day’s exchanges, supported by senior executives from AstraZeneca (Stefanie Schattling) and Illumina (Samuel Kroll).

Translation of concepts into reality, even when the benefits are obvious, is always difficult in health care because of the complexities of individual systems at national – and even regional – level. The richness of Europe’s diversity also means that interpretation of best practice may also be subject to divergences in approach, organisation, even local culture.

Europe is currently in the process of a major shift in its approach to health and healthcare. Not only did the Covid pandemic highlight the importance of prevention as well as treatment; it also showed that Europe can operate more effectively when it operates together. 

And a raft of changes – some legislative, some in terms of joint projects, cooperation or guidance – are underway on everything from how to speed the approval of new technology while safeguarding patients, through to widening access to the vast volumes of health data that are generated every day. 

Against the background of an upcoming European Parliament election in mid-2024 and the choice of a new European Commission, the options for influencing the emergence of a clearer pathway towards policy coherence in health have never been better. 

On Tuesday, attention turns to use cases showing how new concepts can be translated effectively into policy.

The value of polygenic risk score for breast cancer, stratification of cancer risks, and tackling specific challenges of cancers in pregnancy or pediatric leukemia were displayed as illustrations of the growing impact of using genomics in public health, coupled with demonstrations of how early detection is already bringing new hope to patients.

The key question that Can.Heal is elucidating is how far a better understanding is achievable between the two determinant groups of actors in grasping this moment – those creating and using and benefiting from valuable new techniques and technologies, and those responsible for the policy choices about how and when and where this potential can be realised.

The upcoming conference in Madrid – with input from the  Commission as well as a range of institutional partners in attendance – will take the process ahead, with further demonstrations of how to improve healthcare systems with new efficiencies, new therapies, new diagnostics, and new economies.

Taking place during and alongside the ESMO conference, this meeting already has more than 100 registrations to pursue the discussions on an appropriate regulatory environment, action to sustain innovation in research institutes and industries, promotion of take-up of innovation by the healthcare establishment, and resolution of the range of vital legal and ethical questions centred on safeguarding patients and their rights. 

Please find the link, HERE to register and the agenda HERE


Notes for editors: 

CAN..HEAL AGM, Oct 9th/10th, 2023: Building the EU Cancer and Public Health Genomics platform

The project is funded by the European Commission EU4Health Programme 2021-2027 under Grant N° 101080009