Health networking on cancer in the European Union: a 'green paper' by the EU Joint Action on Networks of Expertise (JANE).

Health networking is in principle a formidable instrument to address many challenges posed by cancer, one of the two most common and most lethal non-communicable chronic diseases. The European Union (EU)'s Beating Cancer Plan foresaw the addition of new health networks to the four already existing European Reference Networks on rare cancers: the Network of Comprehensive Cancer Centres and several networks of expertise (NoEs), which will be shortly deployed on items as complex and poor-prognosis cancers, palliative care, survivorship, personalised primary and secondary prevention, omic technologies, hi-tech medical resources, and cancers in adolescents and young adults. The community of experts of the EU Joint Action, due to build such NoEs, has drafted this 'green paper', incorporating 13 open questions, in an effort to foster discussion on some open questions about health networking on cancer in the EU.

Policy brief Belgian EBCP Mirror Group patient and citizen engagement.

Rights, preferences, needs and expectations of patients and citizens can only be respected and addressed if they are well understood. As such, a continuous, systematic and formalised dialogue between patients, citizens and policy makers is required to ensure ethical and socially appropriate cancer prevention, diagnostics, treatment and care. Relying on donations and project-based funding is not a sustainable way to ensure patient involvement and representativeness in policy.

Linking health survey data with health insurance data: methodology, challenges, opportunities and recommendations for public health research. An experience from the HISlink project in Belgium.

In recent years, the linkage of survey data to health administrative data has increased. This offers new opportunities for research into the use of health services and public health. Building on the HISlink use case, the linkage of Belgian Health Interview Survey (BHIS) data and Belgian Compulsory Health Insurance (BCHI) data, this paper provides an overview of the practical implementation of linking data, the outcomes in terms of a linked dataset and of the studies conducted as well as the lessons learned and recommendations for future links.

Expanding citizen engagement in the secondary use of health data: an opportunity for national health data access bodies to realise the intentions of the European health data space.

The European Health Data Space (EHDS) aims to make the primary use of health data for healthcare provision more continuous, effective, and (cost) efficient. Moreover, it pursues to facilitate the secondary use of health data for purposes such as research, innovation, and policy making. In the context of secondary use, the EHDS legislative proposal (published on 3 May 2022) argues that Member States should develop Health Data Access Bodies (HDABs) whose responsibilities include facilitating the secondary use of health data, issuing data permits, and implementing high levels of accountability and security.

Do genomic passports leave us more vulnerable or less vulnerable? Perspectives from an online citizen engagement.

Since genomics is becoming commonplace in healthcare for the diagnosis, treatment, and prevention, the prospect of generating a genomic passport for all citizens is gaining traction. While this would have many advantages, it raises ethical issues requiring societal debate alongside academic reflection. Hence, Sciensano-the Belgian scientific Institute of Public Health-organised an online citizen engagement on genomic information usage, including a question on a genomic passport for all.