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.

Precision cancer medicine: What has translated into clinical use in Belgium?

Rationale: In 2016, Belgium launched the Next Generation Sequencing (NGS) Roadbook, consisting in 10 Actions, across the health care system, to facilitate the uptake of NGS in routine clinical practice. We compiled feedback on deployment of the NGS Roadbook from governmental stakeholders and beneficiaries: health policy makers, insurance providers, pathologists, geneticists, and oncologists.

Main Findings: The Roadbook ensured the establishment of a Commission on Personalized Medicine and NGS testing guidelines.

The Belgian DNA Debate: An Online Deliberative Platform on the Ethical, Legal, and Social Issues of Genomics.

Introduction: Genomics is increasingly being implemented in the society. To fully realise this implementation, citizens should be consulted about their perspectives on genomics and its associated ethical, legal, and social issues (ELSI) to enable them to co-create with experts a society-supported framework in genomics.

Methods: A Belgian online DNA debate was organised, where 1,127 citizens contributed to its deliberative platform.

Citizens' conceptions of the genome: Related values and practical implications in a citizen forum on the use of genomic information.

Background: The development of large data sets, including genomic data, coupled with rapid advances in personalized medicine where citizens increasingly face complex choices about the use of their genomic information implies that citizens are essential stakeholders in genomics. They should be engaged in the ethical, legal and societal issues to produce a framework that fosters trust and allows them to guide the technology based on their values.

Objective: This article highlights that citizens' conceptions of the human genome inform about and make sense of their main values regarding the use of genomic information, which is critical for policymakers, experts and stakeholders to understand to maintain the public support in genomics.

Evaluation of Absenteeism, Pain, and Disability in Nurses With Persistent Low Back Pain Following Cognitive Functional Therapy: A Case Series Pilot Study With 3-Year Follow-Up.

Objective: Persistent low back pain (PLBP) is a common and costly health problem worldwide. Better strategies to manage it are required. The purpose of this study was to longitudinally evaluate absenteeism, pain, and disability in nurses with PLBP following a cognitive functional therapy (CFT) intervention.

Roadbook for the implementation of next-generation sequencing in clinical practice in oncology and hemato-oncology in Belgium.

In the field of oncology research, next-generation sequencing has contributed significantly to the discovery of DNA mutations associated with diagnosis and prognosis. It also aids in the development of targeted therapies to specific mutations and the rise of personalized medicine. As part of molecular diagnostics in cancer patients, analysis by next-generation sequencing is becoming part of routine clinical practice.

Ethical considerations of researchers conducting pediatric clinical drug trials: a qualitative survey in two Belgian university children's hospitals.

Unlabelled: There is a general consensus about the underlying theoretical ethical principles that ground the practice of pediatric clinical trials: scientific necessity, good risk/benefit ratio, minimized burden, and parental consent/child assent. However, these principles are so broadly construed that it is not always clear how they should be applied in clinical practice. We conducted a qualitative study at Ghent University Hospital and the hospital of the Dutch-speaking university of Brussels on how researchers weigh ethical principles, assess the risk/benefit balance, estimate patient experience, and experience informed consent procedures in pediatric drug studies.

The efficacy of interventions for low back pain in nurses: A systematic review.

Objectives: To investigate the efficacy of interventions for the prevention and treatment of low back pain in nurses.

Design: Systematic review.

Data Sources: The review was registered on the PROSPERO database (CRD42015026941) and followed the PRISMA statement guidelines.

Cross-border reproductive care for law evasion: should physicians be allowed to help infertility patients evade the law of their own country?

There are fundamental differences between countries with regard to legislation on assisted reproduction. Many infertility patients are looking to evade the law of their own country and make use of reproductive services abroad. The role of the local physician in cross-border reproductive care for law evasion has been characterized as "channeling local patients to foreign medical establishments" and "against the spirit and essence of the law".

Cross-border reproductive care for law evasion: a qualitative study into the experiences and moral perspectives of French women who go to Belgium for treatment with donor sperm.

One consequence of the legal diversity in Europe is that legal restrictions on treatments can be evaded by going abroad. Many French lesbian couples and single women are crossing the border to Belgium because they are denied access to treatments with donor sperm at home. This is the first qualitative research study into the experiences and moral perspectives of these women.

Lumbar repositioning error in sitting: healthy controls versus people with sitting-related non-specific chronic low back pain (flexion pattern).

Studies examining repositioning error (RE) in non-specific chronic low back pain (NSCLBP) demonstrate contradictory results, with most studies not correlating RE deficits with measures of pain, disability or fear. This study examined if RE deficits exist among a subgroup of patients with NSCLBP whose symptoms are provoked by flexion, and how such deficits relate to measures of pain, disability, fear-avoidance and kinesiophobia. 15 patients with NSCLBP were matched (age, gender, and body mass index) with 15 painfree participants.

Reflections of Dutch patients on IVF treatment in Belgium: a qualitative analysis of internet forums.

Study Question: What information is shared on Dutch internet forums with regard to infertility treatment in Belgium?

Summary Answer: The online discussion mainly regards medical treatments, feelings and experiences, and financial implications. The general tone of the discussion on the forums about fertility treatment in Belgium is that Belgian clinics offer better quality of care.

What Is Known Already: The internet is the most important source of information for cross-border patients.

The consequences of S.H. and Others v. Austria for legislation on gamete donation in Europe: an ethical analysis of the European Court of Human Rights judgments.

There is a high degree of legal diversity within Europe concerning medically assisted reproduction. This is in direct opposition to the project of harmonization of the European institutions. This paper takes a closer look at the different national interpretations of the European Convention on Human Rights with regard to gamete donation.

Extraterritorial laws for cross-border reproductive care: the issue of legal diversity.

Certain states impose restrictions on assisted reproduction because they believe such acts to be morally wrong. However, people who live in a state with restrictive legislation always have the option of going abroad to evade that law. Turkey and several states in Australia have enacted extraterritorial laws to stop forms of reproductive travelling for law evasion.

Comparing lower lumbar kinematics in cyclists with low back pain (flexion pattern) versus asymptomatic controls--field study using a wireless posture monitoring system.

The aim of this study was to examine lower lumbar kinematics in cyclists with and without non-specific chronic low back pain (NS-CLBP) during a cross-sectional cycling field study. Although LBP is a common problem among cyclists, studies investigating the causes of LBP during cycling are scarce and are mainly focussed on geometric bike-related variables. Until now no cycling field studies have investigated the relationship between maladaptive lumbar kinematics and LBP during cycling.

Extraterritoriality for cross-border reproductive care: should states act against citizens travelling abroad for illegal infertility treatment?

Since the development of assisted reproduction technologies, there has been discussion on which people should have access to these technologies and which treatments and techniques are morally acceptable. However, national legislation can no longer determine what citizens do. Some countries react to their citizens going abroad to evade restrictions by implementing even more restrictive laws.