The Value of Diagnostic Information in Personalised Healthcare: A Comprehensive Concept to Facilitate Bringing This Technology into Healthcare Systems.

Health systems around the world seek to address patients' unmet health needs for a range of acute and chronic diseases. Simultaneously, governments strive to keep healthcare spending sustainable, while providing equal access to high-quality care. This has fuelled debate around what constitutes a valuable healthcare intervention in a health system and the corollary consideration of what governments are willing to pay for a certain health intervention. Until recently, the value of information in general, and the value of diagnostic information (VODI) specifically, was not part of the discussion.However, investment in diagnostic information can be a key development as information may guide more effective and efficient healthcare and help maintain an affordable health system. This paper therefore explores ways to best define, evaluate, and reward the value created from diagnostics in healthcare and how to include these value considerations in decision-making processes for diagnostics. The authors ultimately call for a holistic VODI framework that accounts for the full range of potential benefits of diagnostic testing, beyond the traditional clinical and health economic domains, and that is essential to recognise, measure, and fully leverage the benefits of diagnostics for patients, health systems, and society.

Global implementation of genomic medicine: We are not alone.

Around the world, innovative genomic-medicine programs capitalize on singular capabilities arising from local health care systems, cultural or political milieus, and unusual selected risk alleles or disease burdens. Such individual efforts might benefit from the sharing of approaches and lessons learned in other locales. The U.S. National Human Genome Research Institute and the National Academy of Medicine recently brought together 25 of these groups to compare projects, to examine the current state of implementation and desired near-term capabilities, and to identify opportunities for collaboration that promote the responsible practice of genomic medicine. Efforts to coalesce these groups around concrete but compelling signature projects should accelerate the responsible implementation of genomic medicine in efforts to improve clinical care worldwide.

Publish or be damned: Individual Funding Requests and the publicity condition.

Many jurisdictions have processes to consider Individual Funding Requests but, with few exceptions, the decisions made with respect to these are not made public. Drawing upon Daniels and Sabin's account of the requirements of procedural justice, Accountability for Reasonableness, this paper considers several arguments for and against publishing individual funding request decisions. After briefly reviewing the case for publicity as a requirement of procedural justice and canvassing several arguments against publicity, we consider whether patient confidentiality justifies suppressing funding decisions. We claim that, with one possible exception, publication of individual funding request decisions does not raise concerns that are different in kind from those that apply to publication of legal judgments relating to healthcare, and that the protections instituted in that setting should be sufficient to allow publication of funding decisions. The discussion concludes with several cautionary notes.