HPHWD

One of the metrics used to measure health outcomes is the five-year survival rate… what proportion of patients are still alive five years after they are diagnosed with breast cancer? Said differently, we are interested in the length of time between the time of diagnosis and the time of death. There are two ways to improve this metric, by delaying the time of death, or by moving earlier the time of diagnosis. The former is difficult to achieve, and requires genuine progress in medication. The latter is very easy! If we screen younger people, we will move the time of diagnosis earlier. Without any medical progress, we will make the five-year survival rate fall. This phenomenon is known as lead-time bias.

Expanding screening to younger and less vulnerable populations has another effect, which I discussed in Chapter 4 of Numbers Rule Your World. The marginal person who gets diagnosed will be less ill than the average person - Orenstein tells us that the form of disease most commonly diagnosed in younger women (DCIS) ought not even to be called “cancer”. Add less ill people to the population of ill people will automatically improve the survival rate, again without any medical progress. This phenomenon is known as length bias.

The problem is that when public health works, it is invisible. It’s an insidious, persistent public relations issue that plagues public health. Nobody sees when a chain of disease transmission is broken, or when contaminated food is prevented from reaching the market, or when toxic pollutants don’t enter the environment. That’s the point: the goal of public health is prevention, not reaction….

What then can be done to counteract these misperceptions? First, public health needs to be more vocal about its successes.

sometimes publics stall and defer on doing the things they ought to do because at least some of them are old enough to remember other things that they were told they ought to do that later on turned out to be not so important, or actively the wrong thing to do.

Le ministère de la santé ne pourra pas longtemps rester sourd à la demande de transparence sur les données de santé publique en France. La pétition lancée, jeudi 24 janvier, par des associations de consommateurs ou de défense des patients et déjà signée par des professeurs de médecine, des économistes ou des chercheurs pour réclamer la “libéralisation” de l’immense base d’informations collectées depuis des décennies par l’Assurance-maladie ne peut rester lettre morte.

Inconnu du grand public, le Système national d’information interrégimes de l’assurance-maladie (Sniiram) contient des milliards d’informations sur les prescriptions de médicaments, les consultations médicales, les tarifs, etc. Or, depuis plusieurs années, il est au cœur d’un combat larvé sur l’accès à ces données particulièrement sensibles.

La bataille se jouait jusqu’ici en toute discrétion par le biais d’un lobbying auprès des parlementaires et des autorités sanitaires, mais aussi par des demandes déposées à la Commission nationale de l’informatique et des libertés (CNIL) ou des recours devant la Commission d’accès aux documents administratifs. Elle est devenue publique avec le lancement, le 24 janvier, d’un manifeste intitulé “Liberté pour les données de santé” et lancé par l’UFC-Que choisir, 60millions de consommateurs, le CISS (associations de patients) et des entrepreneurs. Parmi les signataires, on trouve aussi des journalistes, des économistes, des épidémiologistes. Tous réclament de pouvoir exploiter à leur guise ces données, anonymisées, afin d’informer le public (analyse des dépassements d’honoraires…), d’effectuer des recherches sur le système de soin, ou à des fins commerciales.

Leur démarche s’appuie sur le mouvement de l’open-data, qui plaide pour l’accessibilité des données. Elle profite aussi du contexte de l’affaire des pilules, les défenseurs d’une avancée estimant que la hausse du nombre d’utilisateurs des bases permettrait de multiplier les chances qu’un lanceur d’alerte –telle Irène Frachon pour le Mediator – se penche sur tel ou tel médicament.

Simply concluding that all forms of incentives are driven by nothing but disrespect for vulnerable populations can express, in itself, the worrying disposition that underlies the dictum of ‘let them eat cake’.

Movements organized around failures of public health and safety are threatening to these regimes because they call out the paternalistic state for failing at its own game. Whatever the form of government involved, one of the modern state’s fundamental roles is to protect its citizens from public health threats. Even when they serve this function poorly, most autocrats claim to be trying, and these campaigns reveal that they are not succeeding.

It shows that palliative care is the opposite of all that rhetoric about ‘death panels,’ ” said Dr. Diane E. Meier, director of the Center to Advance Palliative Care at Mount Sinai School of Medicine and co-author of an editorial in the journal accompanying the study. “It’s not about killing Granny; it’s about keeping Granny alive as long as possible — with the best quality of life.