The massive information leak ever known

No Place to Hide: Edward Snowden, the NSA, and the U.S. Surveillance State

 If someone says to you that a governmental agency has been collecting  data on more than 97 billion emails and 124 billion phone calls in just 30 days, you'd probably think that it is not possible. Imagine a system that has the capacity to reach up to 75% of US emails (!). This is impressive.
Unfortunately, this is absolutely true. Nobody has  rejected it at NSA.One year after the Snowden disclosure of surveillance activities, the US Congress has had to change existing laws and Courts  that allowed such practices.

The international data collected in a single thirty-day period from Germany (500 million), Brazil (2.3 billion), and India (13.5 billion). And yet other files showed collection of metadata in cooperation with the governments of France (70 million), Spain (60 million), Italy (47 million), the Netherlands (1.8 million), Norway (33 million), and Denmark (23 million).

As you may imagine this is not a US issue, but unfortunately the impact and public pressure for change over politicians is different across countries.

I've finished reading the Greenwald book and The Snowden files. I suggest you to start with Greenwald one, the original source better than the remake. I think that one of the most interesting parts is when he explains the rationale for his information disclosure, in Chapter 2:

“The true measurement of a person’s worth isn’t what they say they believe in, but what they do in defense of those beliefs,” he said. “If you’re not acting on your beliefs, then they probably aren’t real.”

  “I do not want to live in a world where we have no privacy and no freedom, where the unique value of the Internet is snuffed out,” Snowden told me. He felt compelled to do what he could to stop that from happening or, more accurately, to enable others to make the choice whether to act or not in defense of those values.

 The book is a milestone over the conflict between freedom and surveillance, over the value of privacy in our current times. It explains many details and raises a lot of uncertainty when using internet for any reason.

PS. By the way, I haven't seen any request to our politicians about how many emails have been suplied to US authorities, how they can justify such leakage and how they have selected them. Somebody must responsible for that.


PS. New report on integrated care, by Antares.

Parov Stelar, All night

Population-based genomic medicine in an integrated learning health care system

Patient-Centered Precision Health In A Learning Health Care System:Geisinger’s Genomic Medicine Experience
The Path to Routine Genomic Screening in Health Care
Medicine's future

If you want to know a latest development on the implementation of precision health, then Geisinger Health System is the place you have to go. And the Health Affairs article explains the details about the initiative and MyCode biorepository.

In 2014 the MyCode initiative began to conduct whole exome sequencing and  genotyping on collected samples, as part of a collaboration with Regeneron Pharmaceuticals and the Regeneron Genetics Center.12 Whole exome sequencing analyzes genes that code for proteins and associated gene regulatory areas—about 1–2 percent of the whole genome containing the most clinically relevant information. To date, nearly 93,000 exome sequences have been completed.

 The rapidly changing knowledge about gene-disease associations requires a process to reanalyze previously analyzed sequences and incorporate new knowledge about variants’ pathogenicity. Approximately 3.5 percent of participants have a reportable variant. As of January 2018, results had been reported to over 500 MyCode patient participants.

Interesting article, a private initiative of public interest. More info in: Science and Annals

 Josep Esquirol in Palafrugell 

Beware of healthcare providers consolidation

The Potential Hazards of Hospital Consolidation Implications for Quality, Access, and Price

The key message:

  With the current most substantial consolidation of health care in US history, the concerning implications of the trend of hospital consolidation on quality, access, and price must be carefully considered. However, unlike banks that became too big to fail, 85% of US hospitals pay no taxes because they are designated as nonprofit organizations serving a public good. Hospitals can set prices that are ultimately passed on to others in the form of escalating insurance deductibles and taxes.

The alternative:

 The good work of integrated hospitals should continue to create networks of coordinated care, while at the same time, physicians and patients should insist that hospitals compete on transparent prices and quality outcomes. Achieving this goal is an important prerequisite to a functional health care system.

El camí cap a la integració assistencial

Enablers and barriers to integrated care and implications for Monitor

Des de Monitor, el regulador sanitari britànic dels Foundation Trusts ens arriba aquest informe que ha produit un equip encapçalat per Frontier Economics. El tema de la integració assistencial ocupa i preocupa. I encara que fa molts dies que això és així, ara el que cal és veure què funciona, què facilita que funcioni millor i què ho impedeix. A totes aquestes qüestions s'enfoca el document. És una revisió i prou, no cal que hi dipositeu més expectatives. Les referències bibliogràfiques són per guardar i tenir en compte. Malauradament no hi ha cites a experiències properes encara que n'hi ha de molt exitoses. Confirmo el que vaig dir fa mesos, sota el paraigua de la integració assistencial hi ha moltes perspectives diferents.

De Joan Miró. Naltros ja fa temps que l'ajudem, però ni aixina se n'ha sortit. La línia de crèdit de diumenge passat equival a 6 anys de dèficit fiscal a fons perdut, del 2003 al 2009.

An article that surpasses publication bias

Evaluación de la efectividad de un programa de atención integrada y proactiva a pacientes crónicos complejos

Publication bias (Wikipedia dixit): Publication bias is a type of bias that occurs in published academic research. It occurs when the outcome of an experiment or research study influences the decision whether to publish or otherwise distribute it. Publication bias matters because literature reviews regarding support for a hypothesis can be biased if the original literature is contaminated by publication bias. Publishing only results that show a significant finding disturbs the balance of findings

We've just surpassed such conventional view and have published a new article on integrated care and I've prepared a short post in the blog of Gaceta Sanitaria (in castillian):

La integración asistencial a examen

Todo estudio experimental tiene un contexto, y antes de entrar en el detalle resulta crucial comprenderlo para evaluar sus resultados. Hay dos términos usuales en la política sanitaria de nuestros días: integración asistencial y cronicidad. En Gaceta Sanitaria encontrareis el artículo: “Evaluación de la efectividad de un programa de atención integrada y proactiva a pacientes crónicos complejos”. El programa tiene lugar en el Baix Empordà, en una organización sanitaria integrada y si comparamos indicadores de utilización y calidad seleccionados (Tabla 4) observaremos que superan sustancialmente la media del sistema sanitario público catalán. Este ya es un primer reto en sí mismo, mejorar cuando se parte de una posición de ventaja relativa.

Los profesionales están acostumbrados a dos décadas de práctica asistencial integrada. Esto significa que cualquier aproximación organizativa alternativa se internaliza y se difunde, lo que dificulta aislar el impacto.

Se aplicó un modelo predictivo que resultó ser el punto de partida para la selección de pacientes. Es previsible que en un futuro próximo sea posible la estimación probabilística de trayectorias y episodios para los enfermos crónicos complejos. Esto nos aportaría mayor precisión a la estratificación dinámica de pacientes.

Las conclusiones del estudio muestran ligeras reducciones en la utilización hospitalaria fruto del programa. Pero mantienen patrones similares entre los distintos grupos sujetos a intervención. Es por ello que destacaría dos afirmaciones del artículo: “una situación general de alta calidad asistencial previa y mantenida en el ámbito de la intervención, y una inevitable contaminación entre grupos,  dificultaron la demostración de una efectividad marginal del programa” y “la estratificación de la población con una identificación explícita de los pacientes crónicos complejos puede ayudar a avanzar los resultados, y el criterio clínico los hace  extensivos a todos los pacientes de características similares”.

Esto nos lleva a confirmar las dificultades de los estudios experimentales en los que deseamos probar el impacto de un cambio organizativo. Este estudio sería candidato a no ser publicado, porque su resultado mantiene una ambivalencia y no permite pronunciarse con claridad sobre la opción defendida con carácter general en nuestros días: la superioridad de la atención integrada y proactiva de los pacientes crónicos complejos frente a otras alternativas. Sin embargo, su publicación además de alertar sobre la dificultad de este tipo de estudios, nos señala nuevas pistas.  Más allá de los cambios en la utilización y coste que representa la integración asistencial, necesitamos medir los resultados en salud y la calidad en los episodios asistenciales, comprender el impacto en salud de estas estrategias organizativas. Esta es la tarea más relevante y sobre la que se deberían enfocar nuevos estudios. Es por ello que las investigaciones las estamos centrando en la medida de los cambios en la esperanza de vida de buena salud a lo largo del tiempo y en la medida de los episodios. Este tipo de medidas agregadas, junto con otras de carácter fisiológico y de percepción de salud y bienestar tienen que permitir alcanzar una visión más completa de lo que aporta la integración asistencial.

A tribute to the great Jim Croce (1942-1973)

Health in all policies narrative

Engagement of Sectors Other than Health in Integrated Health Governance, Policy, and Action

A good review on the topic is welcome. You'll find this article in Annual Reviews of Public Health. If health is created largely outside the health sector, engagement in health governance, policy, and intervention development and implementation by sectors other than health, is therefore important. I have reviewed this topic earlier, but I suggest a close look at it and its assumptions:

(a) Health is created largely outside the health care (or disease) sector; (b) the health care (or disease) sector, however, often carries social ownership of all health issues, even when they are beyond its control; (c) the health sector itself is a reproduction of (power) divisions in the public and private sectors and, while calling for integration, is itself fragmented; and (d) calls for broad social engagement with integrated research, policy, action, and governance for health may not align well with assumptions a–c.

The purpose of the article is to provide an evidence-based overview of how broad social engagement in health policy, action, and governance can be initiated, developed, and sustained.

 In Barcelona Caixaforum, right now.

Validesa i utilitat de les proves genòmiques

Genome-Based Diagnostics: Clarifying Pathways to Clinical Use: Workshop Summary

En teoria de jocs es diu que tenim un punt focal quan trobem una solució que la gent tendeix a utilitzar per coordinar-se quan falta comunicació, perquè sembla que satisfà tothom. El concepte va ser introduït per l'economista guanyador del Premi Nobel Thomas Schelling en el llibre The Strategy of Conflict (1960). El que aquest punt focal o equilibri sigui eficient o no ho sigui ja són figues d'un altre paner..
Tot d'una, quan llegia un l'informe de l'IOM sobre tests genètics, m'ha vingut a la memòria Schelling i els seus punts focals. Resulta que s'explica com davant dels biomarcadors s'ha encetat un cercle viciós (punt focal) que només es pot trencar mitjançant un canvi regulatori i d'incentius. Afegeixo un paràgraf d'interès:

The basic problem is that there has been relatively little consistency regarding which biomarkers have been introduced into clinical practice. Very few cancer biomarkers with demonstrated clinical utility have been introduced over the past 30 years. Even among those tests that have been integrated into practice, their use in certain settings has not always been supported by evidence of benefit, such as the use of prostate-specific antigen (PSA) as a screening test (Andriole et al., 2009), said Hayes. This has helped to create what Hayes has termed a “vicious cycle” in which tumor biomarkers are systematically undervalued (Figure 2-1). This undervaluation has led to limited use of these diagnostics by health care providers and poor reimbursement when a marker has been able to navigate the regulatory environment to be brought to market. Lack of use and reimbursement in turn leads to limited funding for biomarker research because the return on investment is low. The perception that markers have little utility has also led to an environment of lower academic  recognition for developing biomarker-based tests. The overall result is reduced ability and incentive to conduct properly designed clinical trials to generate high-quality evidence of clinical utility. In return, there is reduced data certainty, higher skepticism, and few recommendations for clinical use, said Hayes, which completes the cycle by contributing to the poor valuation of marker utility. Hayes focused his recommendations for breaking the “vicious cycle” of undervalued tumor biomarkers on two areas: the regulatory environment and marker reimbursement.

Actualment als USA (i aquí encara menys) no hi ha un procés de revisió de la FDA per a les proves diagnòstiques de laboratori del tipus Laboratory Developed Tests LDT on s'avaluï la validesa analítica, validesa clínica i utilitat clínica. Es regula per la llei CLIA tal com s'explica al text. La proposta és doncs que la FDA prengui part del procés de revisió i es reformuli la regulació existent. I des de la vessant dels incentius, se suggereix que s'estableixin anàlisis cost-efectivitat de les proves que permetin situar el seu preu en funció del valor que aporten.
Ens trobem doncs en un llibre clau per a un moment clau. I qui tingui ulls i vulgui que el llegeixi, són tant sols 105 pàgines fonamentals per entendre una de les qüestions determinants de la medicina del futur.
Em costa admetre que el punt focal per aquí aprop es redueixi a veure passar els dies inexorablement i la innovació tecnològica resti sense avaluar, un equilibri ineficient. En Schelling diria que cal comprometre's de forma creïble per sortir-ne, però per ara i pel que fa al regulador, no ho sé veure per enlloc.

PS. Miss-selling drugs, a The Economist.

PS. La sindicatura emet informe sobre l'Hospital Clínic. Enmig del desori observo que s'han deixat de cobrar 40 milions d'euros amb trasplantaments a forasters!

PS. A DM trobareu alguns detalls sobre el nou sistema de pagament.  Esperem més informació en el futur.

PS. Les autopistes sense cotxes ens constaran 290 milions el 2012, l'any passat van costar 80 milions.

La prova del nou

Public-Private Integrated Partnerships Demonstrate The Potential To Improve Health Care Access, Quality, And Efficiency

El contrast dels models de col.laboració públic-privat és crucial per tal d'impulsar-los o aturar-los. Malauradament ha passat una dècada i encara no hi ha hagut una avaluació independent. A Health Affairs en podem trobar una descripció i anàlisi. Ara bé al final conclouen el mateix, no es pot comprendre els punts forts i febles sense una avaluació rigorosa. Per tant, sols hi trobareu un conjunt de referències útils i informació diversa però haurem d'esperar per a trobar més substància.

L'envelliment i els serveis de salut

 Silver Opportunity: Building Integrated Services for Older Adults around Primary Health Care

Malgrat que organitzar els serveis segons edat esdevé una forma inusual d'afrontar el problema de la salut en general, a la pràctica es fa i a determinades edats passen determinats esdeveniments singulars. Si ens referim a l'envelliment, per si mateix no hauria de ser objecte d'un enfocament diferencial, però l'impacte de la cronicitat és quan més es manifesta.

Per tant, seguint el criteri que el que cal és organitzar els serveis de salut poblacional, també cal dir que certes questions requereixen una atenció particular. I això és el que fa aquest informe del Banc Mundial i que es resumeix a aquesta gràfica. Cal fer una ullada a l'informe sencer perquè això és massa genèric.

Eco

David Cameron puts reputation on the line with five pledges on the future of the NHS

Miro el Telegraph i canviant els noms penso que podria passar ben aprop. L'embolic que s'ha muntat amb la reforma del NHS obliga a en Cameron a sortir i defensar-ne la reputació i les cinc garanties pels ciutadans. Això és el que diu:

The Prime Minister will promise to keep waiting lists low, maintain spending, not to privatise the NHS, to keep care integrated and to remain committed to the “national” part of the health service.
Such is the concern in Downing Street at the damage the issue of NHS reform is causing the Government, that Mr Cameron will put his reputation on the line with a personal pledge to protect its core values. It represents his boldest attempt yet to assuage criticism from his Liberal Democrat Coalition partners and from many health professionals over the impact of the reforms.
In his speech, the Prime Minister will admit that he is willing to act on their concerns after listening to the “profession and patients” during a two-month exercise which was held after Mr Cameron called for a “pause” in the Health Bill’s passage.

PS. I al Lancet trobareu en McKee et al. sobre l'impacte de la reforma en la salut pública britànica i què caldria fer per evitar el desgavell.

PS. Els detalls sobre el projecte de pressupost de salut 2011 els podeu trobar aquí

A bit worse before it gets better

Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease

A new mental frame was created some weeks ago when President Obama gave a speach on the creation of the initiative on Precision Medicine. To be honest, the term was in the title of a 2011 report by IOM.
In my opinion, it is a bundle: stratified medicine+big data+regulatory science+... This is the bundle of the new buzzword, and unless new details arise, nothing specially new.
Now the New Yorker speaks abouts the problems of precision medicine, and focuses on the risks. The final paragraph illustrates the issue:

For Solomon, genetics is simply a new tool with a learning curve, the same as any other. “When the electrocardiogram was first developed, about a hundred years ago, most physicians thought it was voodoo,” Solomon said. “Now, if you don’t understand it, then you shouldn’t be practicing medicine.” But Mary Norton sees that analogy as too simplistic. The pace of genetics research, the variability of test methods and results, and the aura of infallibility with which the tests are marketed, she told me, make this advance a more complicated one than the EKG. Norton believes that, as genetics becomes increasingly integrated into medical care, “over time everyone will come to have a better understanding of genetics.” But, as the demand for DNA testing increases, she says, “it will probably be a bit worse before it gets better.”

Could we avoid the initial bit worse of  "imprecision of stratified medicine"? . I'm full convinced that appropriate regulatory efforts could mitigate such impact. Unfortunately, governments are on vacation.

Profiling complex patients

 Use of Latent Class Analysis and k-Means Clustering to Identify Complex Patient Profiles

Instead of predictive modeling using costs, this is the right approach from a clinical point of view:

This cohort study analyzed the most medically complex patients within Kaiser Permanente Northern California, a large integrated health care delivery system, based on comorbidity score, prior emergency department admissions, and predicted likelihood of hospitalization, from July 18, 2018, to July 15, 2019. From a starting point of over 5000 clinical variables, we used both clinical judgment and analytic methods to reduce to the 97 most informative covariates. Patients were then grouped using 2 methods (latent class analysis, generalized low-rank models, with k-means clustering). Results were interpreted by a panel of clinical stakeholders to define clinically meaningful patient profiles.

And the figures below reflect these results.

Great article.

Figure 1.  Seven Patient Profiles Derived From Latent Class Analysis

 

Figure 2.  Comparison of k-Means Clustering With Latent Class Analysis (LCA)

Table 1.  Baseline and 1-Year Follow-up Characteristics of the Overall Population and by Patient Profile

Table 2.  Key Defining Features and Suggested Management Strategies for the 7 Clinical Profiles of Medically Complex Patients