Archivi Categorie: Health policy

A right to a personal health budget @tkelsey1 @Medici_Manager @pash22

Luke O’Shea, NHS England’s Head of Patient Participation, explains why a “quiet ministerial announcement” is so significant.

Last week in Parliament, ministers quietly made an announcement : From October next year, thousands people in receipt of Continuing Health Care funding will gain a new legal ‘right to have’ a Personal Health Budget.

The announcement went largely unnoticed by the media, patients and professionals.  Usually Personal Health Budget announcements generate Marmite-like reactions – either heralding the end of the NHS as we know it, or being seen a panacea for a person-centred NHS. But last week there was little reaction.

However, this is a significant announcement for a group of people who have less ability than most to determine the path their lives take.  The hope is that Personal Health Budgets will change that. But will they?

It made me reflect on an important experience I had working as a commissioner in the NHS. It was a trip to meet a man about my age receiving Continuing Health Care.  I think about him quite a lot.

He’d been given a diagnosis of ‘treatment-resistant schizophrenia’ and had been moved around the country for over 10 years because of his complex needs.   After a three hour drive, I arrived at the care home where he had lived for the last five years.  We got on well and talked quite a bit.  We sat in the kitchen and I asked him about his hopes for the future.  He wanted a flat of his own.  However, he’d been told for a long time that they were hoping to sort out a flat, with little sign of progress.  He was stuck.

For the NHS, the care home placement was a success.  He was high risk but had had no hospital re-admissions in recent years.  But it did not offer him what he wanted most, to build a normal life.

When the Personal Health Budget announcement was made it occurred to me that his placement budget would have paid for a flat, a full-time support worker and employment support or training, with some left over.  I wondered whether a right to have a Personal Health Budget would have started a different conversation that day I met him.

For me, the announcement on Personal Health Budgets is part of a wider historic movement where people whose lives have been constrained by the state have been offered greater self-determination.

Why would the NHS not want people to actively determine the path of their own lives?  Should people be allowed to choose and buy their own care?

Well, there is a tension.  They might choose services that fit round their lives and not what suits the NHS.  They might decide a job is more important to them than managing the likelihood of hospital re-admissions.  But what does the evidence say?

The University of Kent controlled trial of Personal Health Budgets, involving 2,000 people, showed patients with PHBs out-performing the control group, and even had fewer hospital admissions.  It seems that patients can be experts too.

The Lancaster University Poet Survey also showed significantly improved well-being for most carers, who tend to bear a huge personal responsibility for this group.  It’s rare that we measure the impact of an intervention on families of patients, but here we have.

So we need a bigger debate about Personal Health Budgets and personalisation in the NHS.  The evidence is good, but there are tensions and the implementation challenges are significant.

Personal Health Budgets are not a panacea, but they do start a different kind of conversation.  And they are not going away.  This announcement is part of a wider historic shift towards personalisation and greater self-determination across public services, which once introduced is very hard to go back on.

So let’s hope this announcement is one small step towards a time when everyone, regardless of health need, is given the chance to determine the course of their own lives.

luke-osheaLuke O’Shea is Head of Patient Participation at NHS England.

He has previously worked in national policy and strategy roles at the Department of Health and as a commissioner in a local authority and the NHS.

Prior to that he worked in a range of government departments including leading work on early year services at the Prime Minister’s strategy unit, as a private secretary to a children’s minister and leading cross government working on ageing.

He describes as his proudest achievements his “modest role at the inception of Family Nurse Partnership in the UK and of my work on ageing”.

Value-Based Health Care Is Inevitable and That’s Good @Medici_Manager @pash22 @leadmedit

by Toby Cosgrove

Vaccines. Anesthesia. Penicillin. Bypass surgery. Decoding the human genome. Unquestionably, all are life-saving medical breakthroughs. But one breakthrough that will change the face of medicine is being slowed by criticism, misunderstanding, and a reluctance to do things differently.

That breakthrough is value-based care, the goal of which is to lower health care costs and improve quality and outcomes. It will eventually affect every patient across the United States. Not everyone, however, is onboard yet, because part of the value-based equation is that hospitals will be paid less to deliver better care. That’s quite a challenge, but one that Cleveland Clinic is embracing as an opportunity to do better. Others must, too.

How the Health Care World Will Change

We all know that U.S. health care is too expensive, too inefficient, and the quality is too varied. The goal of value-based care is to fix that.

A major component of the Affordable Care Act is to change the way hospitals are paid, moving away from a reimbursement model that rewards procedures to one that rewards quality and outcomes. No longer will health care be about how many patients you can see, how many tests and procedures you can order, or how much you can charge for these things. Instead, it will be about costs and patient outcomes: quicker recoveries, fewer readmissions, lower infection rates, and fewer medical errors, to name a few. In other words, it will be about value. And that is good.

Whether providers like it or not, health care is evolving from a proficiency-based art to a data-driven science, from freelance physicians to hospital-employed physicians, from one-size-fits-all community hospitals to vast hospital networks organized around centers of excellence. Each step in this process leads to another.

When hospitals employ physicians on an annual salary as we do at Cleveland Clinic, a doctor is paid the same no matter how many patients he sees, how many procedures he performs, or how many tests he orders. One-year contracts hold our doctors accountable, with yearly performance reviews that include each doctor’s quality metrics, clinical outcomes, and research. And having all your doctors on the same team makes it easier to coordinate patient care among different groups of specialists.

As more independent physicians begin to be hired by hospitals, the opportunity for large group practices and hospital consolidation grows. As consolidation expands, data and transparency become increasingly important, as a way to ensure that caregivers across the system are providing comparable care.

All of this, of course, leads back to quality, which requires an effort to achieve standardization, reduce variation, and eliminate unpleasant surprises. It’s analyzing processes, measuring outcomes, and changing practices until you get it right.

To remain viable in today’s rapidly evolving environment, health care systems must reduce costs while continuing to improve quality and outcomes.

The Cleveland Clinic’s Journey

In the October issue of Harvard Business ReviewMichael Porter and Tom Lee cite six components of high-value care-delivery systems: integrated practice units; cost and outcomes measurement; bundled payments; integrated care delivery across facilities; expanded services across geography; and an information technology platform to enable those processes.

As they note, Cleveland Clinic is one of two medical centers worldwide that has implemented all six, beginning with integrated practice units, which we call “institutes.” A patient-focused institute combines medical and surgical departments for specific diseases or body systems. All of our institutes are required to publish outcomes and measure costs. With bundled payments, we combine all the services provided before, during, and after a complex procedure like joint replacement, into a single charge. We have integrated care through shared protocols and the electronic medical record at all of our 75 care-delivery sites. And our expansion across Northeast Ohio into Florida, Nevada, and overseas allows broad geographic access to our services.

What makes Cleveland Clinic different stretches back to our founding 92 years ago as a physician-led group practice that runs a hospital – not a hospital that employs doctors. This distinction is important. Decisions from the CEO on down are made by physicians based on what is best for the patient.

Mining Data

As a leader in the electronic medical records, we have a wealth of data that can tell us what’s working and what’s not. For instance, we were able to comb through data of heart-surgery patients to find that those who received blood transfusions during surgery had higher complication rates and lower long-term survival rates. This finding – mined from our own data – changed the way we do things; we now have strict guidelines in place to limit transfusions.

We’ve made similar strides in many other clinical areas, using data to drive quality. By collecting data on provider performance and making that data transparent, central-line infections have decreased by more than 40%, while urinary-tract infections have dropped 50%.

Data can help identify variations in clinical practice, utilization rates, and performance against internal and external benchmarks, leading to improved quality and a sustained change in culture. Last year, we established a values-based care team, which seeks to eliminate unnecessary practice variation by developing evidence-based care paths across diseases and to improve comprehensive care coordination so that patients move seamlessly through the system, reducing unnecessary hospitalizations and ER visits.

Lowering Costs Without Compromising Quality

American health care is on an unsustainable path. Health care spending topped $2 trillion in 2011. The Centers for Medicare and Medicaid Services predicts that without major change, it will account for more than 20% of GDP by 2021, up from 5.2% percent in 1960. What that means is that if we continue on our current path, $1 in every $5 spent in the U.S. economy will go toward health care.

We can choose a different path, though. At Cleveland Clinic, we’ve been engaged in an ongoing effort to trim costs across the entire system. Through a concerted focus on our supply chain, we use rigorous value-based purchasing protocols, market intelligence, and business analytics to examine every purchase from the standpoint of value, utility, and outcomes. Over the past two years, this has resulted in cost savings of more than $150 million.

Our electronic medical records are also programmed with a “hard stop” function to reduce unnecessary duplicate tests. This led to a 13% reduction in blood-gas determinations, generated $10,000 in monthly savings for laboratory tests, and resulted in savings of $117,000 in just the first month for genetic testing.

A key part of the cost solution is to educate all caregivers, including doctors, about what items cost. Earlier this year, we created a Cost Repositioning Task Force to work with all caregivers across the entire Cleveland Clinic system to assess everything we do and everything we spend. Now, as part of the purchasing process, dozens of doctors gather to discuss the merits of certain products: Which ones provide the best outcomes for patients? How many are needed? How much does it cost?

Traditionally, knowing the cost of a stitch or a catheter or a bone screw — or any of the thousands of other supplies used during surgeries — hasn’t been part of doctors’ medical consciousness. To remedy that, we’ve taped price lists to supply cabinets in some ORs. In others, posters remind everyone to choose supplies carefully, stressing this message: “Without compromising quality, consider cost-effective alternatives.”

As health care reform kicks into high gear, providers are facing a difficult challenge: being paid less to produce better outcomes. We must view this as an opportunity, not a burden. After all, the providers who make the transition early will be rewarded with more satisfied patients, lower expenses, and pride in a job well done.

Follow the Leading Health Care Innovation insight center on Twitter @HBRhealth. E-mail us, and sign up to receive updates here.

Science alone can’t make tough decisions for us @kevinmd @Medici_Manager @pash22


On April 14, The United States Preventive Services Task Force concluded that women with an elevated risk of breast cancer – who have never been diagnosed with breast cancer but whose family history and other medical factors increase their odds of developing the disease–should consider taking one of two pills that cut that risk in half. The Task Force is an independent panel of medical experts who review the medical literature to estimate the pros and cons of preventive interventions. This is the same Task Force that in recent years raised questions about the benefits of mammograms in 40 to 50-year-old women, and PSA tests for men of all ages, tests that screen respectively for breast and prostate cancer. Despite the popularity of both of these tests, the Task Force concluded that their harms often outweigh their benefits.

The irony now is that with this report on breast cancer prevention pills, the Task Force has switched from rejecting something patients believed in to endorsing something most patients will reject.

The seemingly strange way the Task Force ping-pong’s between popular and unpopular recommendations is inevitable, because these kinds of recommendations must necessarily go beyond the medical facts – it is impossible to decide what preventive measures people need without making value judgments.

To understand the way facts and value judgments get mixed together in these kinds recommendations, let’s take a closer look at these breast cancer prevention pills.

For many years now, doctors have been prescribing tamoxifen as secondary prevention to women who have already undergone treatment for breast cancer, in an attempt to thwart any breast cancer cells remaining in their body. In women whose breast cancer cells express “estrogen receptors”, tamoxifen reduces the chance that this cancer will recur, by attaching itself to those receptors, in effect crowding outestrogen. In breast cancer cells, any estrogen landing on these receptors will spur that cell to divide and multiply. But when tamoxifen lands on these receptor sites, it does not stimulate cell growth.

Raloxifene is a close cousin of tamoxifen, which has primarily been used to treat women with osteoporosis. Like tamoxifen, it competes with estrogen for the attention of estrogen receptors. Also like tamoxifen, it slows down breast cancer by preventing estrogen from stimulating cell growth. As it turns out, both raloxifene and tamoxifen also have the strange property that when they collide with bone cells, they don’t fight against estrogen, but seem to mimic estrogen, and thereby improve bone health. (Because these drugs and sometimes act like estrogen and other times act like anti-estrogen, they are called selective estrogen blockers.)

Two very similar drugs, then. Both slow down breast cancer cells while stimulating bone cells. Each drug has been shown to cut the risk of a first breast cancer in half for women with a high risk of experiencing this disease. In what is known as the P1 trial, for example, women who faced an average five year risk of breast cancer of 6% saw that risk drop to 3%, if they took tamoxifen.

Sounds like a good deal, yes? Take a pill for five years, and cut your risk of breast cancer in half. But keep in mind, most women do not face a 6% chance of breast cancer in the next five years. Women with this kind of risk are generally retirement age or beyond, and usually have a bad combination of family history, early onset of menses, and late age of first pregnancy. It is these women the Task Force believes should talk with their doctors about whether to take these medications. And how did the Task Force reach this conclusion? By determining that for some women, at least, the benefits of these pills outweigh their harms. Before looking at this harm benefit ratio more closely, let’s put this Task Force conclusion into context.

The Task Force essentially produces three kinds recommendations, which I have taken the liberty to name.

  1. NADA: When it concludes that the harms of an intervention outweigh the benefits, the Task Force recommends that doctors and patients avoid the intervention. Think: ultrasound screening for pancreatic cancer.
  2. OUGHTA: When the Task Force concludes that the benefits outweigh the harms, it pushes to make the intervention standard of care. For example: routine screening for colon cancer in people 50 years or older.
  3. UP TO THE INDIVIDUAL: When the Task Force concludes that the benefits of an intervention potential outweigh the harms, depending on the patient’s individual preferences, it leaves the decision up to individual patients and their doctors to weigh. This is the recommendation the Task Force made both for mammography in 40 to 50-year-olds, and for tamoxifen and raloxifene to prevent breast cancer.

When making NADA or OUGHTA recommendations, the Task Force essentially makes its own value judgment. It looks at the risks and benefits of an intervention, and concludes that no sensible person could decide differently from the Task Force. In this third type of recommendation, however, the Task Force concludes that reasonable people could make different choices, based on how they weigh the risks and benefits of the interventions.

In the case of tamoxifen and raloxifene to prevent a first breast cancer, I expect the vast majority of women will conclude that the risks of the pills outweigh the benefits.  In the past two years, I have collaborated with a team of researchers at the University of Michigan (led by Angie Fagerlin, a decision psychologist in their medical school), to help women decide whether to take either of these pills. We developed an Internet-based decision aid, a tool designed to help patients weigh the pros and cons of their medical alternatives. (I write about the history of decision aids in my book, Critical Decisions.) Our decision aid provided women with individualized estimates of their odds of developing breast cancer in the next five years. We only directed women to the decision aid whose risk was high enough to have qualified for the P1 trial.

In the decision aid, we described the benefits of both drugs – the reduced risk of breast cancer and the strengthening of their bones. We also laid out the risks – a very small chance of endometrial cancer, a slightly larger chance of heart attack or stroke, a modest risk of cataracts, and finally a very strong likelihood of experiencing menopausal symptoms such as irregular menstrual bleeding and hot flashes. We actually provided them with precise numerical estimates of these side effects, with pictures illustrating the risks to make them easier to comprehend.

Women pondered the pros and cons and concluded, almost unanimously, that the side effects of these drugs outweighed the benefits.

The decision whether to take tamoxifen and raloxifene is no doubt a personal one, and the right choice will vary depending on how a given person weighs the respective risks and benefits of these medicines. For a woman with an extremely high risk of breast cancer over the next five years – say 10% or more – cutting that risk in half might very well be worth the hot flashes and the chance of experiencing blood clots. But very, very few women faced a five year risk is highest.

Consider, instead, a woman with a 3% chance of developing breast cancer over the next five years. That risk is much higher than average – most women face a five year risk of less than 1% – but is it high enough to justify taking one of these pills? For such a woman, tamoxifen and raloxifene only reduce that risk by 1.5%. Over five years. Five years with possible hot flashes. For a cancer women have not experienced yet. These modest benefits simply do not loom large enough to interest most women in these pills.

You might wonder at this point whether our decision aid biased women against these medications. As a physician trained in behavioral economics, I’m constantly on the lookout for decision biases. In the case of our study, however, we designed our decision aid in a manner that allowed us to test for well-known behavioral economic biases. For instance, research has shown  that when people face a choice between three options and two of the options are similar, they often opt for the more different alternative even if the other options are better. In other words, a person might believe that A > B, and A’ > B, but still choose B over A and A’, because they cannot decide between A and A’.

Aware of this problem, we created several different versions of our decision aid. In one version, we presented women with a choice between tamoxifen, raloxifene or no pill. Three choices in other words, two of which – the two medications – are quite similar to each other. In another version of the decision aid, we simply presented women with the choice between pill or no pill. We thought this simpler choice would increase women’s interest in these pills, by minimizing the difficulty of choosing between the two of them. But instead, this reframing of the decision did not increased women’s interest in either of these preventive medicines.

We also designed our decision aid to take account of another well-known decision bias, what are known as recency effects. When people learn about the risks of a medication and then learn about its benefits, that order of information leads them to look favorably upon the medication, because the information they remember best, the last information they receive, is about the pill’s benefits. By contrast, people who receive the same information about this medicine, but in the opposite order, like the pill less, because the last thing they learn about are the pill’s risks, and this information sticks in their minds. To make sure this recency effect was not influencing women’s decisions, we varied the order of information across women. We discovered that this did nothing to change their willingness to take either of these medications, mainly because whichever order women received information in, they did not like the idea of taking either pill.

If these pills are so unpopular among well-informed women, why would the Task Force come out in favor of them? It comes down to judgment. The Task Force concluded that a reasonable person could look at these risks and benefits and decide that the hot flashes and blood clots are acceptable prices to pay to reduce the chance of breast cancer. The majority of women don’t have to agree with this view for the Task Force’s recommendation to be correct. Even if only a small percentage of women decide these pills are worth taking, at least they have the freedom to make that choice. And at least they know that medical experts have concluded that such a decision is a reasonable one to make.

The same goes for whether to start mammograms before the age of 50 in women at normal risk of breast cancer. The Task Force never said that women shouldn’t start mammograms at this earlier age. They just said that it was a tough judgment call, and that some women, perhaps the majority even, might conclude that the harms of early screening – the anxiety caused by false negative tests, the pain caused by unnecessary biopsies – aren’t worth the modest benefits of screening at this age.

If the Task Force is going to leave all these tough decisions up to individual patients and their doctors, why should we care about their recommendations? For starters, you will have a hard time finding a more thorough and levelheaded evaluation of the pros and cons of these kinds of interventions. These people are very good at what they do. In addition, anyone reading through Task Force reports will be forced to recognize that science alone can’t make tough decisions for us. Ultimately, science can only provide us with the facts. The rest of us eventually need to make tough judgment calls. In effect, the Task Force is doing us a huge favor, by showing us which judgments are close calls, and which ones are no-brainers.

Peter Ubel is a physician and behavioral scientist who blogs at his self-titled site, Peter Ubel and can be reached on Twitter @PeterUbel.  He is the author of Critical Decisions: How You and Your Doctor Can Make the Right Medical Choices Together.

Cosa significa Governance per @Treccani? @leadmedit @Medici_Manager @WRicciardi


Governance, tutti insieme aziendalmente

Nell’accezione di ‘insieme dei princìpi, dei modi, delle procedure per la gestione e il governo di società, enti, istituzioni, o fenomeni complessi, dalle rilevanti ricadute sociali’, il sostantivo aziendalistico-imprenditoriale governance, dritto dritto nell’italiano e nelle altre lingue europee del cosiddetto mondo economicamente più sviluppato, si impone, trasvolando l’Oceano Atlantico, a partire dagli inizi degli anni Novanta del Novecento (il GDU, diretto da Tullio De Mauro, certifica il 1988 come data della prima attestazione nell’italiano scritto).
L’anglicismo, che propriamente vuol dire ‘modo di dirigere, conduzione’, inizialmente ha battuto e ribattuto sulle pagine della stampa italiana le piste del mondo dell’impresa, soprattutto perché abbinato all’aggettivo (anglosassone pure lui) corporate‘aziendale’, nella locuzione corporate governance (in italiano dal 1994), che vale, «nel linguaggio aziendale, il metodo e la struttura organizzativa con la quale si distribuisce il comando tra i dirigenti di un’impresa» (
L’orizzonte s’è allargato
Insomma, prima di togliersi, almeno un poco, di dosso le stimmate aziendalistiche, governance ci ha messo qualche anno, almeno a giudicare dai referti archivistici del quotidiano «La Repubblica»: a partire dalla prima attestazione nelle pagine del quotidiano, che è del 1994, nei tre anni successivi devono allinearsi l’una dopo l’altra 26 attestazioni sì, certo, di governance, ma soltanto come secondo elemento della locuzione corporate governance (usata metà delle volte al maschile, metà al femminile: e ancor oggi una sentenza definitiva sul genere non c’è), prima che, finalmente, compaia una governance“scorporata”, libera del marchio a fuoco delle regole e procedure organizzative relative alla distribuzione del comando e alle buone pratiche dirigenziali in azienda che l’aggettivo corporate porta con sé: nel 1997, alfine, si scrive degli «organi della governance economica internazionale» (vedi il primo esempio). E sia, sempre nell’ambito dell’economia restiamo, ma perlomeno l’orizzonte s’è allargato, la governance s’è significativamente traslata altrove: dal grattacielo coi vetri a specchio siamo passati ai consessi degli organismi che tengono (o credono di tenere) il pallino dell’economia internazionale nelle loro mani.
In questa accezione allargata di ‘governo, direzione’, governance finisce ormai da tempo, nel nuovo millennio, col riferirsi a fenomeni di più ampio e generale momento (sempre inquadrabili, in prima istanza, da un angolo visuale economico), fenomeni-cornice, si potrebbe dire, come certifica questo attacco di articolo del 2011, tratto dal «Corriere della sera»: «Il governo Sarkozy aveva dato grande rilievo alla definizione di un set di regole per la governance globale di Internet» (vedi l’ultimo esempio).
Le locuzioni in corporate
Va detto, comunque, che la configurazione dell’azienda (verrebbe da dire: dell’azienda-sistema e dell’azienda-struttura), come entità centrale nelle logiche e nei flussi di contrattazione (interni ed esterni) del denaro e del potere è caratteristica del pensiero economicistico contemporaneo e ha evidenti ricadute sul lessico, che, come si sa, tende a farsi carta assorbente delle ideologie dominanti. Basti un esempio: l’aggettivo cruciale di cui sopra, corporate ‘aziendale’, entra in composizione, negli ultimi trent’anni, in un numero crescente di locuzioni nominali anglosassoni, che poi si impongono nel linguaggio economico e aziendale delle principali lingue di cultura tradizionali, italiano compreso. Ecco allora, nella nostra lingua, arrivare una serie di locuzioni sostantivali, femminili e maschili, come corporate finance ‘complesso di princìpi, metodi e procedure per la gestione finanziaria di un’impresa’ (dal 1986); corporate bond ‘obbligazione emessa da una società privata’ (dal 1987);corporate identity ‘area della comunicazione d’impresa che stabilisce l’identità e la mission dell’azienda’; corporate communication ‘comunicazione d’impresa’ (1998); corporate image ‘reputazione di cui gode un’impresa presso i consumatori’ (1987), corporate strategy ‘strategia mirata alla creazione di valore d’impresa’ (1994). Oltre, ovviamente, al(la)corporate governance di cui già si è detto.
La gubernantia di Boezio
Il bello delle lingue, specialmente se omogenee o reciprocamente permeabili per via di radici in parte comuni e a causa della fittezza di scambi economici, sociali, culturali (per non dire di rapporti politici diretti, fatti di dominio e sottomissione, nel passato) intrecciati tra le comunità parlanti, è che spesso fanno circolare tra di loro parole che appaiono, si impongono in una forma e significato, poi scompaiono da una parte, permangono in altre, ma forse un po’ modificate nell’aspetto o nel senso, poi – come si dice colloquialmente – “ricicciano” dopo decenni, o magari secoli, da un altro punto dell’ecumene e rientrano nel vocabolario in forme in parte nuove e, ancora, in accezioni specifiche diverse rispetto all’origine. È il caso di governance, che – non senza una inusitata sapienza etimologica – il programma di correzione automatico del computer sul quale è stato scritto questo articolo cambia subito in governante. Già, perché l’etimo, evidentemente ha gli stessi lontani natali: governante dagovernare, da governogovernance (inglese) già nell’antichità dal francese gouvernance, a sua volta dal latino medievalegubernantia di Boezio (a sua volta dal verbo, del latino classico, gubernare, da cui il nostro governare). Di questa storia di trasmigrazioni e mutazioni, fortune e sfortune di parole apparentate nella vecchia Europa, scrive Tullio De Mauro nel lemmagovernance del suo godibile Dizionarietto di parole del futuro (Laterza, Roma-Bari 2006, p. 40). L’antico francesegouvernance «ebbe vita modesta e si usava per precisare meglio ciò che parole come governogovern o go(u)vernmentdicevano già benissimo: governo non solo come istituzione politica, ma come modi di regolare la vita sociale, economica ecc. di un’impresa, istituzione ecc.». Succede poi che verso il 1985 la parola inglese “riciccia”, rilanciata virtuosamente dalle istituzioni economiche internazionali. Il successo del “cavallo di ritorno” è immediato. In particolare, scrive ancora De Mauro, «[i]n tedesco e italiano l’anglismo pare senza alternative e piace anche a imprenditori nella locuzione corporate governance, governo d’impresa».
Il lemma
governance ‹ġa’vnëns› sostantivo ingl. (propr. «modo di governo, conduzione, direzione»), usato in italiano al femminile – A partire dal linguaggio aziendale, in cui indica maniera, stile o sistema di conduzione e di direzione di un’impresa (in particolare nella locuzione sostantivale corporate governance, propr. «governo, direzione dell’impresa»), il significato del sostantivo si è rapidamente allargato all’accezione di insieme dei princìpi, dei modi, delle procedure per la gestione e il governo di società, enti, istituzioni, o fenomeni complessi, dalle rilevanti ricadute sociali.
Elaborato dalla redazione di “Lingua italiana” del Portale Treccani
Esempi d’uso
Che se questo Paese ha recuperato negli ultimi anni qualcosa nella considerazione mondiale della sua essenza statale, questo è dovuto all’azione giudiziaria contro la corruzione pubblica e contro la criminalità di stampo mafioso. Gli organi della governance economica internazionale hanno infatti assunto questi due disvalori (corruzioni, crimine organizzato) come parametri universali di un giudizio che pesa su tutto il resto.
Andrea Mazzarella, «La Repubblica», 26 luglio 1997
Il quarto argomento è quello della governance della mondializzazione.
«Il Foglio», 24 agosto 2000 (citato in G. Adamo – V. Della Valle, Neologismi quotidiani. Un dizionario a cavallo del millennio, Leo Olschki ed., Firenze 2003, s.v. governance).
La più parte di essi ritiene che le risposte ai guasti della globalizzazione debbano essere apprestate dai singoli stati nazionali attraverso risposte politiche interne, e non da strumenti di governance sovranazionale.
«Il Manifesto», 28 agosto 2001 (citato in GDLI. Supplemento 2009, diretto da Edoardo Sanguineti, s.v. governance).
Il Ministro dell’Economia sulla costruzione della carta – «All’Ue non serve l’egemonia di un solo pensiero politico» – I pericoli vengono da una antidemocratica e tecnocratica «governance» – Con il «metodo comunitario» i Parlamenti e i governi delegano il potere d’intervento.
Titolazione da «La Stampa», 28 febbraio 2002
Il governo Sarkozy aveva dato grande rilievo alla definizione di un set di regole per la governance globale di Internet, presentato come un tema di rilievo dell’agenda del G8 di Parigi. Dire che la montagna ha partorito un topolino suona perfino ottimistico: le velleità francesi sono naufragate di fronte all’opposizione unanime delle altre potenze.
Carlo Formenti, «Corriere della sera», 1° giugno 2011
Silverio Novelli

“Dove e come mi curo”: trasparenza e informazione anche in Italia @Medici_Manager @WRicciardi

Walter Ricciardi

Dal 25 ottobre scorso – in virtù della direttiva europea 2011/24/UE – ogni cittadino dell’Unione Europea può decidere liberamente di ricevere assistenza sanitaria in ciascuno dei 28 Paesi membri.

È chiaro che, per scegliere il luogo dove curarsi, un cittadino dovrebbe avere accesso ad informazioni chiare, rigorose e tempestive sulla qualità dei servizi offerti, sia ospedalieri (quelli che giustificano il sacrificio di spostarsi da casa propria per avere cure adeguate), sia ambulatoriali e domiciliari. Proprio per questo motivo la direttiva UE raccomandava ai Paesi membri di attivare strumenti, soprattutto su internet, per informare i propri cittadini: in Inghilterra, ad esempio, questi dati sono disponibili da anni e, addirittura, dallo scorso luglio, sono disponibili on line i dati relativi ai singoli professionisti.

In Italia mancava finora un database informativo destinato ad orientare le scelte dei cittadini in ambito sanitario.

Questo sito ‘Dove e come mi curo’ nasce proprio per riempire questo vuoto e aiutare gli italiani a trovare le migliori strutture sanitarie cui rivolgersi per una certa patologia, ma anche per rendere tali strutture attrattive per gli stranieri.

Esso è il frutto di oltre due anni di difficile lavoro di un gruppo di ricercatori, supervisionati da un Comitato Scientifico di assoluto valore internazionale, che ha raccolto, elaborato e spiegato in modo semplice i complessi – spesso incomprensibili ai non addetti ai lavori – dati ed indicatori sanitari per permettere di scegliere dove e come curarsi in modo adeguato.

È un primo passo verso un sistema sanitario più trasparente e verso una partecipazione più attiva ed informata dei cittadini a quello che è ancora uno dei Servizi Sanitari migliori del mondo, ma ha al suo interno enormi diversità che rendono difficile per il cittadino orientarsi.

Ad oggi, è stato possibile includere soltanto alcune problematiche per cui erano disponibili dati ed informazioni pubbliche, ma vi sono ancora tante situazioni che interessano milioni di italiani che non hanno strumenti per scegliere in modo adeguato il proprio luogo di cura.

Confidiamo che la futura collaborazione sia con singoli cittadini, sia con le più importanti associazioni di pazienti che svolgono un lavoro importantissimo in merito, sia con le stesse organizzazioni sanitarie, possa ulteriormente ampliare e migliorare il sito, per la salute dei cittadini e per il bene del nostro Servizio Sanitario Nazionale.

Making Sense of Geographic Variations in Health Care: the New IOM Report @Medici_Manager @pash22 @goranhenriks


Since 1973, when Jack Wennberg published his first paper describing geographic variations in health care, researchers have argued about both the magnitude and the causes of variation.  The argument gained greater policy relevance as U.S. health care spending reached 18 percent of GDP and as evidence mounted, largely from researchers at Dartmouth, that higher spending regions were failing to achieve better outcomes.   The possibility of substantial savings not only helped to motivate reform but also raised the stakes in what had been largely an academic argument.   Some began to raise questions about the Dartmouth research.

Today, the prestigious Institute of Medicine released a committee report, led by Harvard’s Professor Joseph Newhouse and Provost Alan Garber, that weighs in on these issues.

The report, called for by the Affordable Care Act and entitled “Variation in Health Care Spending: Target Decision Making, Not Geography,” deserves a careful read. The committee of 19 distinguished academics and policy experts spent several years documenting the causes and consequences of regional variations and developing solid policy recommendations on what to do about them.  (Disclosure: We helped write a background study for the committee).

But for those trying to make health care better and more affordable, whether in Washington or in communities around the country, there are a few areas where the headlines are likely to gloss over important details in the report.

And we believe that the Committee risks throwing out the baby with the bathwater by appearing, through its choice of title, to turn its back on regional initiatives to improve both health and health care.

What the committee found

The report confirmed three core findings of Dartmouth’s research.

First, geographic variations in spending are substantial, pervasive and persistent over time — the variations are not just random noise. Second, adjusting for individuals’ age, sex, income, race, and health status attenuates these variations, but there’s still plenty that remain. Third, there is little or no correlation between spending and health care quality. The report also effectively identifies the puzzling empirical patterns that don’t fit conveniently into the Dartmouth framework, such as a lack of association between spending in commercial insurance and Medicare populations.
The committee also confirmed earlier work by Harvard investigators showing that, for the commercially insured population, variations in the prices paid by private health plans explain most of the variations in private insurance spending.  The committee deserves considerable credit for deepening our understanding of this irrational world of pricing commercial health care services.  Yet as the report finds, even in the commercially insured population, there are substantial differences in utilization rates across regions.  We would therefore argue that for commercial populations both price and utilization deserve attention, especially because in many regions, avoidable utilization may be easier to address than price.

It is Medicare spending growth, however, that represents arguably the greatest risk to the financial health of the U.S Treasury, and in Medicare, variations are almost entirely the consequence of utilization of services, not prices.  The report finds that the single largest component of the variation in Medicare spending across regions that remains after risk and price adjustment is due to post-acute care (including skilled nursing facility services, home health care, hospice, inpatient rehabilitation and long term acute care). These services have also been a major source of growth.

But this focus on post-acute rather than acute hospital and physician services misses the key point that dysfunctional regional health systems are characterized both by hospitals providing fragmented and expensive care and by a large and thriving post-acute care sector ready and eager to absorb the discharged patients.  For example, Joan Teno and colleagues at Brown University have established the strong association of inpatient treatments with no medical benefit, such as feeding tubes for people with advanced dementia, with high rates of regional resource use.

Which brings us to…..

The IOM committee’s policy recommendations: Where they hit the mark …

The committee makes five policy recommendations — and we agree with all of them.  First, they call for making more and better data available, on both Medicare and commercial populations.  Second, they recommend that CMS continue to test new payment models that encourage clinical and financial integration.  Third, they call for timely and iterative evaluation of current and new payment reforms so that improvements can be made to the models.  Fourth, they call on Congress to grant CMS the flexibility to accelerate the transition to value-based payment models as successful approaches emerge.

The fifth recommendation focuses on whether Congress should adopt a geographically based payment adjustment. When the committee was first mandated by Congress in the midst of health care reform in 2010, congressional members from regions with lower costs espoused a “Value Index” in which Medicare would reward low-spending regions with higher reimbursements, at the expense of high-spending regions. The committee concluded that payment mechanisms should not be tied to region, but instead targeted to individual providers, rightly criticizing the Value Index approach as not providing institutions and systems with the right incentives to reduce costs and improve quality.

… and where they fall short:  Geography does matter

We believe, however, that the committee, by subtitling the report “Target Decision-makers, Not Geography,” will confuse the media and casual readers (for example, those who don’t make it to page 3-3 in the full report) by appearing to cast doubt on the promise of geographic and regional efforts to improve the quality and efficiency of U.S. health care.

As the late Nobel-Prize winning economist Elinor Ostrom has emphasized, successful management ofcomplex social problems can best be achieved through sustained collaboration among diverse stakeholders, often across traditional political boundaries.  She demonstrated that cooperative agreements are often the most effective approach to solving the kinds of problems we face in health care. Among these are the natural instincts of physicians and hospitals within local health care systems to protect their financial health by expanding capacity and defending market share, whether by opening new cardiac centers when the one at the nearby hospital is perfectly adequate, or by buying proton accelerators that will be used to treat conditions where they offer no demonstrated benefit.

The rationale for a geographic focus on health care reform is strong:  the factors that determine population health are largely local, rooted in the environmental, social, economic, and behavioral determinants of health.  Many of the factors that influence health care quality and costs are also local, including local supply, pricing behavior, and the relative emphasis of providers on profit.  For example, in the widely cited New Yorkerarticle by Atul Gawande, Medicare utilization in McAllen was found to be nearly twice as high as that in another Texas border town, El Paso, despite the existence of multiple hospitals in both McAllen and El Paso, nearly identical Medicare prices, and common Texas malpractice laws.

Many regional multi-stakeholder initiatives have been established.   Although most began with a focus on quality, many are beginning to act more broadly to both improve health and lower costs: Three examples include Pueblo Colorado (Regional Triple Aim),  Akron, OH (Accountable Care Community), and the Atlanta Regional Collaborative for Health Improvement (focused on driving provider transitions to global payment, capturing savings, and reinvesting in strategic population health initiatives).

While the IOM Committee is exactly right to call for improved financial incentives for health care providers, we should also remember that both health and health care are local.  Geography matters.

Elliot Fisher, MD, MPH and Jonathan Skinner, PhD are professors at Darmouth’s Geisel School of Medicine and The Dartmouth Institute for Health Policy and Clinical Practice.  Fisher is a  principal investigators, and Skinner is a senior scholar of The Dartmouth Atlas Project.

Fisher, Elliot S. & Skinner, Jonathan S., Making Sense of Geographic Variations in Health Care: The New IOM Report, Health Affairs Blog, 24 July 2013. Copyright ©2013 Health Affairs by Project HOPE – The People-to-People Health Foundation, Inc.

The Importance of Teaching Value-Added Care @Medici_Manager @muirgray @WRicciardi @pash22

By Richard M. Schwartzstein, M.D. and Grace Huang, M.D.

Richard M. Schwartzstein, M.D., Executive Director of the Carl J. Shapiro Institute for Education and Research, Vice President for Education at Beth Israel Deaconess Medical Center, and Faculty Associate Dean for Medical Education at Harvard Medical School

Grace Huang, M.D., Director of Assessment at the Shapiro Institute and Assistant Professor of Medicine at Harvard Medical School

No topic is more timely or relevant to the current political climate than cost-effective care. We at the Shapiro Institute for Education and Research prefer to frame the concept as “value-added care,” which incorporates patient-centered outcomes, including potential harm and discomfort from diagnostic testing. In the face of data that demonstrate wasteful testing and treatments contribute significantly to our rising health care costs, practicing physicians are under pressure to be part of the solution.

The lay public clearly is attuned to this crisis as expressed in the popular press and media reports and is demanding to know why physicians are not taught to consider the value and cost of the tests and treatments they recommend. Changing physician behavior, however, requires more than knowledge-based instruction; rather, we must identify and address the cultural factors that contribute both to patients’ demands and expectations and to physicians’ actions.

Our historical model for training physicians has neglected to incorporate contemporary principles of resource utilization, harm from diagnostics, and cost considerations into medical education curricula. The medical, physical, and emotional consequences of false-positive testing are not real to medical students. Even in the hospital environment, where trainees become increasingly aware of delivery issues—such as readmission rates, observation status, and case management—they still operate under assumptions that tests and services are fully reimbursed and that hospitals are profitable. Consequently, when residents enter the workforce, they are unprepared for the economic realities of our health care system and typically lack the tools necessary to navigate an optimal patientcentered, cost-conscious approach to the evaluation and management of their patients.

Topics such as epidemiology, evidence-based medicine, and diagnostic reasoning represent the cornerstones of the preclerkship curriculum for medical students. But the hidden curriculum and test-ordering practices of attending physicians (who often drive the ordering decisions of trainees) hinder the effective application of these theoretical principles during actual clinical experiences. Most faculty members are neither trained in high value care nor able to identify “best teaching practices.” Academic doctors, particularly those practicing in tertiary medical centers, strive to teach their students and residents the breadth and depth of medicine. The longer and more intricate the differential diagnosis, the better, and supervising physicians often are loath to stifle the curiosity of their trainees.

Patient expectations fuel excessive testing. The fear of malpractice litigation may incentivize health care professionals to pursue diagnostic certainty even at the cost, both financial and human, of multiple tests and procedures. Physicians may assume that patients will seek alternate care if their doctor is reluctant to pursue whatever test the patient thinks is necessary, regardless of the cost. Physicians also may opt for the perceived “easy way out” by giving the patient what he or she wants, rather than entering into a thoughtful, but timeconsuming and potentially difficult, conversation about the reasons for avoiding that diagnostic pathway.

There have been positive steps to reduce waste and contain costs. Campaigns such as Choosing Wisely at the American Board of Internal Medicine have spurred professional societies to highlight unnecessary tests for their specific specialties, while the High-Value Care Curriculum at the American College of Physicians (ACP) provides the knowledge elements and tools to deliver content. But these initiatives, although incredibly valuable starting points for these discussions, may not sufficiently address our medical culture, which demands diagnostic certainty. One key question remains: If we want to influence the actions of future physicians, how do we optimally teach these principles to our current trainees?

In this context, the Shapiro Institute convened an invitational Millennium Conference on Teaching Value-Added Care, co-sponsored by the AAMC and in partnership with the ACP. This spring, teams from six medical schools—Drexel University College of Medicine, Dalhousie University Faculty of Medicine, Geisel School of Medicine at Dartmouth, Case Western Reserve University School of Medicine, Penn State College of Medicine, and Mayo Medical School—joined the Harvard/Shapiro team to consider challenges of the learning environment, propose best instructional practices, and engage in a structured dialogue to build consensus on how to teach value-added care across the medical education continuum.

We will detail our findings in future proceedings. A preliminary summary includes the following highlights.

Value is not strictly about cost; it comes from the patient’s perspective. As such, we must teach and serve as models for the behaviors that elicit patient concerns and preferences about the many nonmedical factors that influence their perceptions of health care. To explain why a particular study highlighted in the media does not apply to an individual patient requires not only knowledge of study design and biostatistics, but also the ability to translate that information to a patient who may not fully understand the study results. Discussing the complications of testing, particularly the consequences of false-positive findings, is challenging and requires a range of communication skills.

Teaching value does not necessarily require significant amounts of extra time.When a test of questionable value is ordered, ask the student or trainee, “How will the results affect what we will do with this patient?” At the end of patient rounds, consider adding questions that foster appropriate test ordering, such as, “Is there anything we ordered today that the patient does not need?” During the traditional morbidity and mortality conferences, add a discussion of hospital costs incurred.

Tackle the hidden culture head-on. The clinical learning environment is typified by routine daily labs, unnecessary diagnostic evaluations, and repeat imaging. Foster a reward system that values cost-effective care by discouraging extensive differential diagnoses that include diseases that are obscure and have a low probability of producing the patient’s clinical picture. Train a core faculty with demonstrated expertise in teaching these topics. Incorporate practice audits of ordering behavior into the teaching competencies of faculty.

The deliberations and recommendations of the committed faculty who attended the Millennium Conference 2013 are only the beginning of our efforts to enhance the teaching of value-added care. We hope our findings will stimulate additional initiatives across the United States and Canada.

Direct costs of inequalities in health care utilization in Germany 1994 to 2009: a top-down projection

Lars Eric Kroll and Thomas Lampert


Social inequalities in health are a characteristic of almost all European Welfare States. It has been estimated, that this is associated with annual costs that amount to approximately 9% of total member state GDP. We investigated the influence of inequalities in German health care utilization on direct medical costs.


We used longitudinal data from a representative panel study (German Socio-Economic Panel Study) covering 1994 to 2010. The sample consisted of respondents aged 18 years or older. We used additional data from the German Health Interview and Examination Survey for Children and Adolescents, conducted between 2003 and 2006, to report utilization for male and female participants aged from 0 to 17 years. We analyzed inequalities in health care using negative binomial regression models and top-down cost estimates.


Men in the lowest income group (less than 60% of median income) had a 1.3-fold (95% CI: 1.2-1.4) increased number of doctor visits and a 2.2-fold (95% CI: 1.9-2.6) increased number of hospital days per year, when compared with the highest income group; the corresponding differences were 1.1 (95% CI: 1.0-1.1) and 1.3 (95% CI: 1.2-1.5) for women. Depending on the underlying scenario used, direct costs for health care due to health inequalities were increased by approximately 2 billion to 25 billion euros per year. The best case scenario (the whole population is as healthy and uses an equivalent amount of resources as the well-off) would have hypothetically reduced the costs of health care by 16 to 25 billion euros per year.


Our findings indicate that inequalities and inequities in health care utilization exist in Germany, with respect to income position, and are associated with considerable direct costs. Additional research is needed to analyze the indirect costs of health inequalities and to replicate the current findings using different methodologies.

The complete article is available as a provisional PDF. The fully formatted PDF and HTML versions are in production.

What’s in a name? Patients, clients and consumers @Medici_Manager


“suffering or sick person,” late 14c., from O.Fr. pacient (n.), from the adj., from L. patientem

Alternatives to the term ‘patient’ like ’clients’, ’service users’ and ‘consumers’ have come about as a result of attempts to empower patients by changing their relationships with illness, society and the medical professions.

Calling patients ‘consumers’ is not the same as empowering them. It is very unlikely to change the prejudices associated with illness and disease because these are too deeply historically and socially embedded. The relationships between patients and medical professionals have evolved throughout history as traditional hierarchies have changed, patients have become better educated and medical professionals have been taught to be more patient-centred.

Whatever term we use to replace ‘patients’ is embedded in its own web of contexts. What we understand by ‘consumer’ or ‘client’ has changed in time, responding to pressure and criticism about the balance of power in the constituent relationships.

I believe that ‘patient’ is broad and evolutionary and the criticisms and attempts to replace it with other terms reveal important details about social attitudes. Rather than replace ‘patient’ with another term, it is vital that we understand and challenge what we mean by it.

The patient in a historical context.

Extract from ‘Disease and Social Life’ Henry Sigerist, Civilization and Disease 1943

The attitude of society to the sick man and its valuation of health and disease have changed a great deal in the course of history. … The present position of the sick man in society is very complex, the result of historical developments we must analyse briefly if we are to come to a clear view of the subject.

There are very few truly primitive tribes left in the world. Among them the Kubu of Sumatra seem to merit close study … minor diseases, skin eruptions wounds and similar ailments are frequent with them. People suffering from such diseases are not considered different from other tribesmen for their criterion is social not physical. As long as a man is able to live the life of his tribe his condition does not cause any reaction on the part of the individual or of society.

Things are different in the case of serious illnesses more especially those consisting of a fever such as smallpox … Such a patient finds himself unable to take part in the life of the tribe, he is incapacitated and there is a sharp reaction which leads to his abandonment by both the tribe and by his own kin … The sufferer is dead socially long before physical death has overtaken him.

In the case of tribes living in a higher state of civilisation however… the sick man is considered a victim, unable to live like other people because someone has worked upon him. An enemy has done something to him, has bewitched him … Thus the sick man has a special position in society, claiming the regard of his fellow men as well as their help. He is the guiltless victim of secret powers which are recognised and warded off by the medicine man.

…In the ancient Orient … the sick man was by no means an innocent victim but rather one who through his pain is making atonement for his sins. Disease then becomes a punishment for sin [and] we encounter his view in Babylonia and the Old Testament.

Where such a view prevailed the sick man found he burdened with a certain amount of odium. He suffered, but it was believed he suffered deservedly. His disease proclaimed his sin for all to see. He was branded and socially isolated in a particularly severe way. Disease however, was not only a punishment; it was also atonement for guilt, and thus redemption.

To the Greek of the 5th century and long thereafter, health appeared as the highest good. Disease therefore was a great curse … and by removing [man] from this plane of perfection, made him an inferior being. The sick man, the cripple and the weakling could only expect consideration from society so long as their condition was capable of improvement. The most practical course to take with a weakling was to destroy him, and this was done frequently enough. … The Greek physician would have considered it unethical to attend a hopeless case. Thus the sick man in Greek society also found himself burdened with an odium, not that of sin but of inferiority.

Christianity came into the world as the religion of healing… It addressed itself to the disinherited to the sick and afflicted and promised them healing, a restoration both spiritual and physical. Disease is no disgrace, is not a punishment for the sin of the sufferer or of others, nor does it render the patient inferior. On the contrary, suffering means purification and becomes grace. Illness is suffering and suffering perfects the sufferer; it is a friend of the soul…

The social position of the sick man thus became fundamentally different from what it had been before. He assumed a preferential position which has been his ever since.

The attitudes of society towards the sick that prevailed before the Christian era were never entirely overcome. In the Middle Ages and the Renaissance epidemics were very frequently considered visitations inflicted by God .. Until very recently there were still people who considered mental diseases a punishment for a disorderly life and venereal disease a singularly appropriate chastisement because the manifested themselves in the organs with which people had sinned. The old retributive view of disease is also expressed in the outraged feelings of patients who consider their sufferings as undeserved.

Sigerist brings his historical review of the role of the sick man up to the present day,

The sick man, because of his preferential position, finds himself released from many duties. … The more pronounced [this became] the more obvious was the inclination to escape from the struggle of life and to take refuge in the condition of illness.

This introduction is to give a taste, but by no means the full menu, of what it means to be a sick, and by extension a patient. What is striking is that as time goes by, like layers of paint on an old door, new meanings replace old ones, but the old ones remain underneath, coming to the surface through the cracks, often where and when we are not expecting them.

Brian’s old paper notes take up almost half a rack in the filing cabinet, filling the space taken up by the notes of at least half a dozen patients filed alongside. It makes me wonder about the concealment of complexity in the neat electronic patient records we use almost exclusively now, a full life’s history condensed into a front screen. Considering the weight of his records, he treads lightly and looks well. At least he does as he walks across the waiting room. Usually we talk about his latest trips to the dental hospital, the pain specialist and the neurologist, the physiotherapist and the psychologist; whichever he has seen recently. Most of them have been seeing him for years, helping him with his facial pain, muscle weakness and headaches. It wasn’t long ago that I invited him in to talk to my medical students about living with pain. Our consultations had included many discussions about the functional aspects of his symptoms -how they affect his ability to manage his daily activities, his relationships and his emotions and I felt I knew him very well. Nevertheless I had never asked Brian what the pain meant to him; he said he wasn’t sure what I meant, so I said, “some people believe that they are meant to suffer, that it is a punishment for something they have done, do you ever feel like that?”

“Oh yes”, he replied, immediately and confidently, “I know why I’m like this, and I know it’s not going to get better” He alluded to something long ago, but respectfully I didn’t press for details and he made it clear that we had gone far enough at that time. Since then we have discussed on many occasions the guilt that he struggles to resolve since his wife’s unexpected death many years ago. Though he is still in pain, he has stopped seeing two of his specialists and has halved the dose of his medications.

Illnesses have meanings that are imposed by history and culture. As patients we may find that we are unprepared for the meanings our illnesses take on. The writer and philosopher Susan Sontag wrote about this in relation to her experience of breast cancer in her book, ‘Illness as a metaphor’.

She is particularly concerned with the metaphorical issue of tuberculosis in the 19th century and cancer in the 20th. Most of these metaphors are lurid, and they turn each disease into a mythology. Until 1882, when tuberculosis was discovered to be a bacterial infection, the symptoms were regarded as constituting not merely a disease but a stage of being, a mystery of nature. Those who suffered from the disease were thought to embody a special type of humanity. The corresponding typology featured not bodily symptoms but spiritual and moral attributes: nobility of soul, creative fire, the melancholy of Romanticism, desire and its excess. Today, if Miss Sontag’s account is accurate, there is a corresponding stereotype of the cancer victim: someone emotionally inert, a loser, slow, bourgeois, someone who has steadily repressed his natural feelings, especially of rage. Such a person is thought to be cancer-prone. New York Times review 1978

Shortly after her book was published, AIDS was discovered and proved (as if there was any doubt) that illness was still a metaphor. Though the prejudices are fading I still have patients for whom the social and psychological burdens of being diagnosed with HIV or cancer cause far more suffering than the medical effects. Obesity, in being treated as an illness has been medicalised and carries the additional burden of being mythologised as a punishment for the twin sins of gluttony and sloth. By being medicalised it has gained the metaphor of an epidemic. But the most enduring discrimination and weighty metaphors remain for mental illnesses. The continued political rhetoric about the deserving and undeserving sick, the pressure to force people back to work and the fitness to work assessments by private IT company ATOS that pay scant attention to psychological factors add fresh layers to a long history of prejudice. Underpinning many of these metaphors is one of illness as psychological vulnerability; fearful of being or becoming vulnerable ourselves – we have a natural tendency to locate it in other people – it is he, not me, who is in need, it is she, not me, who is vulnerable.

2007 British Medical Journal article about illness and metaphor echoed Sontag, asking journalists and medical professionals ‘to collaborate in developing sets of metaphors that are factually informative and enhance communication between doctors and their patients’. Whilst well intended I suspect it is not only futile for elites to try to control metaphors which are socially and historically embedded, but there is something disturbing about the idea that elites might try or be able to control the metaphors we use.

Maureen looked after her mother for the last 2 years of her life. She had advanced dementia, renal failure and damage to the nerves in her feet – a consequence of her diabetes. She was in terrible pain … when she died Maureen was shattered, emotionally and physically. I referred her to a psychiatrist to for assessment to see if her memory loss was a sign of her own dementia or a consequence of her depression, but she did not attend the appointment, afraid of the answer whatever it might be. When a few months later she developed the first symptoms of diabetes we both knew that she was terrified of following in her mother’s footsteps. Within a few weeks she had developed pain in her feet, she described it exactly as her mother had -when she still had the ability to express herself. I knew that damage to the nerves happens only gradually after years of high blood sugar levels due to diabetes. For Maureen however the pain served to confirm her worst fears. ….

The relationship between patients and suffering and the labels that stick to them is so complex that it is not surprising that people refuse or are reluctant to be called patients.

In her recent lecture, the 2011 Harveian Oration, GP Iona Heath writes,

Words used in diagnosis as a kind of biomedical revelation, are fixed in time; words used in narrative, as a revelation of the human condition, stretch across time.
‘we find that labelling is always a dangerous process … because it connotes problems as fixed or invariant.’

The relationship that many doctors like myself have with our patients is continuous and the ongoing narrative prevents our patients and ourselves becoming trapped within the words and the language that we use or that surrounds us. This is a theme I have written about before in, A world without health professionals and What is the role of a GP today? …  that of a doctor who ‘bears witness’, acts as friend and comforter, confidant and counsellor. As Iona Heath explains in her book, A Mystery of General Practice,

… the key roles of a General Practitioner are firstly to stand as interpreter and guardian at the interface between illness and disease; and secondly to serve as a witness to a patients illness and disease.

By standing guard at the interface between illness and disease we are manning the gates between human suffering and a biomedical label.

Doctors and patients

The relationship between doctors and patients is integral to the term ‘patient’; the act of engaging with a medical professional transforms the person who is seeking help into a patient.

This transformation is centred in the consultation,

The real work of a doctor is only faintly realized by many lay people.
It is not an affair of health centres, or public clinics, or operating theatres, or laboratories, or hospital beds. These techniques have their place in medicine, but they are not medicine. The essential unit of medical practice is the occasion when, in the intimacy of the consulting room or sick room, a person who is ill, or believes himself to be ill, seeks the advice of a doctor whom he trusts. This is a consultation and all else in the practice of medicine derives from it.

Sir James Spence, quoted in, Doctors, Patients and Relationships Tony Dixon

Just as the attitude of society to the sick man has changed over time, so has the relationship between doctors and patients,

The rapid growth of science in the 18th and 19th centuries led to the development of the physician as expert engineer of the body as machine. This state of affairs favoured principally, as we know, developments in microbiology and surgery. Concurrently, patterns of the doctor-patient relationship stressed the latter’s dependency and inferiority. … In treatment, the activity-passivity or at most the guidance-cooperation type of doctor-patient relationship prevailed. Szasz: The Doctor Patient Relationship and its historical context

This kind of medical paternalism is seen as distinctly old-fashioned and the last 30 years or more of medical education at the same time as,

‘the steady drift of social relations, toward increasing acceptance of, and often insistence upon ‘democratic’ or ‘socialistic’ (equalitarian) patterns of behaviour exerts -we assume- a pressure on medical relations to conform to a similar pattern wherever possible. (ibid)

These days patients are rightly seen as experts who have valuable lessons to teach the professionals. The relationship between doctors and patients has been the subject of considerable study, criticism and debate. Retired GP Dr Julian Tudor Hart sums up the situation we general practitioners (family doctors/ primary care doctors) in particular, have been working towards in his book The Political Economy of Healthcare,

Progress in health care depends on developing professionals as sceptical producers of health gain rather than salesmen of process, and on developing patients as sceptical co-producers, rather than consumers searching for bargains.  Productivity in health care depends on complex decisions about complex problems, involving innumerable unstable and unpredictable variables.  These decisions require increasingly labour-intensive production methods, with ever deeper, more trusting and more continuous relationships between professionals and patients.

The relationship between myself and my patients varies considerably from the idealised one of equal partnership and co-production. Many patients are unwilling or incapable of maintaining this kind of relationship, for example when they are severely demented or very young, acutely psychotic or critically unwell, addicted to drugs or intoxicated. At other times, my patients take the lead, guiding me and teaching me about their conditions. Recent examples have been patients with motor-neurone disease and adrenal insufficiency. Factors such as personality, psychology, disease status (unknown, deteriorating, recovering, recovered etc.) wealth, education, sex and social status, all influence the balance of knowledge, power and responsibility.

The ethical principle underpinning the doctor-patient relationship is ‘respect for patient autonomy’ where autonomy, literally means, ‘self government’ or the capacity to make decisions regarding one’s care. We must be careful here not to conflate ‘individual autonomy’ with ‘relational autonomy’, which is capacity that arises from the relationship rather than the individual. I have explored it in more detail in another post about patients and consumers. The social trend and a powerful myth of our time is one of increasing individualism, whereby we are lead to believe in the possibility of ever-increasing personal (not social) freedom and individual (not relational) autonomy.

One consequence of this myth is that there has been a shift in the situation of health prevention from the societal level to the level of the individual. If politicians and medical professionals were interested in evidence-based public health measures they would be tackling the food, alcohol and cigarette industries, increasing the possibilities for exercise by making streets safer and reducing social and economic inequality. But instead, we are forced to deal with the consequences of social problems in our consulting rooms and operating theatres; handing out expensive, ineffective and frequently dangerous prescriptions for addictions and obesity. My patients are admonished for not taking more responsibility for their health at the same time as I am told that I need give my patients more responsibility.

The aim of government today, of all parties, is to shift the burden of responsibility as far downstream as possible. But in a time of widening inequalities, while the responsibility for change is being shifted downstream, power is being shifted up. Responsibility without power or resources with which to act leads to helplessness and is disempowering.

The idea behind this is that health is individually, not socially determined and the role of the doctor is not so much about sharing responsibility as handing it back to patients. Part of this motivation is to diminish the role of the GP so that anyone or anything (smartphone?) can take over (see The Myth of the Trivial consultation) The reductionism of the doctor-patient relationship is part of a wider process of ‘atomisation’ in which the steady politically motivated criticism of human interdependency is leading to increasing individual isolation. In health care this is seen as shift away from a GP of your own towards triage and nurse-practitioners, walk-in centres and telehealth. In hospital care towards mega-hospitals, increasing specialisation, and ‘Assembly line efficiency’. In nursing towards minimally trained nursing assistants and the denigration of the role of personal care. In every job, this leads an ideological point of view, that health care is like any other industry and each job can be compartmentalised and professionals with a holistic approach to the whole patient may be replaced by technicians.

The doctor-patient relationship has in and of itself a powerful therapeutic dimension and I think that is what Sir James Spence meant when he said, The real work of a doctor is only faintly realized by many lay people (ibid).  This is faintly realised and under acknowledged because we live in a technophiliac society, enthralled by the possibility of a dehumanised, de-socialised, de-politicised technical or chemical solution to our problems. Human relationships are demeaned and undervalued, in part because medicine has become subjugated to the market and human relationships are harder to commodify than technical interventions or sedative drugs. The trivialisation of relationships is not new. The word Trivia stems from the word for the three arts of communication; rhetoric, grammar and logic. These were worthy of lesser respect than the ‘quadrivia’; arithmetic, geometry, music and astronomy, the skills of science. The split harks back ancient Rome, and the trivia were the lower arts, ‘only of interest to the undergraduate.’ The continuing hammer and tongs barney between the evidentiologists and the social scientists is a dangerous distraction from the political motives.

Rejecting the patient label.

The idea of the sovereign individual is so powerful that one reason for rejecting the label patient is to prove that we don’t need others. Just as refusing to be called a diabetic is a refusal to be defined in terms of an illness, refusing to be called a patient is a refusal to be defined in terms of a relationship, particularly one that implies dependency.

Psychotherapists and psychologists who have almost universally ditched the term patient in favour of client. Their rationale is that ‘client’ does not have the historical baggage of medical paternalism. It is also about affirming their difference from psychiatrists (medically trained doctors who prescribe drugs to patients rather engage clients in talking therapies)

There are other reasons for rejecting the patient label. In recent decades there has been an ever-widening of disease categories to include the ‘not yet sick’, such as those with hypertension, high cholesterol etc. driven by a medical-industrial complex that profits from defining ever-higher proportions of ever-healthier populations as in need of medication. They are not in any reasonable sense, suffering, though the drugs can cause unpleasant and rarely fatal complications.

We also care for those with chronic conditions such as diabetes, heart disease or even cancer or mental illnesses that are quiescent or in remission. They have no symptoms of illness and are not in any obvious way suffering or sick and yet we call them ‘patients’. We are much less inclined to define patients by their illnesses with labels like ‘diabetics’ or ‘schizophrenics’ because it is clear that the individual experience of living with a condition is so variable as to make this kind of label an insult to the holistic (whole person) care we strive to provide.

Patient and consumers

In many situations, patients do act as consumers; they research, demand and negotiate the care they want, seek second (or more) opinions, try treatments, reject them and try others, pay for preferential treatment, demand refunds or other recompense, have rights and so on. But there are important differences. There is a differential in knowledge and responsibility. My patients are free to harm themselves by consuming cigarettes and alcohol, junk-food and crack cocaine, but if they demand medical treatment that I believe to be harmful, or even ineffective I am not obliged like the shop-owner or drug-dealer to concede to their demands. Since I only see NHS patients, no amount of money will persuade me to treat the rich man better than the poor woman. This is one reason why the NHS is so cherished and trust in doctors is so high; patients believe that they are treated fairly. I am trained to recognise my patients’ unmet needs; when they come in wanting something to help them settle their stomach, by virtue of my expertise I can recommend self care, a tablet, an enema, a scan or a referral for emergency surgery depending on their signs and symptoms. I am not obliged to consider them as an opportunity for profit or loss. Perhaps the simplest way to describe the difference is that with a consumer one asks, ‘what can I do for you?’ and with a patient one asks the question, ‘what’s going on?’

“I always projected my worries onto my thyroid or physical problems, I knew deep down that it was my husband and his drinking, my mother who had suffered panic attacks all her life, who basically I’ve always had to be a mother to … but it was much easier to talk [to my GP] about physical problems, and then they say, that yes they can help with the symptoms and I thought, well maybe I don’t need to bring up all the other stuff, because there’s nothing I or the doctor can do about it anyway”

A consultation is never trivial. Every interaction is an opportunity to build up a relationship of trust and mutual respect so that when serious illness strikes, we are faced with someone we know.

When Jenny came in to see me with a rash on her stomach all she wanted was a different cream from the one she had been using, something stronger to clear it up. She looked pale even though her face was flushed. The ‘rash’ consisted of swollen veins, like small purple worms just under the skin; her liver was enlarged and irregular. All the signs suggested disseminated cancer. Jenny the woman with a rash, became Jenny, my patient.

Whilst patients clearly act as consumers in many ways, there are many ways in which they do not. And one important function of the NHS is that it means that we do not pay for the care we need. This is vitally important because the poorer you are the more likely you are to suffer from illnesses. And yet in a crucial development the Health and Social Care Bill will change that with the introduction of Personal Health Budgets.

The Department of Health reports:

People receiving continuing healthcare support from the NHS will have the right to ask for a personal health budget, by April 2014 Health Secretary Andrew Lansley announced today. … The announcement follows the independent NHS Future Forum report which recommended action to promote personal budgets and implement them within five years to give patients access to tailored services.

Personal Health Budgets are designed for patients with long-term conditions and include all aspects of care except GP and emergency visits. They may be spent on a manicure, laptop, fruit and veg or gym-membership. Clearly patient’s with their own financial resources will be paying for these things already and not relying on a money from the cash-strapped NHS whereas patients with much less money have to choose between these items and physiotherapy, speech  therapy, personal care or medical equipment. Given this responsibility there is now for the first time in the history of the NHS, the possibility that a patient will have to pay for essential care when their personal budget has run out. BloggersRichardblogger and Kate Thomson have discussed PHB in more detail.

The government are in no doubt that patients should act more like consumers. The Office of Fair Trading said,

“It is important that patient demand and choice are able to drive competition and innovation in this market with a view to better value for all patients” John Fingleton, chief executive of the OFT

This report from the NHS Competition and Cooperation Panel states,

The over-arching theme was the belief that choice and information were the key drivers of competition and innovation in healthcare markets, improving patient outcomes and efficiency in patient care.

What happens when patients become consumers?

When patients are treated as consumers rather than patients to whom we have a duty to work with, we risk a return to the days before the NHS described byGeorge Bernard Shaw over a century ago:

… as doctors they pay unnecessary visits; they write prescriptions that are as absurd as the rub of chalk with which an Irish tailor once charmed away a wart from my father’s finger; they conspire with surgeons to promote operations; they nurse the delusions of the malade imaginaire (who is always really ill because, as there is no such thing as perfect health, nobody is ever really well); they exploit human folly, vanity, and fear of death as ruthlessly as their own health, strength, and patience are exploited by selfish hypochondriacs. They must do all these things or else run pecuniary risks that no man can fairly be asked to run. And the healthier the world becomes, the more they are compelled to live by imposture and the less by that really helpful activity of which all doctors get enough to preserve them from utter corruption. For even the most hardened humbug who ever prescribed ether tonics to ladies whose need for tonics is of precisely the same character as the need of poorer women for a glass of gin, has to help a mother through child-bearing often enough to feel that he is not living wholly in vain.

Treating patients as consumers shifts the paradigm from healthcare as a public good to healthcare as a commodity. Furthermore, when I think about patients, I think about ‘my patients’. This is because I have a list of patients for whom I am responsible. I know how many patients I have with diabetes, cancer, depression, heart disease and so on. I know which ones need to be visited at home and who is expected to die. I know who is due to give birth and who has just been born. When I see my patients I do not have to think about how much I could earn or save from each one, by arranging or refusing a referral. Time spent exploring a problem is at least as valuable as time spent arranging a referral.

In summary.

Patient is a term that is loaded with historical, sociological and political significance in terms of its relationship with disease, society and health professionals. Rejecting it is in part an attempt to tackle the associated disempowerment and balance unequal relationships.

Whilst well-intentioned this rejection has been co-opted by modern neo-liberal capitalist ideology. This dis-empowers individuals by devolving responsibility at the same time as widening economic inequality and undermining social solidarity. True patient empowerment comes from the process of co-production within a respectful therapeutic relationship. The term ‘patient’ is both flexible and resilient enough to stand above all the alternatives. It allows patients to be clients and consumers, to teach and be taught, to refuse care and be cared for. It recognises that doctors and patients are stronger when they work together and it confers on doctors a duty of care that is a vital part of the doctor-patient relationship.


  • Patients (the sick) have always been socially excluded in some way, and the label ‘patient’(in contrast to client/ consumer/ customer etc.) identifies the person as being sick. Refusing the label is both a denial and a way to insist on inclusion
  • Conditions such as infectious diseases e.g. TB, and STIs, Cancer and in particular mental illnesses are the most socially stigmatising. Psychiatry / psychology are the most resistant to ‘patient’ preferring client/ service user/ etc.
  • Alternatives client/ service user/ customer/ consumer have even more baggage than patient

The relationship with doctors

  • Paradoxically, the social trend is one of increasing individualism, whereby we insist on personal (not social) freedom and individual (not relational) autonomy. The consequence is that we are expected to stand on our own two feet, unaided by others or society. Rejection of the label patient is an insistence that we don’t need others.
  • Another social trend is the widening of disease categories to include the ‘not yet sick’, those with hypertension, high cholesterol etc. And also those with chronic conditions such as diabetes who have no symptoms of illness and do not in any way feel sick.
  • When doctors treat patients as consumers they may treat them as a means to an end.
  • The relationship between patients and carers is bound up in social and historical matricies and so is constantly in flux
  • The term patient is flexible enough to cope with these different contexts
  • The only fixed concept with patient is one of a relationship with a care-giver
  • Trivia is rhetoric, grammar and logic, the skills of communication, contrasting with quadrivia, arithmetic, geometry, music and atrostonomy, the skills of science. The split happened in ancient Rome, and the trivia were the lower arts, ‘only of interest to the undergraduate.’ This split is enduring, and increasingly we live in a technophiliac society, enthralled by the possibility of a technical solution to all our problems. Human relationships are demeaned and undervalued, in part because as medicine becomes more subjugated to the market, relationships are harder to commodify than technical interventions.


What’s in a Name: ‘Client’, ‘Patient’, ‘Customer’, ‘Consumer’, ‘Expert by Experience’, ‘Service User’—What’s Next? British Journal of Social Work . Dr Hugh McLaughlin 2007

Pharmeceutical Marketing and the Invention of the Medical Consumer. Kalman Applbaum

The problem of treating patients as consumers Harvard Business Review blog

Harveian oration: Divided we fail. Iona Heath

Patients and Consumers Great comment by David from

Wellcome collection, history of pain

What’s in a name: ‘Client’, ‘Patient’, ‘Customer’, ‘Consumer’, ‘Expert by experience’, ‘Service user’, What’s next? Brit J. Social Work

Patient, client or service user? A survey of patient preferences of dress, address of six mental health professions. The Psychiatrist

Patient, client or service user? Therapy works (psychotherapy)

What’s in a name? Brit journal of developmental studies

Psychiatry in limbo New ways of talking Brit J med professionals

Do we need a new word for patients? Julia Neuberger & Raymond Tallis Letter

The Doctor-Patient Relationship, A review J Hughes

Doctors, Patients and Relationships Tony Dixon Can Fam Phys 1989

Patients and doctors, The evolution of a relationship: NEJM

Susan Sontag. Illness as a metaphor

Direct-to-consumer pharmaceutical advertising is the fastest growing form of marketing, rising 330 percent from 1996-2005. About $4.3 billion was spent in the United States in 2009 on drug ads, and companies have expanded their marketing efforts to social media

Share decision making, the pinnacle of patient-centred care: NEJM

Goal oriented patient care NEJM

Defining patient-centred medicine NEJM

What Is the Heart of Health Care? Advocating for and Defining the Clinical Relationship in Patient-Centered Care J. Participatory Medicine.

Clarke, John; Newman, Janet and Westmarland, Louise (2007). Creating citizen-consumers? Public service reform and (un)willing selves. In: Maasen, Sabine and Sutter, Barbara eds. On Willing Selves: Neoliberal Politics and the Challenge of Neuroscience. Basingstoke: Palgrave Macmillan, pp. 125–145.

Reinventing care: a new era of networked health science @pash22 @Medici_Manager @helenbevan

by Leonard Kish

Technology, payment reform, and advancements in social and behavioral sciences are creating a perfect storm, leading to rapid acceleration in our understanding of how to improve health outcomes in a networked world, let’s call it “networked health science.”

Engagement is Relationships

Patient engagement is a key outgrowth of our understanding this new era. Providing realimprovements in cost and quality, patient engagement is rapidly becoming an accepted, if not integral, part of improving the U.S. Health Care System. Underscoring the meteoric rise of this new domain of understanding, the Health Affairs February issue is devoted to “The New Era of Patient Engagement.”

“Engagement” is a broad term that lies at the intersection between social science, behavioral science and technology. The essence is this: creating environments that allow people to stay focused on a goal while giving them the tools (often including social connections, information and communication) they need to achieve that goal. In terms of patient engagement, of course, the goal is better health.

The Center for Advancing Health describes patient engagement as “actions individuals must take to obtain the greatest benefit from the health care services available to them.” I think this definition falls short.

Patient engagement is often discussed in the context of technology used to enable action. When many people first hear about engagement in this context, the assumption is that the notion of relationships, such as doctor-patient relationships, are being somehow replaced by technology. But the idea is to enhance communication and, therefore, the relationship.

This is a critical distinction. The relationship is by no means secondary to achieving the goal. If you believe in the Fogg Behavior Model (a description of what is required to get an action to be taken or a behavior to change) we need to focus on both motivation and ability to get results and have people take action. The motivation comes from human connection, the ability comes from sharing information and improving communication.

Social science has shown that our real world and online social networks have a profound effect onour behavior. Actions, in terms of the Patient Engagement path defined by the Center for Advancing Health, are at the end of the engagement path, not the beginning. No patient is an island, and you can’t leave the network out of the equation, as we’ll soon see.

It’s not just about the provider.

When I wrote about engagement as the Blockbuster Drug of the Century, the examples I gave were in improving patient-physician communications. Often neglected in a fee-for-service health care universe, patient engagement with his or her provider is the area with perhaps the greatest room for improvement, but there are other relationships that can be improved with better engagement.

Excellent work by the research team at PatientsLikeMe indicate that patient-patient interactions can improve a patient’s perceived well-being. This suggests that engagement may soon be shown to improve outcomes along multiple dimensions: patient-to-patient, patient-to-physician, physician-to-physician, patient-to-care team, etc.

Writing about what an engagement “pill” might look like, Paul Wicks, Director of Research at PatientsLikeMe, shows the following graph from an epilepsy study.


The graph shows increasing numbers of connections on the PatientsLikeMe platform leads to increased perceived benefits by the patients across 20 different measures, appearing to plateau around 12 connections. If you’ve ever seen a dose-response curve of a medication, you’d find this graph to look incredibly familiar. Looking at these results, if the study of drug interactions is pharmacokinetics, perhaps we’ll need a new field of study called “communitikinetics”.

Is it the motivation or the ability that’s driving the change?

It’s both.

The number of Social Ties on the platform certainly helps with motivation and to stay on track. We’re beginning to see a similar effect with weight loss enabled by engagement on Twitter (hat tip: @EricTopol).

But the ability to enable patients with more information certainly matters as well. PatientsLikeMe invested early and often in user experience design (UX). Some of what came out of their investment in UX, separating them from from other communities, is the focus on data sharing and data visualization.

According to Wicks, “Every patient on PatientsLikeMe can see the complete health record of every other patient.” What PatientsLikeMe found during user experience design is that patients aren’t just looking for camaraderie and understanding, although that helps, they’re looking for actionable results.

Sharing results in this way makes them meaningful and provides digestible insights to lead toward what actions to take. But equally important, through the network of peers, they can have assistance in filtering what’s relevant for them. This is the essence of improved communication to achieve desired results. This study shows the importance of a patient’s network of engaged peers in addition to the technology that’s enabling that engagement.

The study also shows that effective data sharing is becoming a critical piece of engagement, communication and (I’ll be happy to wager) outcomes. As National Coordinator for Health IT Farzad Mostashari said at FutureMed last week, “We are just scratching the surface” of what information sharing can do.

Researchers and Data Sharing

At the same FutureMed, 16-year old cancer researcher Jack Andraka showed how he developed a pancreatic cancer test using carbon nanotubes and antibodies when he was 15.

How did a 15-year-old discover a new pancreatic cancer test? Much of Jack’s success is certainly attributable to his innate intelligence, hard work and persistence (he sent out letters to 200 labs before finally finding one that would let him do his research project), but he says none of this would have been possible without open access to journals that he read that gave him the foundation for the ideas he was able to test. Yes, we are, without a doubt, just scratching the surface of what information sharing can do.

Sometimes, it’s Still About the Provider

Ultimately, all this networked engagement and data sharing is attempting to match problems and solutions. The same is certainly true for physician sharing. That’s what Meaningful Use and payment reform are attempting to drive, but with the effect seen by patients, it may be worth exploring more deeply the notion of increasing communications not just from one doc to another, but within a community of physicians, taking advantage of some of the lessons learned by the designers at PatientsLikeMe.

At the VA and Kaiser, instances where information is networked and shared throughout the system, results suggest lower costs and better outcomes. Syndicom, which has a case-sharing platform for physicians to collaborate, claim they’ve seen better outcomes when physicians have collaborated in an online community. What will it take to redesign an EHR with these ideas in mind?

The Signal and the Noise of Engagement

Future research should explore the “right size” of sharing to get the best results. Too much sharing and too much connection within a network will likely result in diminishing returns, where noise overcomes the signal. This may have been what happened with 12 connections or more on PatientsLikeMe. More research will tell, but in the meantime, focusing on what needs to be exchanged and choosing the right number and quality of connections (as happens via social networks like Twitter) will help amplify the important signals while minimizing the noise.

For me, the groundbreaking part of all this is that by opening up data resources, we’re creating options. The community helps us hone these options to the one that best fits the circumstances (amplifying signal, reducing noise).

This development of options within a community must instruct our policy and our decisions about the future health care system.

As one example, tethered patient portals may help inform the patient, but unless that information can be shared with a community and recombined with other information to provide the right context, it’s of limited value.

The single entry to a portal diminishes the ability of the hospital to build the relationships and the network with outside providers and patients who are so critical to improving care, and ultimately, more patients to the hospital.

Any person in finance can tell you that options have value. We’re going to get very good at valuing options in healthcare over the coming years as these options, driven by sharing information and the ability to develop relationships across vast distances, improve outcomes.

In the words of Vince Kuraitis, many institutions will come around to the idea and the need to establish a program of “Strategic Openness” and sharing. It’s the building up of a community that leads to success, and it’s ultimately in each stakeholder’s own self-interest to help in building that community. As I hope I’ve shown, that will often mean engagement through data sharing.

Just ask the marketers during the Super Bowl, 50% of commercials provided Twitter information. Big companies have learned that community engagement matters. Let’s hope our care providers figure it out sooner rather than later, for their sake and ours.

Note: I’ve paraphrased Michael Nielsen’s phenomenal book, “Reinventing Discovery: A New Era of Networked Science” for my title on this post. We’re uncovering new ways online health care communities can improve health and outcomes, similar to the communities of online scientists he describes that are accelerating new discoveries in several fields.

leonardMore from Leonard Kish


The case for change slidepack @Medici_Manager @WRicciardi

Our Time to Think Differently programme has made the case for change and highlighted the trends that will influence the way health and social care is delivered in future.

To help you explore and share this work, we are creating a series of downloadable slidepacks. We hope that they will inform your thinking and discussions about the future of care.

The first pack in this series explores the pressures on the health and social care delivery system and why it needs to change to meet the challenges of the future.

You can download a powerpoint version of these slides here: The case for change slide pack. These slides cannot be edited in this format, but you can copy individual slides across to your own presentations. Please credit The King’s Fund if you use the slides elsewhere.

King’s Fund

Atul Gawande: Future of healthcare requires constant reinvention @Medici_Manager @muirgray

Atul Gawande,  MD, professor of surgery at Harvard Medical School and staff writer at The New Yorker, offered a reflective presentation earlier this month at Health Datapalooza IV, taking the audience back through what the healthcare system used to look like, and showing and how data innovations have helped set the stage for big transformations.

“There was a period in time where there was no analytics, no effort to look at the data, no effort to understand what was happening,” Gawande said. In his mind, healthcare is at least heading in the right direction.

Despite these innovations, all this progress and the potential power of big data, however, Gawande made sure to differentiate between technology and medicine – arguing that it was crucial to remember the human element.

[See also: Slideshow: Health Datapalooza IV.]

Gawande referenced Lewis Thomas, MD, who got through medical school by selling poetry and blood. Lewis went on to head Memorial Sloan-Kettering and eventually won a National Book Award for his essays.

Gawande cited one of Thomas’s essays in particular that would become the topic of his presentation, one titled, “Technology of Medicine.”

“What I love about it, is it looked at how we pay for technology in healthcare, what it goes for, but did it at a time where people really weren’t thinking about this,” Gawande said. “The opening you will love because it’s incredibly quaint. He says, ‘Somehow medicine, for all the $80-odd billion that it is said to cost the nation has not yet come in for much analytical treatment.’”

He added that Thomas “knew it was coming. He knew people would be here.” Gawande continued, “And then addressing himself to you, he said, ‘I wish you well, but I imagine you are having a bewildering time.’ The answer is, ‘Yes.’”

Gawande cited Thomas’s idea of three technologies. The first, non-technology, represents the supportive care that’s deployed in our current system – care for ailments like cirrhosis or multiple sclerosis.

[See also: ‘Data drunks’ and ‘dataholics’ unite.]

The second technology is complete technology. The polio vaccine is emblematic, Gawande said. Complete technology is a full solution for a particular disease.

The third technology – incomplete technology – is where innovation most needs to occur. These technologies are designed to manage the process of disease but not prevent it or reverse. He cited heart transplantations, chemotherapy and complex treatment for cardiac disease as examples. These technologies, Gawande explained, are both “highly sophisticated and highly primitive.”

There exist only a few examples of complete technologies. “The rest has not found its complete technology,” he added. “It’s squeezing out the rest of life and society. We’re experiencing growth again in our economy, but what often goes unmentioned is that although the healthcare costs have slowed down, if you look over the last decade, virtually all of the economic growth that has occurred has been shunted to paying for healthcare goods and services, with virtually no increases in investment in our infrastructure, in education and other core elements of what our future of this country will require.”

Gawande explained that the healthcare business has gone from the most primitive level of, ‘You ought to do X’ to the medieval period of standards and guidelines being developed, which transformed into, ‘You really ought to do X, and here are the guidelines on how to do it.’

He recalled when the Harvard standards came out, they finally outlined that anesthesiologists could not leave the room when with a patient, a common occurrence in the day.

“My dad was a surgeon in rural Ohio,” said Gawande. “He used to complain and come home shouting almost that the damn anesthesiologist left to go smoke a cigarette. When those Harvard guidelines got published, he came in waiving them at the anesthesiologist.”

Then came checklists and feedback loops both of which improved healthcare safety enormously. A pulse oximeter on the finger gave people the feedback loops to see, “Hey, you might have turned the oxygen down to zero. They’re not breathing.”

The next stage was the forcing function: Machines got made that prevented one from turning the oxygen to zero.

Modern quality, he continued, is a “combination of processed innovations like simple checklists and feedback loops, ways of knowing if you are making your way more successfully than you were before.” But, he said, that “still is not the future of what we can do.”

The future is innovation, Gawande said. It’s “the automation of the best possible ways of doing things while constantly reinventing them.”

The power of ideas and the ideas of power @Medici_Manager @muirgray @HarvardHSPH

Julio Frenk

“It would be naive to assume that decision-makers always base their decisions on objective evidence about the best means to achieve the desired ends. Often, such evidence is not available. Even when it is, the decision-maker, particularly in the public sector, must balance off the weight of evidence against the economic and political feasibility of following the desired course of action. While it is clear that decisions are made on the basis of many other forces apart from scientific information, it is also true that good evidence can steer those who have the power to decide into a better course of action. In other words, the power of ideas can help to shape the ideas of power.”

See the whole text:

How clinical commissioning groups are handling new responsibilities @Medici_Manager @muirgray

by Steve Kell

One hundred days have now passed since 1 April and the official birth of clinical commissioning groups (CCGs). As a GP and CCG chair it has been one of the most exciting, frustrating and meaningful periods of my career.

For most CCGs, delegated authority from primary care trust clusters, and therefore responsibility, had been in place for some time before April. However the process of authorisation and establishing organisations undoubtedly became a necessary distraction, with process and structure the focus.

Authorisation was essential to ensure we build robust, patient-focused organisations capable of fulfilling our statutory duties. CCGs were the only part of the new system to have been through this process, despite the number of new structures in the commissioning system. Since authorisation it has been good to get back to what we are here to do — commissioning health services and working with patients and practices to ensure we understand local services and their quality.

Bassetlaw CCG is a comparatively small CCG, with 12 practices and 112,000 patients in north Nottinghamshire. We have the same issues as many of our neighbours – high mortality and morbidity levels, areas of significant deprivation, obesity and substance misuse. We have a two-tier local authority system and we are members of Nottinghamshire health and wellbeing board. However, 90% of our patients use acute health services based in northern England – in South Yorkshire (including Bassetlaw hospital as part of Doncaster and Bassetlaw hospitals foundation trust).

Much of our time, therefore, is spent developing partnerships. Many of the commissioning organisations we work with are new, including NHS Englandpublic health teams and the health and wellbeing board. Practices and providers are important as pre-existing parts of the system, and have been essential in understanding our local health services and outcomes. We have built transparent relationships with our providers, openly discussing services, capacity and performance. We meet neighbouring CCGs regularly to discuss commissioning on a regional level such as cardiology services and networks.

Quality assurance forms a significant part of our role. Performance indicators and targets are a key part of this, but we have also reviewed issues raised by member practices and patients. Service development has been one of our most important work streams. It is essential that we seek continuous improvement in services for patients, and not simply monitor what we already have. GPs work closely with managers to improve pathways and we have successfully commissioned new musculoskeletal, dermatology, cardiac rehabilitation and community paediatric pathways for local patients.

As a CCG we have a strong sense of responsibility for our local population. Patient engagement is central to this. We have well established practice patient groups and groups within the CCG, and this role is led by our new lay member who has worked hard to ensure we have a new, meaningful approach. We have developed a series of summits with patients, carers and providers including extremely successful dementia and learning disability events.

We have a number of commissioning priorities as a CCG. Some, such as developing integration of services and pathways, have been enhanced by the development of an integrated care board chaired by the local authority. Some have arisen due to performance issues, such as A&E performance. We have worked closely with practices, visit A&E weekly and have commissioned increased capacity within the department and acute medical services with significant results. Targets are now being met and we have services with better access to senior staff over seven days and diagnostics.

There are significant challenges. Being allowed access to patient information is essential if we are to improve outcomes and commission effectively. Running cost, set at £25 per patient, is a blunt tool that does not take into account organisational size and fixed costs, or local health needs. CCGs, particularly those such as Bassetlaw, who have natural communities but are relatively small, are extremely lean organisations where clinical and managerial time is limited and we have learned to work as an efficient, effective team. It is essential that this is valued when we have assurance meetings and that reporting upwards does not distract us from our role.

We operate as just one part of a complex commissioning system. We need to ensure we are active partners alongside public health, regulators and NHS England, and that our clinical involvement and patient engagement lead to better outcomes.

After 100 days I’m optimistic. Clinical commissioning is delivering. The NHS needs it to succeed.

Dr Steve Kell is chair of Bassetlaw CCG and co-chair of NHS Clinical Commissioners Leadership Group

This article is published by Guardian Professional. Join the Healthcare Professionals Network to receive regular emails and exclusive offers.

Preventing excess @Medici_Manager @pash22 @helenbevan @muirgray

by Ray Moynihan

IN recent weeks the world’s leading medical journals have published articles about the overtreatment of mild hypertension, the risks of breast cancer overdiagnosis, and the lack of effectiveness and potential harms of general health checks.

As the studies of dangerous excess mount, so too does the effort to raise awareness about the problem. JAMA Internal Medicinenow has a regular “Less is more” feature, the BMJ has just launched its “Too much medicine”  campaign, and professional societies in the US are running the “Choosing wisely” initiative, highlighting overused tests and treatments.

In the field of mental health few could have missed the global fight over the DSM–5 and vociferous claims it will further fuel the medicalisation of normal life.

There’s little doubt that the market-based system in the US is the epicentre of excess — where health care now comprises almost one-fifth of the entire economy — but the problem affects many nations.

With breast cancer for example, estimates based on incidence studies suggest one-third of invasive cancers diagnosed by screening mammography in NSW may be overdiagnosed — in other words, the cancer would not have gone on to harm the woman.

The probable causes of overdiagnosis and overtreatment are complex — technological change, commercial gain, professional imperialism, fears of litigation, perverse incentives and our deep cultural faith in early detection. But despite the complexity and enormity of the challenge, it’s surely time to try to work out how we can wind back the harms of too much medicine.

A group of Australian researchers are a key driving force behind the first international scientific conference on overdiagnosis to be held in the US this September. The Dartmouth Institute for Health Policy and Clinical Practice is a logical host for the Preventing Overdiagnosis conference, with its proud history of medical scepticism and impeccable credentials on the dangers of too much medicine.

Resulting from a small meeting on Queensland’s Gold Coast last year, the conference is being run in partnership with the BMJ and one of the world’s most influential consumer organisations,Consumer Reports. It will feature 90 scientific presentations on the problem and its solutions, and keynote speakers include Dr Virginia Moyer, the chair of the US Preventive Services Task Force, Dr Allen Frances, chair of the DSM IV, and Dr Barry Kramer, a senior director at the National Cancer Institute, which has made overdiagnosis one of its research priorities.

Along with the research and the conferences, the time is ripe for a lot more discussion about what can be done in the clinic and the classroom, how we can communicate the counterintuitive message that less is sometimes more, and how we can develop and evaluate effective policy responses.

The aim, after all, is not just more meetings and peer-reviewed papers, but fewer healthy infants labelled unnecessarily with gastro-oesophageal reflux disease, less distress overdiagnosed as mental illness, and fewer of our elders assailed by out-of-control polypharmacy. The less we waste on unnecessary care, the more resources there are for those in genuine need.

Along with innovations in genetics and information technology, one of the exciting areas in medicine in the 21st century will be how to wind back unnecessary excess — safely and fairly.

Ray Moynihan is a senior research fellow and PhD student at Bond University, and co-organiser of the Preventing Overdiagnosis conference being held at Dartmouth, US, 10–12 September 2013.