Category Archives: Promozione della salute

Ora basta! Contrastare le bufale sui vaccini @drsilenzi

Andrea Silenzi su Facebook ha pubblicato un’ottima e sintetica presa di posizione per contrastare la diffusione di bufale sui vaccini. Eccola!

“Per chi, nonostante tutto quello che avete avuto modo di leggere in questi giorni sui giornali, ancora si chiedesse quale fosse la scientificità e autorevolezza alla base della pratica clinica dell’ormai ex medico radiato dall’Ordine dei Medici e Odontoiatri della provincia di Treviso, offro un esempio paradigmatico che sintetizza in poche righe l’infondatezza dei rimedi pubblicati sul sito web personale del predetto e ripresi anche nei social. Rimedi privi di qualsiasi fondamento a cui molti ignari pazienti (adulti e bambini) si affidavano (e forse ancora si affidano) come sempre ci si fida quando un medico – non una persona qualsiasi – consiglia qualcosa a qualcuno per il bene della propria salute.

È questa la cosa che, da medico, mi da più fastidio in questo come purtroppo in molti altri casi dove sono colleghi medici a farsi latori di teorie prive di evidenze scientifiche. Teorie che offuscano l’immagine della prevenzione vaccinale creando danni inimmaginabili fino a pochi anni fa: http://www.ansa.it/…/italy-becomes-us-travel-risk-for-measl….

Analizziamo, come esempio, i “consigli per prevenire le malattie invernali nei bambini”:

– Evitare il latte vaccino e i suoi derivati: questo consiglio è quasi obbligatorio per i bambini soggetti a forme catarrali delle prime vie aeree o a disturbi intestinali;
– Ridurre i cereali contenenti glutine e i loro derivati;
– facilitare il sonno nei bambini ….somministrando loro per tutto l’inverno anche la melatonina (2-3 mg la sera);
– Somministrare multivitaminici, ovviamente “naturali” – ma (cit.) “aggiungendo integratori (nutraceutici) a base di vitamina C (250-300 mg al giorno), vitamina D (800-1.000 unità al giorno), vitamina A (800-1.000 unità al giorno)” per tutto l’inverno;
– Somministrare multiminerali per tutto l’inverno, ma attenzione (cit.) “non è sufficiente un prodotto che contenga solo 8-10 minerali, perché nella nostra alimentazione mancano specialmente i microelementi, cioè i minerali in tracce. Consiglio allora di acquistare un multiminerale completo, come quello costituito da acqua di oceano adeguatamente purificata” (NB : 12 fiale di acqua di mare = costo 15 euro, consigliate 3 fiale al giorno nei bambini, 6 fiale al giorno negli adulti);
– Aggiungere prodotti a base di magnesio (150-200 mg al giorno) e zinco (10 mg al giorno) specialmente nei bambini più irrequieti e/o nervosi per tutto l’inverno;
– Somministrare probiotici tutti i giorni, per tutto l’inverno;

L’ex collega, infine, conclude dicendo (cit.) “non posso non ricordare che i consigli che ho dato andrebbero integrati anche con la terapia omeopatica, che svolge sicuramente una potente azione preventiva sia specifica che aspecifica nei confronti delle patologie infettive invernali”

Vieppiù che, non bastasse questa chiosa, il consiglio finale è che per saperne di più su come non far ammalare i bambini d’inverno, basta acquistare (cit.) “la mia pubblicazione più specifica”.

Tradotto: per non far venir l’influenza ad un bambino, i medici corrotti dalle aziende farmaceutiche somministrano un vaccino (costo 7-10€, una tantum), mentre quelli trasparenti e incorruttibili consigliano di spendere circa 50€ al giorno per 6 mesi /anno (9.000€, che se per caso hai due figli 18.000€).

Perché, si sa, le aziende che producono prodotti omeopatici, melatonina e nutraceutici vari sono dei gran benefattori.

Infine, il libro dell’ex collega (quello che il predetto chiama “pubblicazione” – forse per equipararlo, confondendo, a una pubblicazione scientifica?) per puro caso (veramente per puro caso) costa esattamente quanto il vaccino antiinfluenzale (10€) … ed è anch’esso un prodotto “una tantum”.

P.s. Se cercate informazioni corrette sulla salute, informazioni “anti-bufala”, rivolgetevi sempre a siti istituzionali e mai a siti di persone auto-emarginatisi per scelta dalla comunità scientifica internazionale.

P.p.s. Esiste poi la buona comunicazione online, dove si coniuga buona comunicazione con rigore scientifico e piena trasparenza con la comunità scientifica. È il caso di MedBunker di Salvo Di Grazia o delle pagine Roberto Burioni, Medico | VaccinarSì di Ulrike Schmidleithner e VaccinarSìdella SItI – Società Italiana di Igiene, Medicina Preventiva e Sanità Pubblica| IoVaccino | Rete Informazione Vaccini – RIV | Gavi, the Vaccine Alliance.
I “buoni” sanno essere anche “web-friendly”, insomma.
Fatene tesoro.”

 

A pediatrician gives vaccine advice to presidential candidates

A pediatrician gives vaccine advice to presidential candidates

 | CONDITIONS  

First, I’d like to thank you for taking the time to read this; I know you’re busy fund-raising and campaigning, so I’ll try to keep this brief. It’s recently become quite apparent that several of you have some misconceptions about our immunization program. That’s unfortunate for people who are seeking such a prominent position. I know science can be complicated, but public health is a pretty important topic. (It’s especially disappointing that the physicians among you don’t seem to fully understand this issue, but I suppose immunizations are outside your specific fields.)

Anyway, the following are a few brief facts about vaccines that I hope you will find useful in your next debate.

1. Vaccines do not cause autism. Numerous studies have demonstrated this, and a huge meta-analysis involving over 1.2 million children demonstrated that pretty clearly. Evidence doesn’t get any better than that.

2. The guy that started this whole autism/vaccine thing lost his license because of his fraudulent study, which has since been retracted.

3. “Too many, too soon” is not a thing. Children encounter many viruses and bacteria every day, and their immune systems are not overwhelmed. (And they don’t develop autism.)

4. Although a popular book about alternative vaccine schedules has been quite a hit, the guy that wrote it didn’t bother to prove that his schedule was effective or safer than the schedule developed by the most knowledgeable infectious disease experts in our great nation. He just made it up.

5. Spreading out immunizations has been shown not to reduce the risk of complications from vaccines. All it does is extend the time period during which children are at risk for these infections. And since the most significant risk of immunizations is driving to the office to get them, it creates some indirect risks as well.

6. While we obviously disagree about some of those points, I support your assertion that we shouldn’t bother immunizing against insignificant diseases. So I’ve narrowed the list down to the diseases that cause “death or crippling.” (The links are from the CDC, a government organization made up of people who know more than you do about infectious diseases. You should get to know them; they will work for one of you some day.)

7. Since you’re probably not familiar with the CDC vaccine schedule that you think people should avoid, I just listed every one of the vaccines it recommends. All of those diseases kill people. Fortunately, they don’t kill very many people anymore. (Because of vaccines.)

8. And since I know your world isn’t all about saving lives, vaccines save money, too. That might be a good talking point.

I could go into more details, and I’d be happy to speak to you personally if you’d like to hear more. In fact, there’s a huge network of pediatricians that would be happy to field the vaccine questions while you tend to your more important affairs. (We were actually going to talk to these families anyway, because their children are our patients.) But hopefully, this basic information has been enough to allow you to speak a little more intelligently about the topic–especially since one of you will be running our country.

But in the future, if you’re unsure about similarly complicated topics, please feel free admit your lack of knowledge and defer to the experts. That’s what real leaders do.

Chad Hayes is a pediatrician who blogs at his self-titled site, Chad Hayes, MD.

http://www.kevinmd.com/blog/2015/10/a-pediatrician-gives-vaccine-advice-to-presidential-candidates.html?utm_content=buffere6c81&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer

 

Basta attenzione solo alla struttura, lavoriamo sul cambiamento dei sistemi organizzativi e della cultura

Sir Muir Gray ci ha offerto un (apparentemente) semplice schema di interpretazione dei servizi sanitari: ognuno di essi è caratterizzato da una struttura (istituzionale, giuridica, economica, geografica, fisica), da sistemi organizzativi (idealmente impostati per realizzare le finalità dei servizi sanitari), dalla cultura (generale, professionale, organizzativa).

schermata-2016-09-24-alle-12-01-47

Dobbiamo riconoscere che in Italia, e in tutte le sue Regioni e Province autonome, l’unica modalità per introdurre un cambiamento dei servizi sanitari è quello di pensare a una riforma: cioè a un cambiamento della struttura (istituzionale, giuridica, economica, geografica, fisica). Nessuna attenzione, invece, viene dedicata alla necessità di cambiare i sistemi organizzativi e la cultura sottostante.

Il recente libro di Roberto Perotti (ex Commissario alla spending review) “Status quo” affronta il tema del “perché in Italia è così difficile cambiare le cose (e come cominciare a farlo)”.

Una frase, in particolare, mi ha colpito: “E’ proprio della mentalità giuridica attribuire importanza spropositata all’impianto istituzionale, compiacersi dell’eleganza formale e dell’equilibrismo di un compromesso, e immaginarsi che piccole variazioni a uno statuto possano portare benefici strutturali al paese. Se solo il mondo fosse così semplice…” (pag. 170).

Lavorare sui sistemi organizzativi e sui necessari cambiamenti culturali significherebbe “chinare la testa e lavorare” (R. Perotti, ibidem) sui problemi veri, sulla loro dimensione quantitativa e qualitativa, ipotizzare nuove soluzioni praticabili (socialmente e politicamente) e sostenibili (economicamente, professionalmente e culturalmente).

Certamente è più semplice fare una nuova legge, una nuova deliberazione, un nuovo atto aziendale pensando che un atto legislativo o amministrativo possano di per sé determinare il cambiamento.

Chissà se ce la faremo? Si dovrebbe cominciare smettendo di raccontarci bugie!

 

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

Walter Ricciardi http://bit.ly/19Urpbh

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.

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

http://abetternhs.wordpress.com/2012/04/09/whats-in-a-name/

Patient

“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.

IDEAS

  • 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.

References:

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 e3intelligence.com

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 mediahttp://sciencelife.uchospitals.edu/2012/02/16/filtering-the-flood-of-medical-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.

Smokers will be asked to quit before undergoing surgery under new medical guidelines @Medici_Manager

Grant McArthur http://bit.ly/13u5SXl

SMOKERS will be asked to quit before undergoing surgery and be referred for help while on waiting lists under new medical guidelines.

A strengthened smoking policy from the Australian and New Zealand College of Anaesthetists will require all elective surgery patients to be asked if they smoke, and for tobacco users to be given referrals to help them quit before their operations.

The policy will not give practitioners the power to delay or cancel surgery. But ANZCA president Dr Lindy Roberts said the guidelines would offer smokers the best chance to avoid life-threatening complications by providing them with support.

The hope is to convince and help smokers to quit four to six weeks before surgery, while they are already on the waiting list, which can greatly cut the risks of serious complications during recovery.

“Smokers are at greater risk of complications such as pneumonia, heart attacks and wound infections,” Dr Roberts said.

“When you are coming into hospital for something like an operation, it does provide you with an opportunity to think about your health more generally, and the benefits of giving up smoking for your health are in the longer term as well as relating to surgery and anaesthesia.

“It may be that when presented with the risks for a certain procedure that the surgery is delayed to allow somebody to improve their health prior to the surgery.

“From time to time a decision may be made between the anaesthetist, the surgeon and the patient to delay the surgery if there is something that can be improved to make them fitter for surgery.”

The move follows the success of a Frankston Hospital program in which all smokers entering the surgery waiting list were sent a quit pack – prompting 13 per cent to act and contact Quitline. Australian Medical Association Victorian president Victoria president Dr Stephen Parnis said the college’s quit-smoking stance was a positive move, balancing the need to advise patients without discriminating.

“This is not about banning people, this is about giving them the best chance to benefit,” Dr Parnis said. “When you weigh into account the procedure they need and their health, if there is a benefit to delaying the procedure then we would do that.”

Partnering with patients @Medici_Manager @bmj_latest

Fiona Godleeeditor, BMJ fgodlee@bmj.com

Last month we published a plea from Dave deBronkart (also known as e-Patient Dave) to “let patients help.” As a survivor of stage IV, grade 4 renal cell carcinoma, he described how the online patient community helped save his life (BMJ 2013;346:f1990). His aim is nothing less than to revolutionise the relationship between patients and healthcare providers. “Please,” he wrote, “let patients help improve healthcare. Let patients help steer our decisions, strategic and practical. Let patients help define what value in medicine is.”

This week we hear from another e-Patient, Kelly Young, who tells us why she became “a rheumatoid arthritis warrior” (doi:10.1136/bmj.f2901). Her blog,rawarrior.com, was born of the realisation that her doctors were stumped and that she needed to take responsibility for understanding her condition and deciding about her care. The blog now reaches nearly 2% of all patients with rheumatoid disease in the United States and, according to Young, is changing the way doctors as well as patients think about the disease.

The language of revolution and war may seem excessively violent, but it reflects the sense that even internet empowered patients feel they must fight to be heard, to get access to information, and to have their say in treatment decisions.

The BMJ is a journal for doctors. Over the years we have resisted the temptation to widen our sights to include patients among our target readership, although we know that many of our online readers are patients and members of the public. Despite its name, our series of Patient Journey articles is not designed for patients. As recently summarised by the BMJ’s patient editor, Peter Lapsley (BMJ 2013;346:f1988), these articles aim to give our medical readers new insights into patients’ experiences of illness and treatment in order to improve care.

But Young, deBronkart, and others like them are looking for something more than simply more empathetic doctors. They want partnership on an equal footing. And it’s this shift that the BMJ now wants to champion, working with colleagues at the Mayo clinic and others. As several of us ask in an Editorial this week, how better to improve care than to enlist the help of those whom the system is intended to serve?

Achieving such a partnership is a challenge. Years of paternalism have left doctors and patients unprepared for a different type of interaction. Time and other pressures may seem to justify current ways of working. But what if taking steps to bridge the divide between doctors and patients really did result in better, less costly, more effective care? There is a growing evidence base to suggest that it will. Ten years ago, we published a theme issue on partnering with patients (www.bmj.com/content/326/7402), and other articles published before and since are now gathered in a collection on bmj.com(www.bmj.com/bmj-series/shared-decision-making). To encourage further research and thinking in this area, the BMJ plans a call for papers for a conference and theme issue on participatory care next year. More information will follow shortly. Meanwhile, we are recruiting a panel of patients and doctors to help us think about how we can reflect the shift to patient partnership. I’d welcome your thoughts.

Cite this as: BMJ 2013;346:f3153

Resilience is critical for a healthy life @Medici_Manager @aringherosse @pash22

 | PHYSICIAN http://bit.ly/10N4QNI

It’s been reported that James Eagan Holmes, more infamously known as the movie-theatre gunman who killed 12 people during a midnight showing of Batman in Aurora, Colorado, sent a text to a classmate asking whether she knew what “dysphoric mania” was. (It is a bipolar condition that in its extremes, can include mania and paranoid delusions.) Did he have it?

Similarly we wonder whether a near-death accident in childhood, one that was marked by severe head trauma, affected Jeffrey T. Johnson, a.k.a. the Empire State Building gunman, so deeply that it influenced his decision to kill his former boss on his way into the office. Is that possible?

So often we focus on the mental conditions and environmental stressors that may have influenced the perpetrators of horrendous violence. Likewise, in the immediate aftermath of a horrific event—be it violence, an accident, or a devastating natural disaster—the media reports on the nightmares, sleeplessness, anxiety, and other classic sequelae experienced by the trauma survivors. Too rarely, though, do we explore the mental and emotional recovery of trauma survivors, and that of the family, friends, and colleagues who were affected by a victim’s death or lifelong disabilities.

Some 90 percent of us will experience at least one traumatic event during our lives, and no two of us will react or recover (if at all) in the same way. Resilient individuals who do recover typically employ one or more coping mechanisms to help them process the crisis and even become stronger for it. Drawing on social networks, emulating role models, and facing your fears are among the most successful strategies for fostering resilience in times of adversity.

Humans are biologically wired to bond with one another. Very few can “go it alone,” particularly during difficult times; emotional strength comes from close relationships with people who know you well or who can relate to the experience you had. And while today the term “social network” might bring to mind the landing page for Facebook or Google+, for one group of American prisoners of war in Vietnam, a life-saving network was as low-tech as taps against the prison walls.

The group mapped out the alphabet in a grid of five columns and five rows, and each letter was represented by a series of taps: first for the row (one tap meant row one) and then the column (three taps meant third column). Using this auditory alphabet, the so-called Tap Code, the group painstakingly spelled out messages to one another, offering one another information and plotting out resistance strategies. It was also an essential tool for preserving their sanity.

Indeed, one study of nearly 2,500 Vietnam veterans showed that those with low social supports—few friends or family members to rely on, or safety-net organizations to turn to—were over 2.5 times more likely to suffer from post-traumatic stress syndrome than those with high social supports.

Strong members of social networks may also become role models whose coping strategies are worth imitating. Imitation is one of the earliest and most powerful learning techniques we learn in life. While role models may be people we know personally, they can also be famous people, legendary members of our own family tree, or individuals we observe at a distance. Using imaging technology, scientists have found that when a role model performs a positive behavior, both the observer and the role model experience activity in the same region of the brain. Studies along these lines point to the possibility of mirror neurons that help facilitate social interactions by promoting shared understanding. Our brains are “turned on” by behaviors we deem impressive.

We might select some of our role models because they appear to be able to do something we cannot do, and that is facing our fears. Avoiding them—for example, never going to the movies again for fear of being shot—can greatly reduce your quality of life and sometimes your circle of support. Al DeAngelis is one individual who wasted no time in facing his fears. He and his friends went on their first-ever skydiving excursion on Memorial Day 1989. The rickety plane they were in became airborn and then made a crash landing in a nearby field. Miraculously, everyone on board survived. Most left the area to put the scene behind them, but DeAngelis joined the next skydiving plane and successfully faced his fears.

Not many people could do this so quickly and in such a dramatic fashion, and brain science indicates that it isn’t absolutely necessary to be so immediate. New memories are at first malleable before a synthesis of proteins encode them for long-term memory. Acting on instinct, DeAngelis took advantage of this period to alter the memory in its malleable state before it moved into long-term storage. This helped him get over his fear as soon as possible, but new research shows that even long-term memories can be altered. Every time the memory is recalled, a brief malleable period ensues and the memory could be updated and transformed.

While most of us will not experience trauma such as a plane crash, the Aurora shootout, or even extreme natural disasters, crisis can take many different forms, including long-term unemployment, chronic illness, homelessness, or divorce. Given the overwhelming odds that we will someday need to bounce back and move on, it is important to actively think about the importance of resilience even when everything appears to be going well.

Dennis S. Charney is the Anne and Joel Ehrenkranz Dean of Mount Sinai School of Medicine in New York City.  He is also coauthor, along with Steven M. Southwick, of Resilience:The Science of Mastering Life’s Greatest Challenges.  Cheryl De Jong-Lambert is a writer and editor.

Sette domande che ti farai alla fine della tua vita @Medici_Manager @silviogulizia

E se prendessimo un attimo per rispondere ora a queste domande? Giusto per cercare di arrivare in fondo con le risposte pronte, che in fondo per prepararsi a morire ci vuole una vita, ma a volte non hai a disposizione tutta la vita per prepararti.

  1. Sono orgoglioso di come ho vissuto?
  2. Cosa ho scoperto?
  3. Come ho sfruttato le opportunità che si sono presentate?
  4. Mi sono preso abbastanza responsabilità od ho lasciato correre troppo spesso?
  5. Che battaglie ho vinto per raggiungere i miei obiettivi?
  6. Quanto ho amato davvero?
  7. Quanta parte della mia storia l’ho scritta di mia mano?

http://bit.ly/Xj2Zp3

The case for slow medicine @Richard56 @Medici_Manager

The characteristics of health systems are complexity, uncertainty, opacity, poor measurement, variability in decision making, asymmetry of information, conflict of interest, and corruption. They are thus largely a black box and uncontrollable, said Gianfranco Domenighetti of the Università della Svizzera Italiana at a meeting in Bologna on La Sanità tra Ragione e passione (Health through reason and passion). The meeting was held to celebrate the life and work of Alessandro Liberati, the founder of the Italian Cochrane Centre, who died last year.

Only 11% of 3000 health interventions have good evidence to support them, said Domenighetti. A third of the activity in the US health system produces no benefit, said a recent study in the New England Journal of Medicine. Half of all angioplasties are unnecessary. Some €153m a day is lost through corruption in health systems in the European Union. Four fifths of new drugs are copies of old drugs. Screening is creating diseases like ductal carcinoma in situ. Most doctors (80-90%) have taken “bribes” from pharmaceutical companies, although many may not see their free pens and lunches and subsidised travel as bribes (but if they are not bribes what are they?). Between 15% and 40% of articles in medical journals are ghostwritten. Half of clinical trials are not published, and there is systematic bias towards positive results, hence suggesting that treatments, usually drugs, are more effective and safer than they actually are.

Yet against this backcloth more than four fifths of people in most countries think medicine is an “exact or almost exact science.” In a study published in the Annals of Internal Medicine nearly 90% of patients undergoing percutaneous coronary intervention (PCI) thought that it would reduce their chances of having a heart attack, when it doesn’t. Asked about various scenarios almost half of cardiologists questioned would go ahead with a PCI even when they believed there was no benefit to the patient.

It is time, said Domenighetti, to open up the black box of healthcare. Encouraging “health literacy” seems to be a way to do this, but Domenighetti thought that this was “old wine in new bottles.” We need, he said, to encourage a healthy skepticism about the medical market and to help people understand that medicine is far from being an exact science. Data should be published exposing variations in practice, corruption, and conflicts of interest. We should explain that health depends mostly on exogenous factors not the healthcare system. And people should be given practical tools to promote their autonomy—tools like access to evidence based information.

Domenghetti ended his talk by pointing people towards the Choosing Wisely campaign in the US where professional organisations are identifying interventions that offer little or no value. A similar but broader campaign of Slow Medicine is underway in Italy, and I have little doubt that slow medicine—like slow food and slow lovemaking—is the best kind of medicine for the 21st century.

We need to pull back from what Ivan Illich called the hubris of medicine.

http://bit.ly/WJMXyt

Richard Smith was the editor of the BMJ until 2004 and is director of the United Health Group’s chronic disease initiative.

Competing interest: RS spoke at the meeting and had his expenses paid by the health department of Emilia-Romagna.

OECD’s Gurria Says Austerity Versus Growth Is a False Dilemma @Medici_Manager @WRicciardi

By Mark Deen, http://bloom.bg/XZQAQ9

Angel Gurria, secretary general of the Organization for Economic Cooperation and Development, said policy makers in the euro area should push ahead with deficit cuts and avoid the “false dilemma” of the austerity debate.

“You need fiscal consolidation in many countries and at the same time you need to plant the seeds of future growth,” Gurria said today in an interview at the World Economic Forum in Davos, Switzerland. “Let’s go for the reforms, accelerate the reforms, so we can consolidate the recovery.”

The International Monetary Fund cut its growth forecast for the 17-nation euro area yesterday, predicting a second year of contraction as the region’s governments seek to reduce public borrowing and revamp their economies in the wake of a sovereign debt crisis. Gurria said that increasing flexibility of both labor and product markets is key to reviving growth.

“If you really want to go for a durable recovery, you really have to go for the fundamental measures,” Gurria said. “Some of these take a long time to get results but today, paradoxically, your best short-term policies may be your best long-term reforms. The announcement and communication of where you want to go may be your best bet.”

To contact the reporter on this story: Mark Deen in Paris at markdeen@bloomberg.net

To contact the editor responsible for this story: Craig Stirling at cstirling1@bloomberg.net

Continuity of care. Needed now more than ever. @Medici_Manager @nedwards_1

Abetternhs’s Blog

The political restructuring of the NHS is increasing the range of hospital and community health care providers[1]. This fragmentation of care risks what Michael Balint referred to as the “collusion of anonymity” in which different parts of the patient’s health are cared for by different specialists and consequently important aspects are neglected because they fall outside the specialist’s remit. [2] Consequently, now more than ever, a comprehensive, generalist primary care physician providing continuity of care, is essential.

Continuity of care is the care of an individual patient over time. Various attempts have been made to define continuity, many of which try break down comprehensive continuity of care into subsets of continuity, for example,informational, management and relational continuity.[3]

All subsets are essential components of patient care. Continuity of information on the electronic record and continuity of management through the use of shared guidelines and protocols get more attention because they are more easily assessed than relational continuity which is complex and difficult to measure. Relational continuity is the basis of the doctor-patient relationship and requires doctors and patients to understand each other’s personalities and remember past experiences and not simply recognise professional roles and clinical features. [4]

I  would define relational continuity as the therapeutic relationship between a doctor and a patient, developed over time in which the doctor takes responsibility for coordinating the patient’s care.

In measuring the effects of continuity of care, the question might not be, “Does continuity of care makea difference at a population level?” but rather, “Are there specific subpopulations for which continuity of care is especially valuable?”For most healthy, wealthy, young individuals, contact with aphysician is unlikely to have a measurable impact on their alreadygood health.[5]

Approximately 75% of all GP consultations are with people over the age of 70 and 75% of these people have multiple chronic conditions. In a deprived inner city environment where we work, the incidence of serious mental illnesses, drug and alcohol addiction and chronic stress due to social determinants such as unemployment, poor housing, crime and violence results in high re-attendance rates from a significant proportion of our practice population. For these people relational continuity is particularly important. [6]

Multiple conditions interact in ways that fall outside the remit of clinical guidelines.  For example deterioration in mental health or social stress may result in a patient with diabetes neglecting their diet and medication with a subsequent loss of diabetic and hypertensive control.  Regaining control of one disease is inextricably bound up with recognising and supporting them as they deal with the others. A frail patient with multiple problems may appear to a clinician with whom they have a relationship to look seriously unwell or their usual frail self the moment they walk through the consulting room door depending on their usual appearance and levels of stoicism or distress.

“The implicit choice between personal continuity and modern care is false; what evidence there is suggests that patients prefer services providing personal continuity, and this may also reduce the use of investigations and admissions to hospital”  [7] There is also evidence that improved continuity of care results in better preventative care and lower costs. [8] Other benefits include:

  1. Greater efficiency due to better communication and trust, facilitating information gathering.
  2. Increased safety because communication and awareness of subtle changes not included in the electronic record or clinical guidelines. Many critical incidents we have investigated involve lack of continuity and have resulted in changes to improve relational continuity.
  3. Higher patient satisfaction because of better reassurance and confidence in care. In patients with serious mental illness this is particularly important because the individual nature of the illness.

I believe that continuity of relationship is essential to organise and coordinate the increasingly fragmented care that patients receive. Continuity of relationship is most important in the care of patients with multiple chronic diseases, mental illnesses and social distress. These are the greatest users of the NHS. Prioritising speed of access and choice of provider risks damaging continuity of care for those who most need it.

Jonathon Tomlinson  October 7th 2009


See also: Boosting continuity of care could save millions Pulse 10.04.2012 (source link £)

[1] Our Health, Our Choice, Our Say. Department of Health White Paper 2006

[2] Balint, Michael. The Doctor, His Patient and The Illness. 1954

[3] Haggerty JL, Reid RJ, Freeman GK, Starfield B, Adair CE, McKendry R. Continuity of care: a multidisciplinary review. BMJ 2003;327:1219-21.

[4] Greenhalgh, Trisha. Narrative based medicine in an evidence based world.BMJ 1999;318:323-325 ( 30 January )

[5] Christakis, Dimitri A. Continuity of Care: Process or outcome? Annals of Family Medicine 1:131-133 (2003)

[6] Guthrie et.al Continuity matters. BMJ 2008; 377: a867

[7] Guthrie B, Wyke S. Does continuity in general practice really matter? BMJ.2000;321:734–736.

[8] Saultz, J. W., Lochner, J. (2005). Interpersonal Continuity of Care and Care Outcomes: A Critical Review. Ann Fam Med 3: 159-166

Defining and measuring interpersonal continuity of care.

Without patient participation, there is no patient engagement @Medici_Manager

 | TECH | NOVEMBER 22, 2012 http://www.kevinmd.com/blog/2012/11/patient-participation-patient-engagement.html

Healthcare innovation companies are just beginning to understand technology challenges that come with engaging patients with chronic diseases in care management and care transition. Many of healthcare IT vendors assumed that a simple access to portals with half-baked information and  fragmented medical records will do the trick. Boy… were they wrong!

For the past twenty years, the HIT industry has focused on developing software solutions exclusively for healthcare providers. These companies understand where the money comes from. HIT executives can tell you that patients will not spend a dime on their products. The great Google Health flop was testimonial to this hypothesis.  Google, and in some extent Microsoft, naively assumed that patients are indeed interested in managing their own health data. The executives in these brilliant companies sat around large tables in large conference rooms and brainstormed about a population they didn’t know much about. They made some very false assumptions.

For example, what patient wouldn’t like to access his/her data? Wouldn’t it be great if patients could have all their data in one place? Why wouldn’t we put patients in charge of managing their own data? How about making patients the custodians of their own information? These questions were logical but uninformed. Google, and again in some extent Microsoft, ignored some fundamental behavioral traits of the patient population.

Under pressure from CMS and private insurers, healthcare organizations are being gently ushered out of the fee-for-service model into the pay-for-performance system which rewards providers for keeping patients healthy and out of hospitals. Finally, after all these years, the concept of patient-centered care model is gaining ground. Patient engagement is big contributing factor to the success of the patient-centered care model. Patient engagement means different things to different people. But whatever your definition of patient engagement might be, one thing is for certain: without patient participation, there is no patient engagement.

Facing stage 2 Meaningful Use compliancy, ICD-10 and HIPAA 5010 requirements, healthcare organizations began to put pressure on their HIT vendors to come up with patient engagement solutions. Healthcare organizations needed solutions that would enable patients to access information online. This was a disaster waiting to happen. So, the executives in these HIT companies sat around large tables in large conference rooms and brainstormed about a population they didn’t know much about. And as a result, patient portals were adopted as the solution to the patient engagement problem. They made the same false assumptions that Google made. For example, why don’t we create patient portals and connect them to our own EMR and PM systems and allow patients to access their medical records, see their lab results, make appointments online, request refills and access patient education materials? Wouldn’t that be greater? We even throw in a mobile app.

Well, here is the problem: small number of patients has access to computers and Internet. Many of these patients will not login to portals. Patients who are computer savvy require the least amount of engagement and intervention. Computer literate patients take good care of themselves, take their medications on time, make their appointments and stay out of hospitals.

Patient portals leave behind those who need engagement the most. Elderly and low-income patients with chronic diseases have the highest rate of hospital readmissions. This patient population will not touch patient portals. They do not use gadgets, do not have access to smart phones, do not have internet and do not own computers. The same is true for many behavioral health patients.  If accessing information through patient portals is our only solution to patient engagement, then shame on us.

Elderly and low-income patients are the most venerable and often left behind when it comes to the use of technology in healthcare. As HIT innovators, it is our outmost responsibility to design products that especially accommodate this patient population. We need to walk away from the concept of accessing information and start thinking about ways to deliver information and education to patients. In addition to patient portals, we must develop products that are simple, cost effective, holistic and easily available to elderly and the low-income patients. We must develop multifaceted technology solutions that connect with patients based on the best method of communication available to the patient. Our patient engagement strategy must be built on patients’ requirements, not ours. The success of the patient-centered care model on the technology side depends heavily on availability of solutions that cover patients from all walks of life without any unintentional favoritism towards certain race, gender, income and age.

Mack Baniameri is CEO, Health Business Intelligence Corp.

La Sanità di Iniziativa attraverso gli occhi dei pazienti @Medici_Manager

Anna Maria Murante, Laboratorio Management e Sanità della Scuola Superiore Sant’Anna di Pisa.

http://www.saluteinternazionale.info/2012/11/la-sanita-di-iniziativa-attraverso-gli-occhi-dei-pazienti/

I risultati dell’applicazione del Chronic Care Model in Toscana.  Il 73 % dei pazienti dichiara che l’assistenza complessiva è migliorata e ora è in grado di gestire meglio la propria malattia. Il 67% dei pazienti dichiara che il suo stato di salute è migliorato.


Era il 1997 quando Edward Wagner portava la comunità scientifica a riflettere sui principali ostacoli che i sistemi sanitari incontrano nel dare risposta ai bisogni dei pazienti cronici, sui punti di forza e debolezza dei numerosi approcci assistenziali in uso in quegli anni e sugli effetti che le strategie adottate hanno sui pazienti cronici[1]. Dal dibattito che ne scaturì prese a delinearsi negli USA una nuova idea di assistenza per i pazienti cronici, poi tradotta nel modello organizzativo-assistenziale oggi noto a tutti come il Chronic Care Model. Un modello che ha nel self-managementdecision supportdelivery system design e clinical information system le sue principali componenti (Figura 1), e la cui implementazione dimostra sin da subito di poter assicurare migliori risultati in termini di processo e di outcome, oltreché una riduzione dei costi e degli accessi inappropriati ai servizi[2,3]. Questo modello viene presto esportato oltre oceano, arrivando ad essere applicato anche in alcune regioni italiane come la Toscana.

Figura 1. Il Chronic Care Model

Cliccare sull’immagine per ingrandirla

Con il Piano Sanitario Regionale 2008-2010 la Regione Toscana pone infatti le basi per un rinnovamento organizzativo e culturale che segna un cambio di rotta nell’assistenza dei pazienti cronici, definendo la strategia per il prossimo futuro: passare da una medicina d’attesa, re-attiva e pensata per i pazienti in fase acuta, ad una sanità che – basandosi sul modello del Chronic Care Model (vedi Assistere le persone con condizioni croniche) – va incontro al paziente, in maniera pro-attiva e programmata per «[…] assumere il bisogno di salute prima che la malattia cronica insorga, si manifesti o si aggravi […]». Nasce così la Sanità di Iniziativa, che muove i suoi primi passi nel 2010, quando 627 medici di famiglia, organizzati in 56 moduli multiprofessionali (composti oltre che dai medici di famiglia, anche da infermieri e operatori socio sanitari), aderiscono alla fase pilota del progetto (attualmente i medici che aderiscono al progetto sono oltre mille, circa il 38 % del totale dei mmg toscani). A livello regionale vengono definiti obiettivi chiari tanto per i moduli, il cui raggiungimento è monitorato con un set di indicatori (DGR 355 del 22/03/2010), che per i direttori generali delle aziende sanitarie, che a questi vedono legati una quota percentuale degli incentivi annuali.

I risultati che si ottengono dall’attività di monitoraggio sul processo e sugli outcome sulla base dei dati forniti direttamente dai moduli (che alimentano gli indicatori sopra citati) e sulla base della banca dati MaCro dell’Agenzia sanitaria regionale (ARS Toscana), da quest’anno sono completati dai risultati sull’esperienza dei pazienti presi in carico.

Tra febbraio e luglio 2012 è stata infatti condotta un’indagine telefonica (secondo la metodologiaComputer Assisted Telephone Interviewing) tra i pazienti presi in carico dai moduli della fase pilota della Sanità di Iniziativa. Un campione di circa 6500 pazienti, diabetici e scompensati, ha risposto al questionario costruito dai ricercatori del Laboratorio Management e Sanità della Scuola Superiore Sant’Anna di Pisa con il supporto di un panel di esperti a livello nazionale ed internazionale e approvato dalla Commissione Regionale CORMAS. Il questionario è strutturato in 7 sezioni: la fase di reclutamento, le visite di controllo, gli incontri di counselling, gli aspetti logistici, le visite specialistiche, il coordinamento tra le figure professionali e una valutazione complessiva in termini di informazione, empowerment, assistenza e benefici per lo stato di salute.

Il 72% dei pazienti intervistati ha più di 65 anni, soffre di diabete o di scompenso cardiaco in media da circa 11 anni.

I pazienti hanno accettato di essere assistiti secondo il nuovo paradigma assistenziale soprattutto perché hanno fiducia nel medico di famiglia che glielo ha proposto e perché desiderano avere un punto di riferimento nella gestione della malattia cronica. Hanno un minor peso in questa decisione l’auspicio di ottenere dei benefici in termini di salute o di migliorare la gestione della malattia. La presa in carico ha quindi un peso importante nelle scelte assistenziali dei pazienti cronici.

La pro-attività dei moduli nell’attività di follow up è buona, confermando che la sanità d’iniziativa «non aspetta sulla soglia dei servizi il cittadino» (PSR 2008-2010), ma va loro incontro,  ad esempio contattando i pazienti prima della visita di controllo per ricordare o fissare la data dell’appuntamento (è quello che accade al 73% dei pazienti intervistati).

Durante le visite di controllo l’infermiere del modulo lavora per aumentare l’empowerment del paziente, in primis attraverso un’educazione volta ad intervenire sugli stili di vita, e il paziente sembra apprezzare. Le informazioni fornite su una sana alimentazione,sull’attività fisica, sul consumo di alcolici e sul fumo (Figura 2) soddisfa infatti la quasi totalità dei pazienti (97%), e porta il 67% dei pazienti a dichiarare di sentirsi più informato sulla propria malattia cronica.

Figura 2. Le informazioni che il paziente riceve durante le visite di controllo

Cliccare sull’immagine per ingrandirla

Rispetto al monitoraggio dello stato di salute dei pazienti, emerge che la misurazione della pressione e della glicemia (o la verifica dei valori registrati a casa), e della circonferenza della vita (o del peso corporeo) avvengono regolarmente, mentre non è ancora una prassi il controllo del piede (Figura 3).

Figura 3. Le attività di follow up svolte durante le visite di controllo.

Cliccare sull’immagine per ingrandirla

Sono davvero pochi (9%) i pazienti che dopo aver incontrato l’infermiere si rivolgono al medico di famiglia per chiedere conferma o spiegazioni. Alla base di quest’ultimo risultato c’è sicuramente la completa fiducia che l’88% dei pazienti nutre nell’infermiere. Inoltre, il team composto dal medico di famiglia e dall’infermiere riceve valutazioni molto positive, soprattutto quando si parla di lavoro di squadra ( 91 volte su 100 è ottimo o buono). Il paziente dunque non ha alcun pregiudizio rispetto al ruolo assegnato all’infermiere nella gestione del proprio percorso assistenziale e risponde positivamente al cambiamento organizzativo, e al tempo stesso culturale, posto in atto dalla Regione Toscana con la Sanità di Iniziativa.

La pro-attività del sistema è invece ancora poco strutturata quando il paziente ha bisogno di una visita specialistica. La prenotazione della visita il più delle volte viene fatta dal paziente o da un suo parente/amico attraverso il CUP, e solo poche volte è realizzata dal personale del modulo (15%). La figura dello specialista è ancora collocata fisicamente fuori dall’ambulatorio della sanità di iniziativa, se non in rari casi. Questi elementi identificano certamente degli ampi spazi di miglioramento su cui intervenire nella costruzione di un solida ed efficace continuità assistenziale.

Per finire, la rilevazione condotta tra i pazienti ha permesso di ottenere le prime valutazioni sull’efficacia della Sanità di Iniziativa in Toscana, direttamente dai pazienti. Il 73 % dei pazienti dichiara che l’assistenza complessiva è migliorata e ora è in grado di gestire meglio la propria malattia. Un altro risultato importantissimo in termini di outcome segnala che questa nuova modalità di presa in carico produce dei benefici sullo stato di salute dei pazienti nel 67% degli intervistati, vedi Figure 4 e 5.

Figura 4. Le valutazioni dei pazienti sul miglioramento dell’assistenza

Cliccare sull’immagine per ingrandirla

Figura 5. Un risultato di outcome: l’impatto della Sanità di iniziativa sulla salute dei pazienti.

Cliccare sull’immagine per ingrandirla

La rilevazione condotta in Regione Toscana conferma dunque i risultati presenti in letteratura sull’efficacia del Chronic Care Model, e fornisce alla governance regionale e agli operatori impegnati sul campo informazioni utili sugli ambiti in cui la presa in carico può essere ancora migliorata.

Bibliografia

  1. Wagner, Managed Care and Chronic Illness: Health Services Research Needs, Health Services Research, 1997; 32(5): 702-714.
  2. Bodenheimer et al, Improving Primary care for Patients with Chronic illness: the chronic care model, Part 2, JAMA, 2002; 208: 1909-1914.
  3. Coleman et al, Evidence On The Chronic Care Model In The New Millennium, Health Affairs, 2009; 28(1):75-85.

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WHO: Climate change and human health @BertolliniR @Medici_Manager

Atlas of health and climate

The Atlas of health and climate is a product of this unique collaboration between the meteorological and public health communities. It provides sound scientific information on the connections between weather and climate and major health challenges. These range from diseases of poverty to emergencies arising from extreme weather events and disease outbreaks. They also include environmental degradation, the increasing prevalence of noncommunicable diseases and the universal trend of demographic ageing.

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