torsdag den 15. juni 2017

Global health in an open world requires an open mind


Blog on global health in an open world on the occasion of the Niels Bohr jubilee 2014

Science does not exist in vacuum and science does not have a life of its own. Science has a history and has always been part of history. Science does not believe in creationism. Or does it? Global health science seems to be wondering about in its own echo chamber biting its own tail repeatedly trying to recreate itself regardless of its own history and ignoring the real world context of global health. It took 186 years from the discovery of the Smallpox vaccine to the eradication of the disease; it took only 20 years from the onset of the global HIV epidemic to create a global HIV disaster caused by ignorance, negligence, political correctness, religious considerations and lobbying, epidemic stigma and counterproductive politically governed control measures. Governments have had to interpose themselves into controversies of sex, injected drugs, and other taboos in public media. Even the WHO has had trouble confronting such realities. The slow and inadequate international response to HIV/AIDS may have accelerated the epidemic and made it more severe. And some have argued that over-emphasized individual rights against public good, was not the best approach for Africa, as Africa’s society is based on community/group understandings and is not as individualistic as the European or North American societies. The timing of the HIV/AIDS epidemic is also an ignored historic fact. In addition, combating AIDS requires costly change in economies and national cultures. The concurrence of the HIV epidemic with the collapse of the hospital care system in Africa contributed to the disaster and later famines in southern Africa in 2001-2003 and the explosion in food prices in 2009 have sparked a second HIV epidemic – this time among single mothers striving to pay newly imposed school fees and user fees for simple health care [1, 2]. Some are waiting for the vaccine “fix” or the wonder drug for HIV – but given the history of Smallpox it will probably take 186 years from now if the world doesn’t open its mind both to history and to reality. AIDS is not a fashionable subject anymore but the story of HIV/AIDS is a lesson to global health decision makers. Rephrasing Elisabeth Pisani: whores have wisdom, and we had better open our minds and face it [3].

But why global health? Well, health has never been more clearly global than now. Social media have reorganized our way of talking, discussing and interacting globally by spreading happiness, hate speech, obesity and knowledge at the same time. Diseases have never had respect for border control. Polio has suddenly re-emerged in Syria, measles is popping up all over Europe, West Nile fever came from Uganda to USA and is raging in Texas, Dengue and yellow fever threatens to spread to new areas of Europe and the southern states of USA, patients with extremely drug resistant TB have been travelling freely across Europe and the Atlantic ocean within 8 hours, epidemics of diabetes are seen in China, India, Africa and among the poor in Europe and the US and antibiotic resistance is caused by the food industry and spread by humans and food. But looking at the causes behind the current resurgence of polio in Israel, Britain, Eastern Europe and Nigeria there are quite unique and independent global causes to this viral proxy for chaos: The Israeli strain came from Egypt that got it from Pakistan, in Nigeria it is caused by Muslim groups in the North that reject child vaccinations, while Eastern Europe faces the consequences of a collapsing health care system combined with a heavy migration load. But digging deeper into the Nigerian Polio dilemma the immunization crisis is best understood after considering developments in the broader politico-religious contexts, both local and global. The controversy as a whole should be understood against the background of the deepening interface between health and politics. In that view the crisis is best seen as originating from a lack of trust in social interaction between ordinary citizens and the Nigerian state on the one hand, and between the same citizens and international health agencies and pharmaceutical companies on the other. The analysis of trust shows that it is a historically embedded crises and illuminates the historical dynamics of relations among the identified actors – not just Muslims rejecting immunization[4]. Some global threats spread by the means of mosquitoes, parasites and viruses, others by transmitting genetic resistance and yet others spread by behavior and living conditions. We have never been a more connected globe, for better and for worse. We can learn from these tendencies if we can see these disease outbreaks in context – as not so much isolated risks we can ‘contain’ but as symptoms of an ever-changing, ever challenged, system. The interesting point is that global health lessons have always been there  – history can teach us how to tackle global health – but our failure to take existing experience into account has made us reinvent the global health wheel once a year.

To understand global health and the potentials for solutions to world health problems we need to understand the basics of health, health care and decision making in global health. We also need to understand that major players in global health, such as social determinants of health, are not taken serious. But social determinants of health are like a 600 pound gorilla in the room: it fills out the global health space and it keeps staring at us while we can’t figure out how and when it is going to attack us. An open mind is useful in global health where global cognitive short cuts, convenient moral codes, shifting fashions in politics, vague national security arguments and a million religious minority interests so far have taken over where common sense, scientific facts and principles of equity were in fact initially in command. Global health discussions were open minded and innovative in the years up to the Millenium Development Goals for 2015 and retained an innovative momentum up to 2008 when the Global Forum for Health died out. The scene was taken over by large independent donors, The World Bank and large international NGOs and cross disciplinarity, equity, innovation and research based interventions vanished from the scene. The analysis of the abolishment of one of the top 5 killers in low income countries, user fees, is a painful but necessary example of admitting that history can help us improve future global health intervention if we test what we want to do before we introduce it on a global scale [5].

The diversity and scope of global health is rapidly expanding. From evolving individualized personalized medicine based on genetics over epigenetics claiming that a grandmothers birth weight determines the grand children's birth weight, to an epidemic of female obesity in exploding cities of low income countries and to deadly epidemics of measles because there is no funding for that particular vaccine or polio epidemics because religious groups and minorities in Africa, Asia and Europe, for different reasons, refuse to have their children vaccinated.

Increased concern about global health has focused attention on governance questions, and calls for new governance architecture for global health have appeared. Global health diplomacy is a relatively new field in global health. Health has emerged as an important foreign policy issue but has at the same time de-masked that health was previously deliberately separated from foreign policy – instead health was seen as something between charity and an international moral necessity. Global health threats have forced foreign policy makers to re-think how they see national security threats. Nowhere is this more visible than in the relationship between public health and national security. Whether discussing biological terrorism, HIV/AIDS  or pandemic influenza, foreign policy makers and public health experts have increasingly outlined certain health threats as security challenges. Without question, the major powers of the international system have driven this process with their national interests in mind, which worries many of those involved in protecting and promoting health [6]. Some governments have taken determined steps to incorporate health as a foreign policy tool. But maybe it’s the opposite that is happening as Illona Kickbusch noted in 2007: foreign policy is now being driven substantially by health to protect national security, free trade and economic advancement [7]. The world of global health diplomacy is quite dynamic at the moment, with new partners setting trends while traditional actors are re-configuring their views and practices [8]. A whole range of middle income countries recently emerged from a low income situation and they have, with individual backgrounds and different goals, entered the global health scene. Some of these countries have very recent experiences in receiving foreign aid and now find themselves on the other side of the table. Some of these countries (Such as Mexico, Brazil or South Korea) challenge the good old boys around the table disrupting their “old school” thinking. Furthermore each of the newcomers have developed their own “middle power” focuses on global health, often filling some of the huge gaps that the old donor countries have left in global health.

Global health management faces a new problem, by Fidler called “open-source anarchy.” The forces of open-source anarchy means that States, NGOs and large donors resist global power structure reforms that would limit their freedom of action. Gates foundation for example scores very poor on the aid transparency index 2013 [9]. In this context, what is emerging is not governance architecture but a normative “source code” that States, international organizations, and non-State actors apply in addressing global health problems. The source code’s application reveals deficiencies in national public health governance capabilities, deficiencies that are difficult to address in conditions of open-source anarchy. Governance initiatives on global health are therefore disclosed as weak, powerless and vulnerable [10]. The

Unwillingly we have introduced inequity in global health because one of the key elements is to work for equal global access to new research and technologies. By doing this instead of focusing on what is really needed we have forced low income countries without resources for scientific evaluation to expand the topics they have to deal with instead of assisting in solving the topics they are already struggling with.

Furthermore a range of the interventions that high income countries, often for selfish reasons, have imposed on LIC have had serious long term repercussions. User fees, immunization campaigns with no - or harmful effects, decentralization, withdrawing funding for health care and replacing it with administrative funding all have had unexpected and disrupting long term effects[11]. Now international donors have drawn the carpet under many health programs by suddenly defining circumcision of men or HPV vaccination of girls as the new large scale interventions together while at the same time only 40 % of HIV positives in LIC cities are on anti-retroviral therapy for their HIV infection (nobody wants data from non-urban areas) and condoms are never to be found in the right place at the right time, even though the condom was invented in 1564 over 400 years ago [12]. The narrow and exclusive focus on investments in Primary Health Care in LIC from 1980 has left complete health care systems without functional referral levels above health centers because of a chronically underfinanced hence collapsed hospital sector and has left the bill to be paid by the poorest patients in most need of public hospital care [13]. So now the international community is forced to invest in hospitals that essentially aren’t really functional hospitals anymore– but we, the high income countries – actually created that problem ourselves [14]. An often ignored historic fact is that the HIV epidemic spread most rapidly in the 1990s when Africa suffered an economic decline, when the health care services were falling apart (partly due to Structural Adjustment Programs of the World Bank) and when attention by health officials was on other health priorities such as Unicef’s Extended Program of Immunization (EPI).

During the past decade, the explosion in global health activities by governments, international institutions, multinational corporations and nongovernmental organizations is extraordinary and shows the conversion of health as a national and global political struggle [15]. Commentators have, however, begun to warn of the adverse implications of so many players engaging in so many health efforts in so many parts of the world. All this activity is producing what can be called two tragedies of the global health commons. This dynamic is producing a global health version of the "tragedy of the commons" as actors' rational, self-interested calculations generate over-exploitation of the global health commons[16]. Critical parts of the global health commons, particularly developing and least-developed countries, cannot adequately support the ongoing proliferation of activities, which tend to fragment already fragile local and national capacities for public health and health care.

But the global health commons experiences as well the tragedy of under-exploitation. Critical health issues such as women's health, the global spread of non-communicable diseases and the building of broad-based local and national public health capacities, receive insufficient attention and suffer from the fragmentation of public health and health-care systems caused by proliferating yet uncoordinated public and private health initiatives. In fact WHO in a report from 2013 WHO highlighted violence against women as a ‘global health problem of epidemic proportions’ – yet no global measures to control the epidemic were launched. Examples of other unsolved controversies and disputes in global health are:

·         Falsified, Substandard and Counterfeit Medicines: Public health or intellectual property rights issues? Counterfeit, falsified and substandard medicines pose a considerable threat to health security. They can fail to cure, promote antimicrobial resistance or cause injury and death. The threat posed by such medicines is growing, particularly in poorer countries with weak regulatory mechanisms and poorly monitored distribution networks. Poor patients in developing countries, who usually have to procure medicines with their own resources, are particularly vulnerable.

·         Corruption in health care is a serious threat to health governance, undermining quality and availability of services, especially for the poor. Although no country is immune, citizens in poorer countries are more likely to experience corruption when they interact with public officials, and the effects of corruption on their health and welfare are exacerbated.

·         With more than a billion smokers worldwide, tobacco is mankind’s most widespread serious health hazard, and among its most contagious. It is therefore quite naturally that the tobacco industry is often compared to an infectious disease vector. The tobacco industries manipulate scientific evidence on the risks of tobacco and undermine research findings

·         Controversies in migration and international health. There are over 12 million undocumented migrants in the world. Their right to human rights is challenged and their access to health care has been hampered by failure to accept their existence while at the same time countries depend on their labour.

·         Food companies have contributed to the development of a food system that now provides adequate and safe food to billions of people worldwide. However nutrition crises related to over- and under- nutrition and exploding food prices remain common and urbanization is closely related to changes in eating patterns and physical activity.

·         Uncontrolled and rapid urbanization creates breeding grounds for poverty, diseases of poverty, break down of public administration, lack of schools and sanitation, human insecurity and rapid increases in non-communicable diseases. This was not a development that started yesterday but decision makers have failed to monitor, accept and act on the epidemic of urbanization.

·         Humanitarian Action- Security and Military intervention: Humanitarian interventions are increasingly politicized and militarized. The deteriorated security situation for humanitarian workers in many crisis zones, as well as the political discussions about terrorism and counter terrorism strategies developed after 9/11 (the Global War on Terror), have led to increasing militarization of many humanitarian fields. Militarization of aid as well as counter-terrorist interventions backed with humanitarian activities in order to win the “hearts and minds” of the population has contributed to blurring the lines between combatants and non-combatants. These developments have had considerable impact on the ability of humanitarian organizations to genuinely provide aid to populations in dire need, within a strictly humanitarian assistance framework. In addition, aid recipients’ perception of humanitarian actors has been affected.

·         Single disease funding. General Health System Management in the Context of PEPFAR and the Global Fund Overview: Alignment/coordination of resource flows to maintain efficiency and support for PHC services. Major investments being made through international grant making mechanisms such as PEPFAR, PMI, GFATM, GAVI that, in some circumstances, can create distortions and coordination problems in managing human and material resource flows to assure broad access to an integrated package of health services. If half of a financial resource flow for health in a country is focused on HIV/AIDS, how can the policy leaders assure that the whole health system is re-inforced. Plenty of global health experts think that fighting a single disease is inefficient. It doesn’t build the capacity of the health system as a whole, and it can distort the entire health sector. Health care providers and services are pulled into the area where there is money. If all your doctors are treating tuberculosis, who takes care of the children with pneumonia?

So to re-invent global health we have to re-analyze and learn from global history:

OBSERVATION
CONSEQUENCES and IMPLICATIONS
Getting history right
 
Global health interventions are never really tested yet introduced at global level with unexpected and uncontrolled health effects
The following is examples of interventions with geographically limited or no evidence before introduction: decentralization and privatization of health care, user fees, childhood immunizations, male circumcision, Vertical ARV programs and their vulnerable funding structure
Governments, ministries, organizations have no memory and don’t collect experience systematically
The very organization that introduced and forced user fees to be introduced in LIC was the organization to take credit for “saving” LIC from the effects of user fees by introducing a new program to replace it: “Universal health coverage”. This program still hasn’t demonstrated that I can increase equity while user fees have now become a “right” for health workers and way of supplementing their often missing salary payments
Diseases and health problems lose their international X-factor regardless of importance. Some interventions are just too boring and simple
Diseases like diarrhea and measles their solutions (soap and immunization) are tedious and have been around for so long that politicians think they are almost eradicated. Traffic accidents, among the top 5 causes of death worldwide has no sex appeal and no attraction in terms of a solution.
Global health does not exist in a vacuum
It was not science alone that discouraged smoking by providing evidence for the risk of lung cancer. It took over 7,000 studies, all showing the same association, and 20 years of time, before decision makers in health dared to say in public that smoking causes cancer.
Getting the picture right
 
Issues of wealthy NGOs, ethics, gender, religion, national security and environmental issues are heard through established institutions, boards and lobby organizations.
But issues regarding equity and transparent and sensible agendas for research have no voice. Research priorities and how to secure that good research is implemented into practice has no interest organization behind it any longer.
 
The global health agenda is biased towards the agendas of wealthy and powerful organizations that do not necessarily feel obliged to follow needs of recipient countries or to listen to scientific evidence. They are not part of a global policy process but define their own goals and means.
Decisions regarding child health are made on what funders want to fund, not what really works or what is needed. Polio immunization is a donor darling while measles immunization, treatment of diarrhea and pneumonia is not.
Individual or minority human health security is not defended.
Research in health disparities interventions tends to be oriented towards the individual and how social determinants and behavioral factors affect the individual. In fact this has spilled over into intervention research where a recent review of 30 years of health disparities research found that 90.5 % of all research has been focused on patient interventions or interventions aimed at the patient’s community. Only 9 % of research was aimed at changing the organization of the health care sector to a more equity based focus or at increasing equity competencies among health care professionals [17].
Favouritism in health care, unofficial user fees, fake drugs and corruption, educational disparity in care are poverty boosters that reinforce the effects of being poor [5, 18, 19]. The clinical outcome of tuberculosis treatment depends on social determinants via lower quality of care [20].
The blind spots in global health
 
Some diseases and their interventions suffer from “donor fatigue” in spite of their continuing deadly effects on child survival.
“Cooperative countries” get more funding – other countries are termed “fragile states”.
Innovation is increasingly being interpreted as “technological fixes”.
Problems that are not easily solved are not subject to global health interest. Some problems are simply regarded as too big for global health – or realistically beyond the reach of global control.
What is funded changes on a yearly basis with new policies, new governments and new fashions. Recipient countries are defenseless – if they don’t comply they don’t get funding or risk depending on compassion, charity or funding for national security reasons instead of for health problems.
Research funding has shifted from competence development of health workers to ehealth and mhealth technology. Technology doesn’t solve the problems in lacking skills and increasing inequity.
If migrants around the world lived in the same country they would be the 5th largest country in the world, yet the fact that migrant populations are vulnerable populations has not led to a global health focus on this immense challenge.
Traffic injuries are a result of an activity that is regarded as the ultimate individual freedom, hence a right that ranks above global public health.
Being born female is dangerous to your health and is more dangerous than being a soldier at war [21].
International tourism has exploded leaving international health authorities with their hands tied. Not only does it lead to import of tropical diseases to high income countries it also poses a health threat to communities in low income countries through tourist importing news diseases to rural areas[22].
Getting the proportions right
 
Reality check: The global health reality is drawn by media, decision makers and donors but does not always match what researchers and the most vulnerable population groups see.
Social media shows social networks we couldn’t see before: happiness, overweight, smoking and risk behavior spreads in ways we would never have imagined and further in networks than expected.
Loneliness is just as dangerous as smoking 30 cigarettes a day.
Children in LIC continue to die from simple preventable and treatable infectious diseases.
91 % of worldwide traffic deaths occur in LIC and constitute the most prevalent cause of death in ages 15-29 years. Half of them are pedestrians and bicyclers.
100 mio people globally fall into extreme irreversible poverty because of illness related expenses imposed on them by doctors and the health care system.
Getting the counting right
 
It is not a human right to be counted or to be counted right. It is not a right to have access to research results or that they are put into practice
Population groups with low literacy, low numeracy or health literacy are routinely excluded from investigations and research. Hence, they are neither made part of the challenge or the solution to the challenge.
Though interventions tend to be most effective among the poorest and with less school education most interventions tend to be based on less poor and more educated.
Poor population groups have no voice in global health and are targeted by interventions aimed at groups that have very little benefit from them.
Understanding the mechanics  of social determinants
 
We have virtually no understanding of-, or research in, the mechanisms by which social determinants and school education affects health and disease.
Recent research has demonstrated that poverty does bad things to your brain: you are less competent in decision making and combining information because the brain is occupied with worries and distress that occupies cognitive resources.
Poor people are not just sick because they are poor but because they are 5 times more likely to live in unhealthy and deprived areas. They are five times more likely to be subjected to unofficial fees before treatment. Because of inherent differences in interaction, poor people are sick because health care has less effect among the poorest patients than among less poor.
School education makes patients walk longer for help, makes them ask more questions, compliance is increased and they recover more quickly.

 

Solutions & recommendations

A problem cannot be solved by the same mindset that created it. We therefore need to establish an international body that independently can defend existing sound pro-poor health interventions and be given mandate to reject new interventions until they have provided an evidence base.

The international agency should:

·         Record, and promote use of, evidence and experience in global health including historical observations

·         Monitor and promote research into practice and protect simple good interventions from shifting fashions in global health

·         Protect the most vulnerable population groups from random unpredictable effects of moods, morals and money

·         Evaluate and comment on equity issues in existing or new global health interventions

·         Work under the idea that: Ideas don’t have rights – people do.

Furthermore it is recommended that:

·         Research should focus on mechanics of social determinants and school education

·         Investments in education to improve empowerment and health behaviour

·         Investment in poverty reduction to improve health decision making among the poorest and protect against iatrogenic poverty

·         Research on research: how to get the best and most interesting research questions funded and how results are best translated into policy and practice

 

Conclusions

Global health should be studied the same way we study peacekeeping, global governance and defense management. Pandemic flu won the First World War – there were too many unplanned casualties following the attack from an unexpected enemy for which no sides of the war had effective defense mechanisms. Health has always been a part of “high politics” – but while the flu didn’t get much attention for its role in the First World War, HIV, SARS and the recent flu pandemics have wiped away any doubts about the importance of global health in shaping foreign policy, international relations and human security. International relations have been invaded by a range of health subjects that previously were blind spots: globalization, human rights, social determinants, social media, migration and international law. Women live lives more dangerous than soldiers at war just because they give birth, every year 200 million people end in extreme poverty because of catastrophic health expenditure for their illness, every day 4,500 children die from simple and preventable diseases such as diarrhea while sanitation still receives less than 0,5 % of what is spent on aid in low income countries. All of these deaths and suffering are the result of local and international political decisions. Decisions made contrary to what history has learnt us and contrary to what science tells us. Most people will agree that health is a human right is vital to good politics and human security, yet States have consistently refused or ignored to include health on the list of basic rights. An open world has been created by globalization and social media, but politicians and large international donors need to open their minds to the history and science of global health. The 186 years from Smallpox immunization was discovered until the disease was eradicated, is a lesson in global health: science, as health, does not exist in a vacuum and depends deeply on brave sensible politics based on facts and historical evidence. Today we can control a car driving around on Mars and drones can deliver ordered books directly to you within an hour – why is it then that hand washing, sanitation, maternal-child health and respect for history and scientific evidence is so difficult? Maybe we have complicated matters by allowing global health to be defined and governed by a chaotic group of private donors, large funds and NGOs without regard to what human beings really need to be able to live a normal healthy life. Most states, even when committed to health as a foreign policy goal, still make decisions primarily on the basis of the ‘high politics’ of national security and economic material interests. Development, human rights and ethical/moral arguments for global health support, the traditional ‘low politics’ of foreign policy, are present in dialogue but do not appear to control practice. While political drive for health as a foreign policy goal persists, the framing of this goal remains a disputed issue. Narrow minds in an open world are what prevent global health from releasing its full potential among the poorest populations of the world. Homer Simpson shows us just how embarrassing our narrow minds are: “How come you guys can go to the moon but you can't make my shoes smell good?” Maybe it is not so difficult after all if we start with the smelly feet problems instead of looking for a fix behind the moon? Condoms were invented in 1564 but still fail to be in the right place at the right time. Global health in an open world requires an open mind….and brave sensible politicians dealing with earthly matters.

 

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fredag den 26. maj 2017

Fattige systemer spiser gode mennesker til morgenmad


Hvad har erhvervsdykkere, stunt piloter, U-båds kaptajner, astronauter, samtale forskere, terroreksperteratom ulykkes eksperter, bjergbestigere og jordomsejlere til fælles med læger? Ikke meget, viste det sig efter 2 dage på Risky Business konference i London i sidste uge. Konferencen udgøres af 32foredrag, over 2 dage og er fokuseret på hvad andre faggrupper gør for løbende og proaktivt at styrke team samarbejde, reducere fejl, undgå ulykker, forberede sig på katastrofer og minimere konsekvenserneI salen sad 300 sygehuschefer og ledere af hospitalsafdelinger. De måtte lægge øre til at det pæneste oplægsholderne kunne sige om sundhedsvæsnet, at vi er totalt gode til ikke at være totalt dårlige. Alle oplægsholderne udtrykte dyb forundring over sundhedsvæsenets forståelse af sikkerhed, rettidig omhu og årvågenhed. Der blev flere gange talt om at problemet var at organisationen (sundhedsvæsenet) tillod at den enkelte læge frit kunne udøve kreativ selv retfærdiggørelse: jeg er dygtig, jeg er fejlfri så hvis der sker fejl er det i hvert fald ikke min skyld. Ikke et ord om team ansvar, kædeansvar eller kollektiv ansvar for patientsikkerhed. Sundhedsvæsenet var, mente en U-båds kaptajn gennemsyret af en massiv beskyldnings- og bebrejdnings kultur der sætter sikkerheden på spil og skjuler farer, usikkerhed og ofte får ”rådne æbler” lov til at gemme sig bag den offensivt anklagende retorik overfor kolleger. Mens man i luftfartsvæsenet siger: Selv om jeg er intelligent og strålende dygtig pilot, kan jeg altid blive bedre, så siger ansatte i sundhedsvæsenet: vi er strålende og dygtige og det behøver vi ikke at øve. Luftfarten er altid på udkig efter det de ikke ved eller har overset, mens sundhedsvæsenet ikke kan se der er blinde pletter. Sundhedsvæsenet har et nagelfast mindset og et kæmpe stort ego, der står i vejen for forbedringer og sundhedsvæsenet lærer derfor ikke nok af sine egne fejl. En foredragsholder kaldte det lægers kreative selvretfærdighed og mente at det torpederede alle adaptive processer. En anden sammenlignede lægers beslutningsprocesser med de modeller man anvender for at forstå forbrugeres besynderlige måde at vælge hvad de køber: de reagerer på følelser og instinkter og så rationaliserer de deres valg bagefterSom det blev nævnt utallige gange: sikkerhed er ikke fravær af ulykker, men evnen til at kunne reducere antallet og reducere alvorligheden ved konstant at analysere organisationens tilstand og holde alle på tæerne. En ung læge der selv havde været gennem et langt kræft forløb fortalte hvordan han oplevede at hans lægekolleger mente de kunne lære af fejl bare ved at observere dem. Han sammenlignede det med at tro man kunne forstå hajers tankegang bare ved at kigge på dem i et dykkerbur. Sundhedsvæsenet, mente mange, var præget af den opfattelse at der ikke er grund til at træne never-events når de ikke findes.  Never-events findes ikke men de må ikke blive for hyppige. Det er for sent at øve sig når skaden er sket: Your 'fire alarm' should be wired to be paranoid - it shouldn't be doing risk-benefit analysis while your house is burningsom det blev udtrykt. En liberiansk læge der var chef for en stor Ebola behandlingsklinikopdagede først da han stod midt I epidemien at hans eget personale var bange – så bange at de sagde op før han kunne nå at fyre dem for at nægte at arbejde med de hundesyge ebola patienter. Sundhedsministeren i Sierra Leone sagde direkte om sine ansattes indsats under epidemien: ”Jeg vidste ikke at vore ansatte var så dårligt uddannede”.
Lægers hang til retningslinjer og guidelines fik også et skud for boven: der var en tendens til at checklister blev udviklet og testet i ét, typisk meget kontrolleret, miljø men blev derefter anvendt i helt andre ukontrollerede miljøer i virkeligheden. Virkeligheden er altings test, som det blev sagt, men der var ingen i sundhedsvæsenet, der sikrede at checklisten til helikopteren var forskellig fra checklisten til U-båden. Læger belønnes for at følge retningslinjer og best practices men der var mange gode eksempler på at guidelines var patient fjendtligestyret af interessegrupper og direkte farlige hvis de ikke blev tilpasset patientens liv og vilkår. Man skal kende grænserne for retningslinjer lige så godt som retningslinjerne selv: Læger belønnes for at følge dem, men patienter mister uafhængighed og livskvalitet hvis guidelines følges bevidstløst (1)
Der er ingen der råber ad lægen hvis bare han følger guidelines, uanset resultatet. Her blev der draget en analog til Heathroweffektenalle mente at London City Airport var en god og nem lufthavn med billige afgange til New York, men sekretærer der booker fly til deres chefer valgte alligevel Heathrow for at undgå at få skæld ud – chefer flyver fra Heathrow, basta – så den billige rute måtte nedlæggesDet blev flere gange nævnt, at læger ofte tager beslutninger mest for at undgå at blive til grin og i meget lille grad for at imødekomme patient hensyn. Hellere én eddikesur patient end 20 kolleger der gør dig til grin næste morgen.
Lægers udbrændthed er et hedt emne i det engelske sundhedsvæsen. Udbrændthed var forbundet med flere kirurgiske fejl, for tidlig udskrivelse af patienter, dårlig kommunikation, patientkonflikter og forringet behandlingskvalitet. F.eks. havde 60 % af yngre prøvet at gået igennem en hel vagt uden at spise og lægers lave blodsukker forringede patient sikkerhed. Der var nu etableret rehabiliteringsprogrammer for udbrændte læger men man så kun at de udbrændte læger blev sendt tilbage i kaos så de hurtigt udbrændte påny. Fattige systemer spiser gode mennesker til morgenmad, som det blev bemærket med underspillet engelsk ironi. Den stærkeste evidens for at forhindre udbrændthed viste sig således også at ligge på organisations interventioner – ikke på individuelle interventioner. Rådet til sygehuslederne i salen var klart: se efter system og organisationsfejl før i prikker enkelt personer ud som udbrændte. Det er organisationens ledere der er ansvarlige for proaktivt at sikre et fysisk og psykisk arbejdsmiljø.Vi overvurderer vigtigheden af fejl, mens vi undervurderer vigtigheden af ekspertise/fremragende kvalitet. I hverdagen kan et simpelt tak” eller at rose en ekstraordinær indsats være en god lavmælt intervention til at øge patient sikkerhed og forhindre en kollegas udbrændthed.
Ironisk nok var data sikkerhed og kunstig intelligens også et emnenetop den dag hvor det meste af NHS blev lagt ned af en den lille orm WannaCry(!). Her var bekymringen dog primært hvordan kunstig intelligens, automatiske diagnostiske algoritmer og automatiseret beslutningstøtte til læger i sig selv forringede lægers kliniske dømmekraft og gradvist fik deres diagnostiske beslutningsprocesser til at forvitre og visne hen. Maskiner er ikke dygtigere end dem der programmerer dem og hvis de bliver dummere så gør den kunstige intelligens også. Det er et aspekt ved at håndtere teknologiske fejl . Menneskefejl kan være etisk eller moralsk uforsvarligemen patientulykker som følge maskinfejl eller computerprogrammer kan ikke gøres til genstand for fordømmelse eller straf. 
En specialist i forhandling med terrorister sagde det meget præcist: man får ikke meget fred ud af at tale med sine venner – det kommer kun hvis man taler med sine værste fjender. Og hendes råd var at selv i den værste terrorist var der en menneskelig forbindelse – man skulle bare finde den. Vi er nødt til at tale direkte med fejlene og de implicerede og finde den modificerbare menneskelige faktor.
Mcdonalds restauranter er kendetegnet ved at være totalt gode til ikke at være totalt dårlige. Det er mad de serverer, man får hvad man beder om og det er altid samme forventelige kvalitet uden at være direkte elendigt. Men er det godt nok at et moderne Sundhedsvæsen ikke er totalt dårlige? Kunne vi ikke gå efter en enkelt lille Michelin stjerne – eller bare en enkelt stjerne i? Skulle vi ikke lytte lidt til hvad kunderne siger? Som Bill Gates sagde: måske er dine eneste rigtige venner de sure kunder der fortæller dig hvor organisationen halter. Vkunne sagtens arbejde mere systematisk med teamtræning, forebyggelse af udbrændthed,hyppigere fejlanalyser og realistiske risikoøvelser uden at lægestandens ære, værdighed og strålende intelligens besudles.

onsdag den 10. maj 2017

Læger skal respektere sproget som deres måske eneste kliniske værktøj


”Hvis du taler til et andet menneske i et sprog, så taler du til hjernen, men taler du til det på dets modersmål, så taler du til dets hjerte” (Nelson Mandela)

Sproget er lægens vigtigste, måske eneste, værktøj til at forstå patientens symptomer. For flygtninge og indvandrere er det altafgørende, at de forstås korrekt, fordi de kulturelle værdier omkring krop, sjæl og sygdom er fæstet i modersmålet og der kan være store forskelle i sygdomsopfattelser. Som læge skal man være enig med patienten om centrale værdier og meninger om sygdom, lidelse, smerte, sorg, angst, bekymring, lindring og helbredelse. Det er vigtigt at lægen forstår patientens billeder og oplevelser korrekt, så meningen ikke går tabt. Men mening bearbejdes og forstås på modersmålet, og ikke nødvendigvis på andetsproget. Mange almindelige ord på første sproget eksisterer simpelthen ikke på andetsproget. Vigtige centrale kulturelle værdier om sygdom kan være kodet i første sproget på en sådan måde at det kræver meget dygtige tolke og længere samtaler for at det kan blive forstået på andetsproget. For dem der ikke kan læse, kan en avis, et pilleglas, et vejskilt eller et brev fra sygehuset, være angstprovokerende, skabe frustration, forstyrre normal sygdomsadfærd og hindre social kontakt. Generaliseringer og fordomme opleves af patienter med sprogbarrierer som en umyndiggørelse og umenneskeliggørelse. Vi bliver medlemmer af et fællesskab gennem sproget, der gør verden forståelig og meningsfuld. Den verden vi lever i bliver virkelig gennem sproget. Vi bliver selv synlige og meningsfulde. Sproget er vigtigt for den enkelte patients mulighed for at tale imod og nuancere den generalisering de ofte udsættes for i mødet med sundhedsvæsenet. Mennesker tænker i metaforer og lærer gennem historier og lever med forskellige fortællinger i forskellige sammenhænge – ikke mindst når de er syge.  Det er vigtigt at lægen forstår de metaforer (billeder) som patienten anvender og patienter har mange forskellige versioner af deres sygehistorie afhængigt af hvem de taler med, hvor de taler om den og om de føler tryghed. Læger er ofte ikke bevidste om at sproget anvendes meget forskelligt i forskellige kulturer langt ud over almindelige sproglige kompetencer. Betydningen af tone fald er kulturelt bestemt og kan give anledning til misforståelser. Det kan være en kunst for flygtninge/indvandrere at overleve en samtale uden at grine forkerte steder eller sige noget forkert på et upassende tidspunkt. Pauser i en samtale er vigtige men har varierende betydning som kan forvirre: pausen er en kulturel udfordring fordi de signalerer på forskellig vis om man stadig tænker eller om man er færdig med at tale. Lange pauser: har jeg sagt noget helt forkert? Korte pauser: hvorfor afbryder patienten hele tiden? Uklarhed om samtalens omdrejningspunkt og højdepunkt kan give anledning til alvorlige misforståelser, fornærmelser og mistillid: I nogle kulturer skal man vente med at komme til sagen til slutningen af hvad de vil sige i andre går man direkte til sagen, mens endnu andre kun lige glimtvis indirekte berører sagens kerne. Lægens budskab kan misforstås helt hvis man hele tiden forventer at konklusionen først kommer til allersidst eller lægens budskab kan virke rodet og uprofessionelt fordi det opleves at informationen gives spredt & tilfældigt og ikke i starten.

Samtidig har rationalisering og automatisering ført til betydeligt øgede læsekrav: Man taler ikke længere med købmanden, men læser skilte, varedeklarationer og brugsvejledninger.  Man taler ikke med billetkontoret eller med bankassistenten, men bruger billetautomaten, læser køreplaner, læser brugsanvisninger, ligesom man læser på pengeautomatens skærm eller skriver til databanken. En læsefærdighed, der var rimelig god i 1960'erne, kan således være helt utilstrækkelig i dag. Og de unge med læsevanskeligheder i dag er væsentlig dårligere stillede, end de dårlige læsere var i 1960'erne. En patient der var selvhjulpen i går kan blive hjælpeløs i dag fordi en sygehusafdeling eller kommunen har lavet om på adgangsforhold, informationsmateriale eller har indført e-post. Patienter med kort eller ingen skolegang har svært ved at navigere imellem sygehusafdelinger og kommunale kontorer – mere end de samme patienter havde for 20 år siden.

Læger anvender desuden mange fagudtryk som vi anser for ikke at kræve forklaringer, dem kalder man gråzone ord. Eksempler på gråzoneord: foretager, det udvalgte, konsekvensen, kredsløbet, nedsat kondition, iltoptagelsen, vævene, forebygge, dehydrering, væskeregistrere, væskeindtag, ved mistanke om, øge risikoen for udvikling af, forebyggende element, ordinere, behandling, BMI, hypertension, tumor, akut etc. De fleste gråzoneord kan være svære at oversætte til andre sprog, når de ikke engang forklares på dansk.

Når der anvendes tolke i sundhedsvæsnet skal man være klar over, at det medfører at modtageren kun får én version af det oprindelige udsagn og samtalen bliver en hel række af udvalgte versioner – der findes med andre ord mange udgaver af samtalen, og lægen hører måske en anden den patienten hører. Her er det derfor ekstra vigtigt at lægen og patienten løbende sikrer sig at de taler om den samme udgave af samtalen – og når de samme konklusioner. Det kræver øvelse og tålmodighed, men er en nødvendighed.

I virkelighedens verden er det dog faktisk undtagelsen, at patienter der har brug for tolk faktisk har mulighed for tolkebistand til lægesamtalen. Sprogbarrierer påvirker redskabets præcision og manglende respekt om denne forhindring er ikke omkostningsfrit. Hvis sprogbarrieren ikke søges minimeret har det veldokumenterede alvorlige følger for patientsikkerhed, komplikationer og overlevelse.

En stor gennemgang af over 100 studier af læge‐patient kommunikation blev det vist, at når patienter ikke forstår lægen så fører det til uhensigtsmæssige medicin pauser og unødvendige indlæggelser. Hvis patienten ikke forstår lægen er der 20 % større risiko for at medicinen ikke tages som den burde.

Læger er ofte ikke er klar over hvordan deres egen (læge-) kultur påvirker deres kliniske beslutningsevner, men det er veldokumenteret at køn, alder, social status, uddannelsesniveau og etnisk dis/konkordans mellem læge og patient direkte påvirker lægens kliniske beslutningsproces omkring undersøgelse, behandling og informationsniveau (og om patienten forstår og har tillid til lægen). Selvom læger ikke mener de foretager social og sproglig kategorisering i den kliniske patient situation, så sker det alligevel som en del af en ubevidst sofistikeret individualiserings strategi. Udover at tage udgangspunkt i den enkelte patient, de sidder overfor, så ”læser” lægerne samtidig patienterne ved hjælp af en social radar, der registrerer patientens fysiske og psykiske fremtoning, interaktion og sprog brug.

Læger er desuden tilbøjelige til at overestimere patienters læsefærdigheder og derved risikerer lægens information at være for kompliceret for patienten. Ofte har patienter så lidt udbytte af lægens information, at de ikke kan stille spørgsmål fordi de ikke har fornemmelse af kontekst eller mening og derfor vælger tavshed. Patienter, der er usikre på lægens kliniske beslutningsproces, fortryder oftere senere beslutninger om undersøgelse og behandling hvilket forsinker diagnose og behandling.

Indvandrermedicinsk klinik har tidligere påvist de overordnede problemer med patientsikkerhed, compliance og behandlingskvalitet hos etniske minoritetspatienter. Der findes stadig ikke opgørelser over utilsigtede hændelser eller patientfejl, der involverer patienter med sprogbarrierer. Traditionelt rapporteres fejl som følge af sprogproblemer ikke fordi de anses for at være et normalt vilkår som patienterne må leve med og det er ikke sundhedsvæsenets ansvar. Fejl som følge af lave sundhedskompetencer, funktionel analfabetisme eller sprogbarrierer er selvfølgeligheder som må adresseres på ad hoc basis uden særlige retningslinjer eller rutiner. Ofte er det den enkelte afdelings kultur der afgør om en fejl opfattes som fejl på dette område eller de er forventelige uundgåelige hændelser, der alligevel ikke kan ændres af sygehuset.

I en ny undersøgelse af fejl og forsinkede diagnoser blandt flygtninge/indvandrere fandt vi at 2 ud af 3 patienter havde været ude for en fejl som følge af at der ikke blev anvendt tolk og at lægen ikke brugte den fornødne tid på at forstå patientens symptomer. Hver 4. af patienter havde oplevet 3 eller flere fejl.

Det må nu være tiden hvor de sundhedsvidenskabelige fakulteter og de ansvarlige for speciallæge uddannelserne tager dette område mere alvorligt. De bør overveje hvordan sprog, tolkning og tværkulturel kommunikation kan integreres bedre i lægeuddannelsen. Det kan ikke være rigtigt at patienter i 2017 stadig skal tale med fingrene hos lægen. De har krav på også at kunne tale med hjernen og hjertet.

torsdag den 23. marts 2017

Kampteknik på chefgangen

(Bragt første gang I Ugeskrift for læger)



Jeg underviste forleden i tværkulturel konflikt undgåelse i sundhedsvæsenet på Aarhus Universitetshospital. Mødet var kommet i stand fordi en sygehusdirektør havde spurgt afdelingerne om hvilke udfordringer de havde og etniske minoritetspatienter og deres pårørende var et emne mange gerne ville klædes bedre på til at tackle. Det var et glimrende møde med oplæg og et meget kompetent panel af eksperter der sammen med publikum gennemgik glimrende cases fra sygehusets hverdag. Der kom mange gode observationer fra deltagerne, men også nogle fortvivlede nødråb fra flere sider om fysiske forhold, vilkårlige tolke forhold, manglende kulturelle kompetencer på sygehuset og hvorfor der endnu ikke var en etnisk ressource enhed på sygehuset. Desværre var den direktør der havde taget initiativet i mellemtiden, helt uventet, blevet fyret. Så de mange gode spørgsmål fra praktikerne hang ligesom utilfredsstillende ubesvaret i luften – der var ingen til at lytte, svare eller tage det op i ledelsessammenhæng. En mærkelig død, men desværre meget almindelig, afslutning på et i øvrigt supergodt seminar.

Vi, Indvandrermedicinsk klinik på Odense Universitetshospital, har nu undervist i indvandrermedicin i snart 10 år og der er 4 observationer der efterhånden ligner en regel: 1) Der er meget få mandlige tilhørere, 2) der er max 1 læger/100 tilhørere, 3) der er ingen tilhørere fra ledelsesgangen og 4) yderst sjældent politikere blandt publikum. Den mandlige tilhører er ofte enten lydmanden eller ham der slukker lyset når vi går. Ledelsen er typisk kun tilstede, hvis der er politisk deltagelse og begge forlader seminaret når skåltalerne er overstået. Tilbage i salen sidder 50-500 kvindelige tilhørere – alle praktikere med direkte kontakt til etniske minoritetspatienter, deres pårørende og til etnisk danske sårbare patienter. De oplever udfordringer som faktisk er problemer, de oplever kulturmøder som faktisk er sammenstød, de møder sociale udsatte patienter der ikke er patienter og de oplever personlig utilstrækkelighed som faktisk er utilstrækkelig faglig uddannelse. Praktikere har ofte en god idé om hvad der er galt, hvor det er galt og hvad der skal til for at løse det. Nogle har kaldt det hverdagens onde etik: de mange beslutninger man hver dag må tage hvor regler må bøjes og kolleger overbevises for at man kan hjælpe en patient. Mange praktikere kan beskrive hvordan de oplever at have en meget klar fornemmelse af hvad der skal til for at hjælpe multisyge, dobbeltdiagnoser og andre sårbare patienter. De fleste af dem har også været på kurser i de ”spændende udfordringer” de svære patienter præsenterer for dem, men når de mandag morgen kommer oplivet og kampvillige tilbage fra kurset, rammes de af 3 hug fra virkelighedens velslebne sabler: ”drift”, ”plejer” og den kollektive fatalisme. Der er ikke tid, det er ikke noget afdelingen prioriterer og man får fornemmelse af at man blev sendt på kursus for at blive underholdt – ikke for at komme tilbage og lave om på alting. Praktikere tillærer sig en sund portion pragmatisme næret af en grundlæggende fatalisme: jeg kan ikke gøre noget, jeg ved ikke hvem der gider hører på mig og ledelsen vil alligevel ikke gøre noget.

Jeg talte for nylig med en antropolog, der i mange år har arbejdet med etniske minoriteters sundhed på regions niveau. Vedkommende havde også undret sig over hvorfor alle de gode observationer praktikerne præsenterede på de uendeligt mange seminarer, der blev afholdt, aldrig blev omsat til projekter eller nye initiativer. Han var kommet frem til at de altid blev stoppet på ledelsesgangen af ledere, der netop ikke havde været på seminaret. Folk der har arbejdet med diversitet i sundhedsvæsenet og ulighed i sundhed i England så at der altid var repræsentanter for sygehusdirektionen til seminarer – alt andet var utænkeligt.

Regionerne har motto’er som ”Patienten først” og sågar ”Patienten er alt”, men når det kommer til implementering i hverdagen er det stadig helt op til den enkelte medarbejder, hvordan de lige selv vil udmønte det, for rammerne ændres der ikke på. Hvis man fra ledelsesside samtidig fravælger deltagelse i netop de seminarer og workshops hvor rammer og vilkår for sårbare patienter så sender det et meget tydeligt signal: ledelsen har ingen ambitioner og har ikke behov for input. Og deltagelse er ikke lig med at holde en kort tale om visioner. Der foregår 2 uafhængige kulturelle processer: Chefgangen holder ledelsesseminarer på pæne kursussteder langt fra sygehuset og medarbejderne holder fyraftensmøder i mørke auditorier på sygehuset. 2 monologer er ikke en samtale. Problemer fra front linjen gennemlever en transformation til spændende udfordringer og personalet med de virkelige seje hverdags etiske problemer udvikler en fælles fatalistisk holdning til de svære, besværlige, skæve og sårbare patienter: jeg må åbenbart selv om hvad jeg gør, for ledelsen giver mig ikke retningslinjer for situationer der kræver en ekstraordinær indsats.

Der er stadig en beskæmmende ulighed i behandling på sygehuse, patienterne er ikke rigtigt i centrum, og de ansattes frontlinje erfaringer med de sårbare patienter tages ikke alvorligt på chefgangen. Derfor må praktikerne tage nye kampteknikker i brug på chefgangen. Hvis vi skal ændre den situation må vi have et fælles sprog, ledelse og ansatte, om problemerne og løsningerne og dét opnås kun ved at vi mødes til de seminarer, hvor vi diskuterer hvorfor der ikke er lighed i sundhed. Lederne skal holdes op på, at de også er ledere for hverdagens problemer på et sygehus. De bør aktivt deltage i de seminarer, hvor hverdagen på sygehuset kommer til debat og gerne tage en politiker med. Ledere skal måske sætte sig personlige mål for deltagelsen i medarbejderseminarer. Læger lever på den falske præmis at de ikke spiller nogen rolle for uligheden – det meste evidens på området peger på at læger sammen med den strukturelle ulighed er hovedsynderne. Ledelsen må derfor sikre at læger involveres i arbejdet, så det ikke kun er plejepersonalets ansvar at sikre patienters rettigheder og lige behandling. Og måske skal vi én gang årligt øves i at tackle hverdagens onde etik ligesom vi træner de heldigvis meget sjældne hændelser som hjertestop og brandøvelser. Sårbare og kort uddannede patienter får ikke det samme sundhed for skattekronerne som andre patienter og de barrierer de møder virker hver time døgnet rundt året rundt på alle landets afdelinger. Der er hårdt brug for nye kampteknikker på chefgangen, men hvorfor ikke starte med at I kommer til de seminarer der allerede ér arrangeret på Jeres sygehuse, lytter til erfaringerne, blander Jer i debatten og går i nærkamp med Jeres fornuftige ansatte, der bare gerne vil vide hvad de skal gøre med deres erfaringer? Og lad nu være med at bede dem ”gå til din nærmeste leder”, for de har hverken svarene, eller mulighederne, for at ændre organisationen – det har chefgangen. Seminaret på Aarhus Universitetshospital var faktisk en følge af et godt spørgsmål til medarbejderne netop fra chefgangen – desværre glemte chefgangen at følge op på svaret og deltog ikke i seminaret. Man skal ikke spørge hvis man ikke vil have svaret, men nu er der spurgt og medarbejderne på seminaret havde en række gode spørgsmål til ledelsen, som stadig hænger ubesvaret i luften. Kom nu ind i kampen, chefer.