Preventing overdiagnosis: how to stop harming the healthy
BMJ 2012; 344 doi: https://doi.org/10.1136/bmj.e3502 (Published 29 May 2012) Cite this as: BMJ 2012;344:e3502
All rapid responses
Rapid responses are electronic comments to the editor. They enable our users to debate issues raised in articles published on bmj.com. A rapid response is first posted online. If you need the URL (web address) of an individual response, simply click on the response headline and copy the URL from the browser window. A proportion of responses will, after editing, be published online and in the print journal as letters, which are indexed in PubMed. Rapid responses are not indexed in PubMed and they are not journal articles. The BMJ reserves the right to remove responses which are being wilfully misrepresented as published articles or when it is brought to our attention that a response spreads misinformation.
From March 2022, the word limit for rapid responses will be 600 words not including references and author details. We will no longer post responses that exceed this limit.
The word limit for letters selected from posted responses remains 300 words.
We read with interest the paper by Moynihan et al discussing the issue of overdiagnosis in Medicine.(1) We wish to bring to the attention of your readers another potential source of overdiagnosis that is related to the histopathological examination of surgical specimens.
It is standard practice for histopathologists to submit sections from background macroscopically normal tissue for microscopic examination and these may contain unexpected in-situ or rarely invasive cancer. For example, excision of a fibroadenoma may reveal DCIS in the background breast, background tissue from a multinodular goitre may show a papillary thyroid microcarcinoma and sections from a uterus removed as part of treatment for uterine prolapse may rarely reveal asymptomatic well differentiated endometrial adenocarcinoma or cervical carcinoma in situ. The natural history of such microscopically detected neoplasia is often uncertain and it could reasonably be argued that examination of such background tissues amounts to a form of screening for which the patient has not specifically consented to and certainly has not been counselled. An extreme example of "microscopic screening" is the routine histological examination of the entire prostate from cystoprostatectomies performed for treatment of bladder cancer, in order to exclude coexisting clinically occult prostate cancer.
Another potential source of overdiagnosis is related to nomenclature. Most non-invasive papillary urothelial tumours of the urinary bladder are designated as transitional cell “carcinoma” without the qualifying suffix “in-situ”. This results in patients with papillary dysplastic urothelial proliferations being diagnosed as suffering from bladder cancer. This issue was highlighted by William Murphy in 1999 when he commented that “confusion of the risk of carcinoma with the presence of carcinoma seems to be a mind-set peculiar to the discussion of urothelial neoplasms,”(2) There is also significant inconsistency in the nomenclature of in-situ neoplasia across organ systems. Biologically analogous in-situ dysplastic proliferations would be designated as an adenoma in the colon, ductal carcinoma in situ in the breast and carcinoma in the bladder.
Moynihan et al describe excessive widening of disease definitions as a cause of overdiagnosis. The most extreme illustration of this phenomenon is the use of the term “cancer”. The public perception of cancer as a lethal disease probably stems from the fact that in most cases this disease (or rather group of diseases) was originally diagnosed only after spread and hence associated with a uniformly dismal outcome. However, currently most cancers are clinically localised diseases that are interpreted as having metastatic potential based on their microscopic appearances. In some cases, the diagnosis of malignancy is based on subtle histological abnormalities, such as capsular invasion in encapsulated microinvasive follicular thyroid carcinomas that are associated with minimal risk of adverse clinical outcome and the rationale of labelling such tumours as “cancers” in the absence of associated angioinvasion has been questioned.(3) Thus the term cancer is today not uncommonly used for tumours with very low risk of causing significant harm to the patient. More recently genetic abnormalities have been identified in several cancers and in some cases these have suggested as diagnostic criteria. For example, presence of RET/PTC gene mutations in trabacular hyalinising adenoma of the thyroid has been used to argue that this clinically indolent tumour should be considered a variant of papillary thyroid carcinoma.(4) Such an approach could lead to further widening of the definition of cancer and risk “medicalisation” of patients with clinically harmless disease.
REFERENCES
1. Moynihan R, Doust J, Henry D. Preventing overdiagnosis: how to stop harming the healthy BMJ 2012;344:e3502.
2. Murphy WM. Bladder cancer redefined. Cancer 1999;86:1890-189
3. Williams ED. Two proposals regarding the terminology of thyroid tumors. Int J Surg Pathol 2000;8:181–183.
4. Cheung CC, Boerner SL, MacMillan CM, et al. Hyalinizing trabecular tumor of the thyroid: a variant of papillary carcinoma proved by molecular genetics. Am J Surg Pathol 2000;24:1622–1626.
Competing interests: No competing interests
This paramount essay (1) proposes some actions that we can take about overdiagnosis:
a) to build on existing knowledge with the 2013 Conference on overdiagnosis, to provide a forum for learning more, increasing awareness, and developing research on ways to prevent the problem.
Moreover, at a policy level:
b) to start a reform of the process of defining disease, narrowing the disease definitions and raising many disease thresholds, and furthermore recognizing the wider social and environmental determinants of health
c) to review the permanency of some diagnostic labels
d) to increase independence in the design and running of scientific studies
e) to adjust the legal and structural incentives driving overdiagnosis.
We think that the latter is the real root of the problem, which lies on the main current rewarding systems in the health market, and on their logical consequences on the behaviour of nearly all providers.
If the health systems follow models that actually “pay for the disease”, no wonder that the market adapts its behaviour and “sells the disease” as much as possible, diagnosing/anticipating it even if the prognosis does not change, dramatizing it and even “creating” it.
Paying for the disease puts Health Boards and Systems, and Hospitals, GP practices, doctors, pharmacists, and nearly all players in the health market arena in structural conflict of interests with health and wellbeing.
It is time for the public health systems, in alliance with WONCA and EURACT and UEMO (2, 3, 4), to undertake two main actions.
First, they should react more boldly and give clear-cut answers, highlighting the possible health and economic risks of many diagnostic and therapeutic technologies, for both the individual and the community (starting from the involvement of the middle classes, who bear the greatest burden of taxation to support NHS where too many resources are unnecessarely wasted, and whose own safety is also threatened by the increasing diagnostic “epidemic” and overtreatment). This strategy can be more effective, rather than simply claiming that “there is not sufficient evidence” to recommend/pay for these technologies.
More important, the NHSs should reform the health organizations’ financing systems and the professionals’ remuneration schemes, so that their interests become aligned to the patients’ and community health (expressed as an unequivocal outcome, that is longevity) rather than to their diseases.
Examples of ways to pay for diseases are:
• Fee-for-service, reimbursement systems, price for drugs
• D(iagnosis of disease)RGs
• Disease management
• Private practice (fee-for-service rewarded)
• Payment for inputs, processes, outputs not related to outcomes.
Different ways to pay for health (by a tax funded National or Regional Health Fund, or possibly by a Health Manteinance Organization with a territorially defined catchment area) are (5-6):
1) Capitation weighted for the patient’s age (to reward GPs, pharmacists, health Districts, local Health Units …), in a yearly continuous progression, i.e. a centenarian yearly capitation should weights ten times an adolescent capitation.
This would be an equitable way to pay for the additional work of caring for patients getting older; but, above all, it would give a strong signal of a health policy targeted to the main objective of a Health System: a healthy longevity for all. It would give a virtuous incentive - not related to the quantity/complexity (both easily induced by providers) of performed services – to help one’s own patients’ cohort to age more and better, thus aligning ethics and better income for GPs, Health Local Units and so on (5). This virtuous rewarding model should include even Hospitals, whose core business should come from a fraction of the capitation of the Local Health Unit in which they are placed and that pays them, in relation to the age structure of population that corresponds to their catchment area (5, 7).
2) A complementary way to pay for Health may be: further incentives, based on health (or economic) outcomes (or levels of outcome), that may be added for special objectives, not rewarded enough by the age-weighted capitation (5) (for example:
- babies cared for by a GP practice, who are breastfed for one year or more over challenging thresholds (based on local epidemiological data)
- having a percentage of obese babies and adolescents followed by a GP practice under challenging thresholds (based on local epidemiological data), making it convenient not to have many obese patients and to treat them, but rather to have few obese patients, due to the fact of having effectively prevented their overweight during their life
- hypertensive subjects treated with first line low-dose thiazide-type diuretics over high and very high thresholds, instead of being treated with more expensive but not more effective drugs).
In any case, fee-for-service incentives should be carefully avoided, because they increase technological abuse, services that are profitable, irrespective of their effectiveness, and disease mongering.
References
1. Moynihan R, Doust J, and Henry D. Preventing overdiagnosis: how to stop harming the healthy. BMJ 2012; 344:19-23
2. van Weel C, Carelli F, Gerada C. Reforming primary care: innovation or destruction? BJGP
2012 Jan; 62:43-4.
3. Public statement of EURACT Council Meeting, University of The Algarve November 10-12, 2011. http://www.euract.eu/euract-news/116-general-practice-family-medicine-ca...\
r-real-solutions-in-stressed-healthcare-systems-throughout-europe
4. UEMO Position on Disease Mongering and Quaternary Prevention. http://www.uemo.eu/uemo-policy/123.html
5. Donzelli A. Allineare a etica e salute della comunità dei cittadini le convenienze dei diversi attori in Sanità. Mecosan – Management and Economia Sanitaria 2004; 50:131-47
6. Donzelli A. Elementi di un sistema di remunerazione virtuoso per le farmacie. ASI 2006; 37:12-3
7. Donzelli A. Un pagamento prospettico più evoluto e “virtuoso” per gli erogatori, alternativo al pagamento a prestazione. ASI 1999; 21:18-24
Additional Authors:
• Francesco Carelli, General Practice MD, Prof. of Family Doctors University of Milan, Italy
• Claudia Lattes, MD - Service of Education for Appropriateness and EBM of ASL di Milano, Italy
• Luigina Ronchi, Dr - Service of Education for Appropriateness and EBM of ASL di Milano, and Member of Board of Movimento Consumatori Milano – Italy
• Silvia Sacchi, Dr - Service of Education for Appropriateness and EBM of ASL di Milano, Italy
• Donatella Sghedoni, MD - Unit for Clinical Support in General Practice - ASL di Milano, Italy
Competing interests: No competing interests
We commend the authors of this report that highlight the increasing trend for overdiagnosis of medical conditions. The authors cite several examples and in particular certain endocrine disorders (1).
We would like to report that similar concerns for overdiagnosis and overtreatment need to be raised for vitamin D deficiency (2). At present there is no agreement as to the appropriate timing and frequency of testing for the diagnosis of 25OHD deficiency. We have recently reported that the cost of testing in Australia has increased from $1M in the year 2000 to $95.6M in the year 2010, or on average 59% each year. (3) A small report from the United States indicated that testing for 25OHD had increased by 80-90% per year. (5) Similarly, in Ontario, Canada testing increased 25-fold from 2004 to 2010. Projected figures from that report estimated that $150M will be spent on 25OHD testing in 2012, up from $38M in 2009. (6) Similarly, the United Kingdom has seen a six-fold increase in 25OHD tests between 2007 and 2010. (7)
Our data demonstrates that there has been an unsustainable growth in 25OHD testing across Australia over the last 11 years (see Figure). The consequences of our findings are widespread in terms of quality of care, unnecessary cost and potential overdiagnosis. Further studies are required to determine whether this increased testing translates into improved 25OHD status of the population and subsequent health outcomes. A worrying trend, however, is that despite the magnitude of the rise in 25OHD testing this did not translate into increased testing for osteoporosis, as evidenced by the flat trend in bone density measurements (Figure).
Guidelines are urgently needed to limit over testing and as a consequence over treatment for vitamin D testing.
1. Moynihan R, Doust J, Henry D. Preventing overdiagnosis: how to stop harming the healthy. Bmj. 2012;344:e3502.
3. Boyages S, Bilinski K. Seasonal reduction in vitamin D level persists into spring in NSW Australia: implications for monitoring and replacement therapy. Clinical endocrinology. 2012 Apr 3.
4. Bilinski KB, Boyages S. The rising cost of vitamin D testing in Australia: Time to establish guidelines for testing. Medical Journal of Australia. 2012;Accepted.
5. Singh RJ. Are clinical laboratories prepared for accurate testing of 25-hydroxy vitamin D? Clin Chem. [Letter]. 2008 Jan;54(1):221-3.
6. Mittelstadet M. Ontario considers curbing vitamin D testing. The Globe and Mail [serial on the Internet]. 2010.
7. Sattar N, Welsh P, Panarelli M, Forouhi NG. Increasing requests for vitamin D measurement: costly, confusing, and without credibility. Lancet. 2012 Jan 14;379(9811):95-6.
Competing interests: No competing interests
I share the authors' concerns about medicalisation, but would like to point out three omissions from their article.
First, a key question: who decides where the balance of harms and benefits tips into "overdiagnosis"? For the taxpayer, some screening and preventative treatments may be the most cost-effective use of NHS resources. For the patient, preference depends on the values she ascribes, for instance, to minimising risk of fractures versus risk of side-effects of osteoporosis treatment – to talk of "net harm" is simplistic. Obviously it also depends on the probability of these outcomes; combining this with values produces what game theorists call 'expected utility', the rational basis for such decisions and a concept which should have been central to the article.
Second, a clearer analysis: the big divide is between the two types of situation often medicalised, as described in paragraph two: current mild problems, and increased risk of future disease. Much of the article approaches the latter in a confusing way. Among many examples, screening programmes are mostly attempts to "prevent genuine illness", though obviously they may nonetheless be a poor use of resources; and several statements like "a substantial proportion …will never progress" seem to imply a wish for a crystal ball enabling us to treat only those certain to benefit.
Third, none of the 56 references is from the social science literature, where academics have considered these issues in depth for decades. For example, Armstrong [1] described how 'Surveillance Medicine' created new diagnoses (starting well before "the middle of the twentieth century"); Davison [2] wrote of lay understanding of the paradox that preventative measures can save lives within a group yet harm an individual; and Conrad [3] identified the changing drivers of medicalisation.
I hope that next year's conference will include speakers from disciplines outside medicine, so that rather than trying to re-invent the wheel, doctors can focus on using it in public health and clinical practice.
Louisa Polak, GP and research student.
1. Armstrong D. Political anatomy of the body. Cambridge University Press, 1983
2. Davison C, Davey Smith G, Frankel S. Lay epidemiology and the prevention paradox: the implications of coronary candidacy for health education. Sociology of Health & Illness 1991 Vol. 13 No.1: 1-20
3. Conrad, P. The Shifting Engines of Medicalization. Journal of Health and Social Behavior 2005 46: 3-14
Competing interests: No competing interests
The first article James D Cole [BMJ Rapid Responses 6 June 2012] cites is Offit et al 'Addressing parents concerns: do multiple vaccines overwhelm or weaken the infant's immune system?' [1] in which he notoriously proposes that an infant's immune system has the spare capacity to cope with the challenge of 10,000 vaccines at a time. The UK head of vaccines policy, Dr David Salisbury, took up the theme in a Newsnight programme in 2004 where he stated [2]:
"The immune system of a baby has got huge spare capacity to deal with
challenge. If we didn't, the human race wouldn't survive. But let's look
specifically at vaccine. This has been studied carefully. A baby's immune
system could actually tolerate perfectly well 1,000 vaccines".
However, he elaborated on this to me in an email exchange shortly afterwards and I reported in these columns [2]:
"I subsequently had the opportunity to ask Dr Salisbury about this
statement, and while I cannot quote him directly he made a distinction
between overload - which was the point that he was apparently making in
the interview - and the enhanced risk of adverse reaction which he
accepted would be the consequence of such an action."
What is possibly delusional - semantics aside - is that there is no risk to these products and that the risk does not necessarily escalate the more of them there are. So, perhaps the question is when a reassurance is not really a reassurance? It is, by the way, not easy to get compensation on the US Vaccine Injury Compensation Programme but nevertheless nearly $2.5b has been paid out since 1989 [3].
It is also rather obvious that any single one of these products can on occasion trigger an encephalopathy. As the Health Resources and Services Administration told Sharryl Attkisson of CBS News [4]:
"We have compensated cases in which children exhibited an encephalopathy, or general brain disease. Encephalopathy may be accompanied by a medical progression of an array of symptoms including autistic behavior, autism, or seizures."
Or as Julie Gerberding, late Director of the Centers for Disease Control, and now Director of Merck's vaccine division told CBS in relation to the Hannah Poling case [5]:
"Well, you know, I don't have all the facts because I still haven't been able to review the case files myself. But my understanding is that the child has a -- what we think is a rare mitochondrial disorder. And children that have this disease, anything that stresses them creates a situation where their cells just can't make enough energy to keep their brains functioning normally. Now, we all know that vaccines can occasionally cause fevers in kids. So if a child was immunized, got a fever, had other complications from the vaccines. And if you're predisposed with the mitochondrial disorder, it can certainly set off some damage. Some of the symptoms can be symptoms that have characteristics of autism."
A 2006 study disclosed that approx. 1 in 17 toddlers given MMR 2 developed a temperature 39.5C or greater. LeBaron, who works for the Centers for Disease Control, also recorded nearly one quarter of toddlers in the study (23%) were routinely vaccinated despite being unwell prior to vaccination with fever (7%), diarrhea (12%) and rash (7%). There was no follow to find out what happened to the children beyond 1 month after vaccination [6]
My own view is that a system which was actually listening would not be dismissive, and I was not reassured Lucija Tomljenovic's recent paper: 'The vaccination policy and the Code of Practice of the Joint Committee on Vaccination and Immunisation (JCVI): are they at odds?' presented to the British Society of Environmental Medicine: it evidences nothing better than a culture of sweeping things under the carpet.
It is, of course, very easy not to find things if you are not looking.
[1] Offit PA, Quarles J, Gerber MA, Hackett CJ, Marcuse EK, Kollman TR, Gellin BG, Landry S, 'Addressing parents' concerns: do multiple vaccines overwhelm or weaken the infant's immune system?', Pediatrics. 2002 Jan;109(1):124-9. http://pediatrics.aappublications.org/content/109/1/124.long
[2] John Stone, 'What David Salisbury said, and the DOH's position on multiple vaccine safety' BMJ Rapid Responses 20 September 2004, http://www.bmj.com/rapid-response/2011/10/30/what-david-salisbury-said-a...
[3] Health Resources and Services Administration, http://www.hrsa.gov/vaccinecompensation/statisticsreports.html#Note:2
[4] http://www.cbsnews.com/8301-31727_162-20016356-10391695.html
[5] CNN Transcripts, House Call with Dr Sanjay Gupta, Aired March 29, 2008 - 08:30 ET, http://transcripts.cnn.com/TRANSCRIPTS/0803/29/hcsg.01.html
[6] Charles W. LeBaron, Daoling Bi,
Bradley J. Sullivan, Carol Beck,
Paul Gargiullo, 'Evaluation of Potentially Common Adverse Events Associated With the First and Second Doses of Measles-Mumps-Rubella Vaccine', http://pediatrics.aappublications.org/content/118/4/1422.full
[7] Lucija Tomljenovic, 'The vaccination policy and the Code of Practice of the Joint Committee on Vaccination and Immunisation (JCVI): are they at odds?' BSEM conference 'The Hazards of Disease Prevention' March 2011, http://www.ecomed.org.uk/wp-content/uploads/2011/09/3-tomljenovic.pdf
Competing interests: Autistic son
John Stone (June 4th rapid response) asks whether the risks of over-vaccination ought to be considered by the authors. While he cites evidence to support his claims (regarding the number of vaccines children are expected to receive, the possibility of further vaccinations being added to the schedule, and the nature of the influenza nasal spray), he does not cite any evidence to support his suppositions that there is 'over-vaccination' or any link between vaccinations and either neurological impairments or chronic immune disorders - he merely raises potential concerns, and there appears to be nothing in Mr Stone's comment that provides any basis for any of these concerns.
Presumably, any imagined association between the number of scheduled vaccines and a purported increase in chronic immune disorders or neurological impairments could not be based on the number of antigens children receive from vaccination, as infants actually encounter fewer antigens in vaccines today than they did 40 or 100 years ago [1]. The authors also examine other aspects, including the theoretic capacity of an infant’s immune system. They conclude that "current studies do not support the hypothesis that multiple vaccines overwhelm, weaken, or “use up” the immune system". Perhaps Mr Stone has evidence to support the hypothesis that he would like to share? Or perhaps he has an alternative hypothesis?
It is also worth noting that while Mr Stone refers to "an exceptional proliferation of chronic immune disorders" in the context of the number of vaccinations children are scheduled to receive, Schattner [2] authored a paper on vaccination and autoimmune manifestations after viral vaccines in which he states that "'frequent' associations relate to a relatively small number of patients" which seems to be incompatible with any suggestion that vaccinations might be linked to "an exceptional proliferation of chronic immune disorders". Schattner also states that whenever controlled studies of autoimmunity following viral vaccines were undertaken, no evidence of an association was found and concludes that "for the overwhelming majority of people, vaccines are safe and no evidence linking viral vaccines with type 1 diabetes, multiple sclerosis (MS) or inflammatory bowel disease can be found". Zingg [3] notes that "in large controlled trials there was no proof that vaccination causes asthma, hepatitis-B-vaccination causes multiple sclerosis or macrophagic myofasciitis, Hib-vaccination causes diabetes mellitus, rubella-vaccination causes chronic arthritis, measles-mumps-rubella-vaccination causes gait disturbance or thiomersal causes autism", the authors of another paper [4] looked for an association between asthma and vaccination - and found no such association - and Rümke and Visser [5] write that "during recent years a scala of diseases or symptoms have been associated with vaccination (presumed side effects). Careful and extensive investigations have shown that such hypotheses could not be supported. Examples are allergic diseases as asthma, diabetes mellitus, multiple sclerosis (after hepatitis B vaccination), autism and inflammatory bowel disease (after MMR vaccination) and sudden infant death syndrome."
Mr Stone refers to "unexplained neurological impairments" but does not tell us which neurological impairments he has in mind and gives no hint as to why he thinks the number of scheduled vaccinations might explain or partly explain them. He doesn't provide any basis for his implication by providing any evidence - nor does he suggest a plausible mechanism.
I can see nothing in Mr Stone's comment that adds to the debate on overdiagnosis and I struggle to see how vaccination against infectious diseases is relevant to the debate. Aside from the issue of the advisability of the proposed influenza nasal spray (and, while the issue of an alleged poor history of identifying correctly the proliferating flu strain of the following winter is interesting, I wonder whether Mr Stone could tell us about recent success rates of matching circulating v vaccine strains), I can find nothing of substance in Mr Stone's comment that might be addressed by others - the only things we know from his comment are (a) how many vaccinations children are currently scheduled to receive and (b) that the number might be increased. There is nothing there to suggest that either the number of vaccinations is currently too high or that it might be too high with the addition of the vaccines he refers to.
[1] http://www.ncbi.nlm.nih.gov/pubmed/11773551
[2] http://www.ncbi.nlm.nih.gov/pubmed/15917108
[3] http://www.ncbi.nlm.nih.gov/pubmed/16277033
Competing interests: No financial interests. I have a personal interest in that I have previously been critical of the anti-vaccine movement.
I note the authors' definition of overdiagnosis includes "people without symptoms ... diagnosed with a disease that ultimately will not cause them to experience symptoms or early death".
In my limited experience I believe that, despite good end of life care, overdiagnosising may occur in that sub-population that are symptomatic and do have a separate condition for which there is treatment, but who are already at a point where treatment would not significantly improve life expectancy or quality of life.
I have been called to take blood from octogenerian patients with cardiorenal syndrome and painful swollen arms. The phlebotomist had failed, the nurses had failed, and I am sorry that I failed too. In the midst of rushing between wards, I took some time to talk to the patients about why they didn't want any more needles and blood tests, and I realised I might have crossed the fine line between doing good and doing harm.
If the cause to prevent overdiagnosis includes a focus on those who are not necessarily healthy but who would not benefit from another new diagnosis, could it serve as a useful evidence-based approach to improving quality of end of life care?
Competing interests: No competing interests
Moynihan and colleagues provide an important and timely update on the evidence of harm associated with earlier detection and wider definition of disease - processes which “reclassify healthy people with mild problems or at low risk as sick”.(1) Their planned 2013 conference will discuss work to prevent the problem including refinement of diagnostic categories, along with development of new educational packages and protocols of care to improve the diagnostic process. Their article should perhaps be compulsory reading for all involved in clinical decision making – from students and practitioners of medicine to those informing and deciding health care policy and strategy.
We should also recognise that the ever wider use of disease models to define health need and determine health care can also cause harm to those who aren’t ‘healthy’ (2) – for example those living with Medically Unexplained Symptoms, complex mental health problems, and multiple morbidity (2-6). The problem lies not just in the diagnostic process itself, but arguably in the disease model that lies behind it. Indeed in 2004, Tinetti and Fried argued that the “time has come to abandon disease as the focus of medical care” (7). Recognising similar issues of over-, under- and mis-treatment they highlighted the growing complexity and uncertainty characterising modern illness experiences and health care need. They called for a shift from a disease-oriented model of care to an integrated, individually tailored model.
Generalism refers to a person-centred approach to understanding health need and delivering care, and is the philosophy of practice underpinning the work of General Practitioners and Family Physicians (8). The generalist approach recognises need for care derived from a personal experience of illness, rather than simply the presence or absence of disease (2). Generalists recognise that just as disease can cause illness, so can illness cause disease (2). A specialist view of health need asks, does this patient meet the diagnostic criteria for a given disease, and if so is it appropriate (safe) to treat? The onus is on justifying exempting an individual from disease-defined care. By contrast, the generalist asks (how) does a disease-model help us understand and address the health and illness needs of this individual and at this time? The onus is on justifying a decision to instigate medical intervention.
Generalists hold deep tacit knowledge about the benefits and risks – to individuals as well as society – of using biomedical disease categories to understand personal (subjective) illness experience (9). The expert generalist works with a patient to negotiate care which best suits their individual health and illness needs at this time (10). This aspect of generalism has been described as Interpretive Medicine (2), and supports a description of generalist decision making as person, not disease, oriented; with a continuous rather than an episodic focus; integrating biomedical and biographical understanding of illness; in order to support health as a resource for living (10) (see Figure)
Generalists are experts in personal illness care.
Moynihan and colleagues highlight “deep faith in medical technology” as a significant driver behind the problem of overdiagnosis (1). This perhaps also lies behind the driver to greater specialist, disease-focused, over generalist (person-focused) care . Current systems serve to create an environment which undermines the role of generalism (11). A recent survey of the future of Primary Health Care in the Americas revealed concerns that the “future of family medicine is classified as doubtful, pessimistic or distant” in some countries. Now more than ever (12) we need to engage the wider health care community in a critical discussion of the nature and value of a generalist approach within quality systems of person-centred health care. To describe what generalist care offers that is ‘different and better’ to other forms of care (13) – and before we lose the capacity to choose.
Generalism has been described as being “deeply known” by practitioners around the world (14). Rich descriptions of this professional philosophy of practice have informed practitioner views on effective health care, on professional training, and on practices which support the delivery of care. But generalism is an approach which is not widely understood outside of the profession – by patients, other health professionals, managers, policy makers, researchers and politicians. As such it is “often overlooked in the fragmented world of modern healthcare” (14). Generalist care has not done enough to demonstrate when and how it is “different and better” to alternative approaches (13).
There is a growing body of work which seeks to address this gap. The UK Royal College of General Practitioners have commissioned a report on the future of Medical Generalism (15), and the College response is expected shortly. The North American Primary Care Group (NAPCRG) Special Interest Group on ‘Developing Generalism’ was formed in 2011 to support the critical development, delivery and evaluation of generalist care within a modern managed health care context. The SIG is an international collaboration with representatives from North America, Australia and Europe. The aims of the group are to raise awareness and understanding of the work of generalists amongst a wider stakeholder community; develop critical understanding of the work of generalists in the context of modern health care; through supporting shared scholarly activity amongst clinicians and academics from multidisciplinary backgrounds. We meet in New Orleans in December 2012 to review progress.
The NAPCRG SIG shares the goals of the Preventing Overdiagnosis group to develop “evidence to help us all make more informed decisions about when a diagnosis might do us more harm than good” (1). We welcome discussions with the Preventing Overdiagnosis group and other BMJ readers with interests in this area.
Joanne Reeve
GP and NIHR Clinician Scientist
Chair of NAPRCG SIG on Doing Generalism
joanne.reeve@liv.ac.uk
1. Moynihan R, Doust J, Henry D. Preventing overdiagnosis: how to stop harming the healthy. BMJ 2012; 344:e3502.
2. Reeve J, Lloyd-Williams M, Payne S, Dowrick C. Insights into the impact of clinical encounters gained from personal accounts of living with advanced cancer. Primary Health Care Research & Development 2009; 10(4): 357-67.
3. Salmon P. Conflict, collusion or collaboration in consultations about medically unexplained symptoms: the need for a curriculum of medical explanation. Patient Education and Counselling 2007; 67: 246-254.
4. Dowrick C. Beyond depression: a new approach to understanding and management. Oxford: Oxford University Press, 2009.
5. Reeve J, Lynch T, Lloyd-Williams M, Payne S. From personal challenge to technical fix: the risks of depersonalised care. Health and Social Care in the Community 2012; 20(2): 145-154.
6. Reeve J. 2010. Interpretive Medicine. Supporting generalism in a changing primary care world. Royal College of General Practitioners Occasional Paper Series, 88.
7. Tinetti ME, Fried T. The end of the disease era. Amersican Journal of Medicine 2004; 116: 179-185.
8. Gunn J, Naccerella L, Palmer V, Kokanovic R, Pope C, Lathlean J. 2007. What is the place of generalism in the 2007 primary care team? Available at http://aphcri.anu.edu.au/content/stream-six-workforce/what-place-general...
9. Heath I. Divided we fail. Harveian Oration, Royal College of Physicians 2011. Available at http://www.rcplondon.ac.uk/resources/harveian-oration-2011
10. Reeve J, Irving G, Dowrick C. Can generalism help revive the primary health care vision? Journal of the Royal Society of Medicine 2011; 104: 395-400
11. Hunink MM, Galziou P. Decision making in health and medicine: integrating evidence and values. Cambridge UK: Cambridge University Press, 2001
12. WHO World Health Organization. Primary Care. Now more than ever. Geneva: WHO, 2008. See http://www.who.int/whr/h2008/whr08_en.pdf
13. Kings Fund. Improving the Quality of Care in General Practice. London: The Kings Fund, 2011.
14. Stange K. The Generalist Approach. Annals Fam Med 2009;7:198-203
15. Guiding Patients through Complexity: Modern Medical Generalism. Report of an Independent Commission for the Royal College of General Practitioners and the Health Foundation. London: RCGP, 2011. See http://www.rcgp.org.uk/policy/commissn_on_generalsm.aspx
Competing interests: No competing interests
It is significant that among the 56 references (in English language) mentioned by Ray Moynihan, Jenny Doust and David Henry, the oldest one is dated 1997. I suggest the addition of several old authoritative French references, particularly: "Jules Romain. Le Docteur Knock ou le triomphe de la Médecine. Gallimard. Paris 1923". The watchword of Dr Knock was: “Les gens bien portants sont des malades qui s’ignorent”.(See Google translation).
Competing interests: No competing interests
Preventing overdiagnosis: how to stop harming the unhealthy - preventing under diagnosing due to over diagnosing
The authors and responders of this article have done a wonderful job in analysing this issue and evoking such wonderful comments to this article which proves that the issue is omnipresent in every field of medicine. But in ophthalmology I have personally seen a unique phenomena with regards to glaucoma over diagnosis causing under diagnosis of other serious neurological conditions . Over diagnosis of glaucoma has been reported to be extremely high, as high as 41% in some cases (1). Many consequences for patients and health care services have been discussed already by some authors (2) Newer more sensitive tests have been implicated and many ways of integrating clinical skills with tests have been suggested (3) The costs of over diagnosis are enormous (4) But one alarming issue that I have encountered is masking of other diseases and the under diagnosis and worsening of other neurological diseases because the patient's anxieties have been managed and field defects have been explained with the diagnosis of glaucoma.
Here the issue noticed by me is that the routine test ordered for visual field is SITA. Standard SITA testing algorithm tends to make all field defects look like glaucomatous field defects due to the manner in which the arcuate areas are tested with priority and assumptions are made in the algorithm due to which in some of our patients visual field defect pathognomic of pituitary tumour or anterior ishaemic optic neuropathy seems to mimick glaucomatous defects in the SITA algorithm in visual field. In a few cases we have had pituitary tumours grow to enormous size while the patient is erroneously using anti glaucoma medications and with progression of field defect an additional drug is instituted instead of review of diagnosis. Many others have lamented that misinterpretation of visual field leads to misdiagnosis and over treatment of glaucoma leading to under diagnosis of neurological conditions and the subsequent visual impairment and morbidity is preventable (5). Some editorials blame the hard selling by pharma companies (6). Nevertheless we have realised that whatever the cause of over diagnosis of glaucoma the issue of under diagnosis of neurological defects is real and not without serious consequences of irreversible visual loss and many a times serious morbidity as well as mortality. So not only do we need to deal with economic costs of over diagnosis but also with under diagnosis of neurological conditions mimicking glaucoma field defects.
1: Zemba M, Cucu B, Stinghe A, Furedi G, Zugravu V, Lacusteanu M. [Overdiagnosis in glaucoma--a real problem?]. Oftalmologia. 2008;52(3):81-6.
2: Detorakis E, Symvoulakis E. Over-diagnosed glaucoma:possible consequences for patients and health care services. Hippokratia. 2011;15(4):381-382.
3: Garway-Heath DF, Friedman DS. How should results from clinical tests be integrated into the diagnostic process? Ophthalmology. 2006 Sep;113(9):1479-80..
4: Vaahtoranta-Lehtonen H, Tuulonen A, Aronen P, Sintonen H, Suoranta L, Kovanen N, Linna M, Läärä E, Malmivaara A. Cost effectiveness and cost utility of an
organized screening programme for glaucoma. Acta Ophthalmol Scand. 2007Aug;85(5):508-18.
5: Choudhari NS, Neog A, Fudnawala V, George R. Cupped disc with normal intraocular pressure: The long road to avoid misdiagnosis. Indian Journal of Ophthalmology. 2011;59(6):491-497. doi:10.4103/0301-4738.86320.
6: Nayak BK, Maskati QB, Parikh R. The unique problem of glaucoma: Under-diagnosis and over-treatment. Indian Journal of Ophthalmology. 2011;59(Suppl1):S1-S2. doi:10.4103/0301-4738.73677.
Competing interests: No competing interests