Tag Archives: Symptoms

Can healthcare providers be more supportive?


Most people who get cancer survive. The treatment now available means they are likely to die, years later, of some cause other than cancer. That’s great news. Unfortunately in many cases the intervening years may be punctuated by symptoms or problems that are related to the treatment. So cancer like many other human ailments is a ‘chronic’ illness rather a problem that is ‘cured’. For cancer it is likely that one group of doctors will offer treatment (specialists) but another group of practitioners (generalists) will be called on if there are problems later. The experience of many people in these circumstances is that a lot more could be done to help after treatment. Our team recently conducted a series of studies to explore what happens, from the practitioners’ perspective, given that one might want to develop interventions to assist them do a better job. In one study we focused on prostate cancer, you can read the paper and watch a video of how men might present to their doctors here. As we deployed simulations, no patients were harmed in this study. I present the results with reference to a map offered in an earlier blog. The analysis below pertains to how doctors respond.


A: Rewards for action

For the most part men in these circumstances are unlikely to present with symptoms that are only ever a feature of recurrence or treatment side effects. It was accepted in our research that many of the problems presented (sexual dysfunction,anxiety and depression) were common in general and therefore subject to the same remuneration as other primary care visits. There were some scenarios that were considered outside the generalist scope of practice including radiation proctitis. However in these circumstances it was also accepted that such patients needed generalist investigations before specialist referral. It was interesting that rural practitioners were more attuned to expert opinion.  We speculated that they have greater involvement in supporting men in these circumstances compared to colleagues with much easier access to major hospitals.

T: Timeliness

We did not explore the time taken by such consultations. However this is likely to be similar to many other such problems that are presenting outwith the context of a cancer diagnosis.

R: Risk

Some scenarios, for example one in which a man presented with a raised level of ‘tumour marker’, proved very problematic for some respondents who immediately, and unnecessarily, referred for specialist advice. The doctor’s fear of missing a recurrence rendered it more challenging for the person living with the diagnosis to receive the strong reassurance that was indicated.


C: Cost

Referral for treatment of problems related to treatment or recurrence may be problematic in these circumstances. For example we could not assume that every practitioner had easy access to a radiation oncologist. This may have resulted in a financial burden on the patient or to referral for less than ideal treatment.


Some consultations required referral to, or discussion with,specialists or the organisation of tests and subsequent follow up with results. Some patients required referral to a very specific service- this was sometimes omitted. Although it is possible this was due to lack of knowledge it is also likely that such services were not available to those practitioners. In the case of practitioners from rural areas this was almost certainly the case.


P: Recognising the patient

In a significant proportion of cases doctors missed the diagnosis. Unfortunately not every practitioner offered the best treatment options.  Others focused only on the cancer as a cause of the symptoms. The intervention we offered improved diagnosis but not management of cases.

K: Knowledge of options

It was not clear from our data if doctors were aware of the treatment options for all scenarios in these circumstances.


There is  scope to ensure that people are more supported after a diagnosis and treatment of a potentially life threatening condition. They often present with problems that are not unique to those with the condition. Doctors may have to spend more time with them in these circumstances and also need to be more proactive in assessing their needs. In many cases reassurance is all that may be required by a knowledgeable practitioner. In other cases access to the most appropriate treatment will determine the degree to which practitioners can be responsive to needs. Motivation is high, ability could be improved and a trigger that identifies the patient and their options may help to ensure that practitioners fulfill their obligation to support people in these circumstances.

Picture by Andrew Currie.

Innovating without inventing something new

9562611683_cd9584baca_zI’m a pathologist, which means that I run the lab, and I’m continually shocked by all the unnecessary lab work that comes my way. Doctors have to find something wrong with you, because preventative measures aren’t sexy. They know that you’re more likely to appreciate them if they tell you something’s wrong, than if they tell you to stop drinking 40 oz sodas. Humans of New York

This week a report was released that documents changes in Australian GPs’ ordering of X-rays and scans in the decade 2002- 2012. The report includes an evaluation of the quality of GP test ordering against available guidelines. The team compared two periods: Apr 2002- March 2005 inclusive (Period 1) and April 2009 to March 2012 inclusive (Period 2). Three factors were found to be relevant:

  • The number of encounters between doctors and patients
  • The number of problems managed at encounters
  • The rate of ordering tests in the management of problems encountered

It was not surprising that people are attending doctors more often and that they are presenting more problems than before. However the rate of imaging tests ordered significantly increased from 8.7 per 100 encounters in Period 1, to 10.2 per 100 in Period 2. Extrapolation of this result suggests an average 8.45 million imaging tests ordered by GPs per year in Period 1 and 12.23 million per year in Period 2, an increase of 44.7%, equating to approximately 3.78 million more orders per year over the 3 years in Period 2 than in the years of Period 1. With respect to the guidelines current ordering behaviour for new back problems, shoulder sprains/strains, knee problems, and knee sprains/strains, has room for improvement, according to the researchers.  The results were not entirely unexpected. There has long been a concern about unnecessary test ordering. In a paper published in 2008 unnecessary laboratory tests may be defined as those that have a ‘vanishingly small’ chance of:

  • revealing any unexpected pathological process.
  • contributing to the diagnosis of the cause of a patient’s presenting symptoms.
  • assisting in the monitoring of the progress of a known pathological process.
  • helping to assess the management of a known disease process.

An interesting insight is offered:

The millions of dollars spent on unnecessary tests are, in [doctors’] minds, balanced against the tens of millions involved in adverse court judgments.

In this context I recently asked colleagues what test they would perform on me if I presented as ‘tired all the time’, adding that I had no physical signs, was not depressed and was not taking anything (prescribed or otherwise) that would account for my fatigue. The answer was unanimous-‘Thyroid function test’. This was based on published advice on the approach to such patients:

However, even though laboratory evaluations rarely play a crucial role, they should be used to exclude underlying organic illness.

So, I asked my colleagues how they would interpret the findings if my results were found to be just over the limit of normal. What, in their view was the probability that I have hypothyroidism? ‘High’ came the answer. ‘We would put you on thyroxine.’ The published data suggests that the positive predictive value of tests on people in this context is  less than 12%. Which means it is highly unlikely that I have anything physical wrong with me, much less that I need to take thyroxine. At a time when there is an increasing demand for GP services, it is going to be helpful for colleagues to be aware of the positive predictive value of the tests they order and to share that information with patients before recommending tests. The article listing laboratory tests to screen for a host of highly unlikely conditions assumes that the doctor has spoken to and examined the patient and that the indications for the tests are based on specific clinical findings.  In most cases the patient who has a life limiting pathology does not look or feel well. However every patient needs to know what the test results mean- they are often meaningless and place the patient in harms way. The approach in the Dutch paper to postpone tests for 4 weeks resulted in benefit to people with unexplained fatigue who may otherwise have been harmed by further investigation of equivocal test results. The study is testimony to what  can be achieved by practitioners sharing information with patients while harnessing the power of observation, applying a little bit of science and dispensing a tincture of common sense.

Picture by Send me adrift.

Managing demand for primary care

Why do people consult doctors? At first glance because they feel unwell. However research suggests that the reasons are far more complex than that. Innovators also know that the answer to this question is vital for those seeking an agile, intuitive, creative and cheap solution to the demand for their services. Theories predict the consultation habits of many patients. I especially like this summary:

The overall prevalence of symptoms in the community is not closely related to general practice consultation rates, and the consulting population is a selected population of those who are in need of medical care. The literature reviewed suggests that poor health status, social disadvantage poor social support and inadequate coping strategies are associated with higher consultation rates. Some populations subgroups may experience particular barriers to seeking care. Campbell and Roland

Innovators might also ask why are those patients sitting in my waiting room? I remember a hoary old tale of a doctor who was feeling especially grumpy one day and stormed through the waiting room announcing that anyone who thought they had a ‘real’ problem should stay everyone else should go home- half the waiting room emptied.

It seems quite a few people who go to doctors will have symptoms- however a proportion will be back there by invitation. How big a proportion and why have they been invited back? There are many reasons to schedule a repeat appointment. It conveys the notion that the patient will be harmed if they don’t see a doctor on a given day for one or more of these reasons:

1. Their response to treatment is unpredictable and the dose or drug may need to be revised

2. They have a condition that can’t be diagnosed or may progress or need additional measures by a specified date

However other reasons for requesting a review include:

1. The doctor isn’t confident that the diagnosis is correct and wants a chance to review the advice issued.

2. The patient is required by someone (e.g. an employer) to produce evidence of a visit to a doctor

3. A full waiting room ensures the doctor looks busy for whatever other reason.

4. The doctor needs to reinforce the impression that the condition has been taken seriously.

The time cost for doing everything that could possibly be recommended for patients with chronic conditions  has been shown to be untenable. Either the guidelines are wrong or a different solution needs to be found for at least some of these people. What is the evidence for asking a patient to return within a week or two with a specific new condition and within a month with a longstanding condition?

There is a need to be proactive in some cases. However is it possible that we encourage people to attend for review appointments when there is a low probability that they will benefit? Are there other reasons to fill the waiting room?

The most successful health innovation ever

What medical innovation is:

1. Available worldwide
2. More likely to yield a diagnosis than an X-ray
3. Cheaper than the cheapest stethoscope
4. Requires less training to operate than a tendon hammer?

Answer: A tongue depressor

Why? Because when deployed within the context of a medical consultation- when the practitioner gives the patient their undivided attention, the tongue depressor forges a relationship that may lead the patient to express their deepest concerns. In what other social context can you shove a piece of wood into someones open mouth and get them to say ahhh? A few years ago I consulted a fifty year old mother of five, working as a supermarket check out assistant complaining of a sore throat. We talked about how awful she felt and how she was struggling to cope with her job, how she gets frequent bouts of tonsillitis and how she was afraid her boss would sack her. She had a mildly red throat and I thought I could feel a couple of tender lymphnodes in her neck but her temperature was normal and I remember thinking I’d seen worse earlier that day. Then as I turned around to write a prescription she burst into tears and said-

‘There’s something else I need to tell you doctor. I’m now working as a prostitute because for the first time in ten years I haven’t been able to afford my kids school books.’

That was not what I expected to hear, or anything they told me at medical school could result from examining a throat. That consultation took a very different direction, she was screened for other infections and was fortunately negative. We then talked about her dilemma and she decided there may be better ways to furnish her kids with what they needed for school.

There is very little evidence that the appearance of the throat aids the diagnosis in most cases- even a viral sore throat can mimic a bacterial infection. In any case in developed economies penicillin does not help the patients recover much quicker. However, anyone with a sore throat who consults a doctor expects to be examined. Besides why do people seek medical advice about pharyngitis? It is common knowledge that in most cases a couple of paracetamol, fluids and rest is the only effective treatment. In many cases people are expressing concern about some other aspect of their life when they present with minor self limiting illness. What people say, if you are receptive is

‘I’m unhappy, I’m worried, I’m bored, I’m feeling guilty, I’m tired or I’m not coping and this discomfort is the last straw.’

That’s one of the myriad of reasons that general practice is the most challenging medical specialty, nothing is necessarily what it seems at first glance.

Innovations don’t need to be high tech or expensive- a tongue depressor costs 13 cents. That doesn’t mean that in the right hands such simple equipment is not extraordinarily powerful. There are tools we seldom do without- a stethoscope is vital and not only because of what we can hear when we put it to the chest.

Rethinking The Benefits Of Expensive Medical Research

In the developed world the really scary diagnoses are very uncommon. More often than not a patient’s symptoms can be safely interpreted as benign. This has engendered a false sense of security because there is evidence that doctors fail to recognise presentations of some nasty diseases.

Innovators in medicine have been focused on this problem for some time. For example a research team reported in 2009 that skin cancer was much easier to diagnose with the aid of a handheld device that draws attention to cancerous changes. The problem however is that doctors need to attend a course on dermatology and take an exam before it is safe to let them lose on people with the instrument. The published report was upbeat despite the fact that one in three doctors didn’t complete the required training. The outcome of this research (and many other research programs funded using millions in taxpayer dollars), was an academic paper that will never impact on the early diagnosis of the disease.

Less than five years later some of the same team were back to test a simpler device but with a similar requirement for education of doctors before successful deployment. The negative results were hardly surprising. The team concluded that cancer was more likely to be diagnosed early if doctors followed guidelines.

History has taught us that just because an intervention may be of benefit to patients, that doesn’t mean it is likely to be embraced by overburdened care providers trying to earn a living. The most successful innovators understand the need to tailor interventions to meet the needs of both the health professional and her patient. They realise that tools that are inconvenient or cumbersome are doomed to novelty status.

Committees that determine which ideas are worthy often deny the lessons of agile, intuitive, creative and effective innovations. These are more likely to be reliable, developed relatively cheaply and don’t need an instruction manual.
How hard is it to adopt your innovative ideas in practice?

Innovating at the interface between service providers

At least one in a hundred patients seen in general practice are referred to hospital.

In many countries the referral process hasn’t changed in decades. It’s still done with pen and paper and even in 2013 in some developed countries it still involves a fax machine. What’s interesting about the process is that once the letter is received at the hospital, it is read and then triaged by someone to determine when the patient should be offered an appointment. The decision is made in less than a minute. Everything, perhaps even life or death situations. hinges on the impression created by the writer of that letter.

In a government subsidised system, where there is a need to ration appointments, a patient might be seen next week, next month or six months from now. The reality is that in some cases a patient might wait longer than is ideal and the outcome for them may be compromised, because of what was in the referral letter and how that was interpreted. Who then is to blame, the doctor who was consulted first, or the hospital that arranged a deferred appointment? How can innovation help in this situation?

I’ve been involved on teams that have studied this problem from many different angles culminating in a randomised trial of an innovation in 2012. We came to a number of conclusions. Firstly involving people in innovation when they don’t believe they have a problem is frustrating. Many doctors think their letters are just fine, or that the recipient hardly reads them. Its difficult to innovate in a busy clinic where doctors are working flat out, and the truth is that if the innovation doesn’t make life easier for the doctor as well as the patient then it’s going to be hard to implement.

Secondly colleagues are reticent to demand change from one another, especially when they work in different parts of the system. So, as a hospital specialist I might not feel I have any mandate to require that referral letters contain the details that I like to have. It’s even worse when the paymasters across the sectors are different. In Australia hospitals are funded by State governments, whereas primary care is funded by the Federal government. What’s more primary care providers work to a ‘pay for service’ model. Which effectively means that primary care survives on profits.

Thirdly, it is unsafe to assume that all colleagues apply the same criteria about what clinical scenarios should be allocated an urgent specialist opinion, even within the same specialty, in the same healthcare system, and with reference to nationally accepted guidelines. That was unexpected!

Some problems require a whole systems approach. A problem that has seemingly obvious roots, with a strong(ish) evidence base can be difficult to crack with a lean medicine approach. Where multiple individuals are involved across health sectors, it is absolutely necessary that innovations make everyone’s life easier. Requiring letters to be written a certain way, and demanding that the process is enforced by the recipients, when there isn’t local consensus on what is an urgent case, is not going to work without something else to make it worthwhile for all concerned. What this problem calls for is more innovation when it comes to making the decision to refer. Perhaps more sensitive near-patient tests, which are better able to predict who is most likely to benefit from limited national resources.

What are your ideas for improvement that don’t require people to donate time and effort for no personal gain? Pushing out innovation is not enough, if there isn’t a pull from those at the coalface to adopt those ideas. It isn’t safe, even in medicine, to assume that people will do it, use it or promote it simply because they recognise that patients will benefit.

Innovating in cancer diagnosis and treatment

The experience of someone with cancer is a litmus test of a country’s healthcare system. Let me explain:

Cancer Symptoms

The symptoms of many cancers are very like those of many more benign conditions. Take colorectal (bowel) cancer. People who develop this disease present with symptoms that many of us have had at some point in our lives—diarrhoea, rectal bleeding, abdominal pain and fatigue. You would imagine that the symptoms of bowel cancer are far worse than anything following a suspect meal. In some cases, yes, they are. In many cases those who develop widespread, incurable disease have quite minor and short lived symptoms.

Despite the wide availability of screening tests, the majority of bowel cancer diagnoses in the developed world happens after presenting to a doctor with symptoms. Those who are ‘lucky’ present with lots of symptoms, but have a curable cancer. Many patients present with late and incurable disease, sometimes with relatively minor symptoms. Studies of people who turn up with symptoms, suggests that there are patterns that describe cases more likely to have the condition. However these patterns are not reliable and in many cases the chance of being diagnosed with cancer, despite the ‘data’ is, thankfully, relatively small. That means that of all those who present with symptoms for the first time, it is the communication skills of the doctor they consult that determines if that person is identified as someone who would benefit from a colonoscopy. But also , crucially, whether the person who is at no risk at all is subjected to a colonoscopy.

The reality seems to be that more people have a colonoscopy, than benefit from the experience. The greatest gripe in many health care systems is that people are left to languish on waiting lists. The finger is pointed either at primary care for selecting too many patients for referral, or at hospitals for not providing enough clinics. In my view the truth is that neither is to blame. Humans vary in their ability to seek help, they vary in their ability to apportion limited resources and in the end the system depends on people. Our human frailty is the weak link.

Cancer Treatment

Once ‘in the system’ the patient is subjected to all that can be offered by the King’s horses and men. Large sections of their anatomy may be removed. Chemicals and radiation may be administered, and weeks if not months of their lives may be spent in an alien, clinical environment. Here they have to adjust to life without the familiar and predictable. Many make a full recovery, which is testimony to the resilience of human beings. Some don’t make it and the rest never fully recover, if not from the cancer, then from the effects of the efforts to save their lives. While being treated they are segregated from their families, their support structures, including their family doctor, who will be consulted in the future, about the diarrhoea, the fatigue, the urinary and sexual dysfunction and the fear of recurrence that may be a feature of life after bowel cancer.

Cancer Support

What happens after this ordeal is that people either recover fully and rarely need to think about it again, or continue to suffer debilitating side effects related to the assault on their physical, psychological and social self. In these circumstances the health care system is either supportive and offers all manner of ‘interventions’, or barely supports people who have been ‘cured’ of cancer and now need to get their lives back on track. When the health sectors are divided along funding lines, as is the case in Australia, the scope for it to be someone else’s job are greatly increased. In these circumstances we can detect so-called ‘unmet need’.

Innovation In Cancer Care

Academic careers are being made of documenting all of this. It sounds like chronicling what common sense already tells us. It’s about lack of knowledge, unhelpful attitudes and questionable beliefs. But as a proponent of ‘lean medicine’, I wonder if those who refer people for life saving treatment and then pick up the pieces have something to offer? Can we generate solutions, rather than apply for yet more tax payer’s money to explore what our patients and colleagues are already telling us? The challenge is that we already have a growing demand in primary care, based on the rising incidence of chronic and complex conditions, consequent to an aging population and poor life style choices. How can the care of these patients be improved without relying on people recognising it as simply ‘the right thing to do’? How can we generate a solution that makes life better for everyone. Failure to do so has brought us to the current impasse, and the aforementioned ‘unmet need’. A lean medical solution will allow people to access, and assimilate more information about their symptoms, their treatment and life after treatment. Perhaps it will empower practitioners to be more proactive, without having to increase an already overburdened health work force?

What are your ideas to improve things for the one in four people who will develop cancer in the course of their lives?

Symptom or disease? The four circle rule.

Four Circles for innovators in Lean Medicine
Four Circles for innovators in Lean Medicine
Most people with symptoms don’t seek medical advice. Those who choose to make an appointment with a doctor are more likely to have a disease and those who are referred to a hospital specialist are even more likely to have pathology. Lean medicine takes account of Bayes’ theorem that demonstrates this simple truth mathematically.

I like to think of it as ‘the four circles rule’.
This schematic tells us that many people with pathology do not seek medical advice and some don’t even have symptoms. It also tells us that doctors have to find those with pathology from among the many who do seek their advice. Often patients present with a host of problems, so that the four circles become 8, 12, 16 or even 20 different circles, one set for each condition.

My team have applied this principle to study people with bowel symptoms. It is a fact that most people with bowel symptoms do not have pathology, or at least not cancer. Epidemiologists have identified groups of symptoms which when they occur together are most likely to signify pathology. This isn’t always reliable and there are lots of false positives, leading to anxiety among the worried well. On the other hand it is also true that people with pathology may or may not seek medical advice. The latter is especially true of men who find discussing their bowels embarrassing. Sometimes so much so that they don’t mention the diarrhoea or rectal bleeding to anyone, least of all their doctor. The consequences are that in some cases they delay seeking help for potentially life limiting disease until it is too late for curative treatment.

We also know that colorectal cancer is diagnosed in most cases only after the patient has developed symptoms and sought medical advice. Only a minority of cases are diagnosed from among those with no symptoms who have been screened for the disease. Whatever the case the sooner a diagnosis is made the better the chances of successful treatment. Because the symptoms can be so embarrassing and to some extent because some men procrastinate with seeking advice colorectal cancer has a worse prognosis in men.

It’s in situations like these that innovations which are low cost, personalised and offer creative solutions to healthcare problems come into their own. The focus could be to provide opportunities for as many people as possible to get convenient, reliable, personalised information in privacy without necessarily going to a doctor. What’s more such an innovation needs to make life easier for the practitioner and the patient.