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Your idea could save lives

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You don’t have to see the same doctor twice. In fact you don’t even have to go to the same practice. Come to think of it you don’t even have to go to a practice. In many countries including where I work you can dial-a-doc. He or she will turn up Uber taxi style. All you have to do is make the call. There is a cost of course. That’s the whole point. But is medicine a special case? Choice is a good thing but is there a down side to the commercialisation of health care?

Suppose you experience some worrisome condition. Something that isn’t painful but shouldn’t be ignored. Let’s say you notice blood in your pee. You might go to a doctor eventually because you, quite rightly, decide you need to find out what’s causing it. You go to the first doctor who can see you. It might not be the one you’ve seen before and if you are worried enough you might even go across town to someone who can ‘fit you in today’. The doctor might order a test or two. Possibly ask you to provide  sample of your urine, perhaps organise some blood tests and may be recommend a scan. The next day the blood is not so obvious and you think there is no need for all this fuss. Either that or you have the tests and they come back negative or you decide that there is no need to make another appointment with the doctor when the blood seems to have disappeared. You breathe a sigh of relief and leave it there. No need to worry. But of course there is. Painless frank haematuria warrants thorough investigation.

Understand, however, that hematuria may be intermittent in patients with significant urologic disease and a repeat urinalysis should be obtained if the clinical suspicion is present. American Urological Association.

If you are a doctor reading this:

  • How does your practice deal with the possibility that people may fail to follow up positive test results?
  • What is your policy for people who have negative test results in the context of significant clinical signs or symptoms?
  • How do you take into account the possibility that a patient may fail to attend for investigations for reasons various?

In some countries it is easier to track people who fail to turn up or return after tests. In other countries it is up to the practice to have a fail-safe mechanism. In healthcare, occasionally, the ‘customer’ falls between the cracks and the consequences can be a delayed diagnosis or worse. First and foremost  it requires the service provider to know the circumstances in which it is prudent to go the extra mile. If you work in a place where it may be possible that people might be harmed by the way they use healthcare services what are the circumstances in which you take more precautions? What do those precautions look like? It might be that your approach could scale to protect more people who wish to exercise choice.

Picture by Mark Wilkie

Can healthcare providers be more supportive?

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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.

Motivation

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.

Ability

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.

E:Effort

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.

Trigger

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.

Summary

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.

How to make data more valuable

The 1st of July 2014 will be forever etched in my memory. On that date I woke up and peered across the bed to the window. Realising by the half light it was just past dawn I wondered why there was another body in the bed. It should have been at the gym. So I turned over and put my arm around her. I registered she was looking straight at me. She then uttered the words no man wants to hear who hasn’t planned for it. ‘Happy anniversary darling’. In the micro seconds it took my male brain to weigh up a response, her female intuition had already worked out my dilemma and laid the charge. ‘You’ve forgotten haven’t you?’  Guilty. I had forgotten. The rest of the day was spent demonstrating that 1. I loved her and 2. regretted forgetting our special (and easily remembered) date. It would have been so much easier to focus on one rather than both. A stitch in time and all that.

Later in the week I received what looked like a court summons with an official looking government stamp on the envelop. The letter inside read:

Dear (first name, last name),

Did you know that around 80 Australians die each week from bowel cancer? ..blah, blah , blah,…inviting people turning 50….blah, blah,.. faecal occult blood test kit with instructions…sent to you in the next few weeks…blah blah. If you are already being treated for bowel cancer contact….during business hours.

Yours sincerely,

Scanned signature

Chief Medical Officer.

Not ‘Happy birthday this is a big one mate!’ Not ‘We want you to stay healthy and happy’. No connection with me. Just a cold request to take a government funded test now that I have reached an age when my bowels are more likely to turn on me. Were they concerned about me or the statistics? This lack of connection may be part of the reason most people fail to participate in what is a life saving program.

Still later in the week my reception staff told me that a patient had left something for me in the staff room. Also being an Indian he anticipated my penchant for curries and had prepared a small feast as a thank you. Instant connection. I felt appreciated. I pulled out my pen and drafted him a note. The government invitation on the other hand, though it may save my life didn’t have the same impact. Sure I’ll take the test but only because I know it’s a good idea.

People who chose to share intimacies with us want to know that we really see them and that they matter. Medical practitioners and general practitioners in particular document all sorts of information about their patients; height, weight, gender, waist circumference, family history, alcohol and tobacco consumption, sexual orientation, menstrual history, temperature, blood pressure, pulse, heart sounds, medications, allergies, etc. How about their date of birth? Anniversaries of births, deaths and marriage? Why don’t we collect and use this information to make a connection? What I would have appreciated from my doctor in April this year was a hand written card that said something like:

Happy Birthday Moyez! Thank you for letting us be part of your life. We wish you health and happiness always. Don’t forget your wedding anniversary 01/07/2014! This year you can help keep yourself in good shape by taking the bowel cancer test, someone will write to you about that soon. To mark the very special occasion of your 50th birthday we have donated $20 to Medecins sans frontieres  Australia (http://www.msf.org.au/). Please stay in touch and call us if we can do anything to help you stay in good shape this year.

If a practice manager at an average Australian general practice searches their database for every 49 year old who visits the practice, I guess the list would contain a 100 souls at most. A 50th birthday card would cost the practice less than $25 including the donation. The goodwill that would generate would be priceless and make all of our lives better. As experts have noted:

GPs who initiate discussions about screening with underserved population segments in particular (e.g., those aged between 50 and 55, men, and people from a non-English speaking background) are in a unique position to decrease inequity in health outcomes and improve morbidity and mortality from bowel cancer. Carlene Wilson

 

Innovating for exemplar conditions

Colorectal Cancer (CRC) impacts on every part of the healthcare system. If a solution can be found to the challenges associated with CRC then they can probably be found for dealing with many other chronic and complex conditions.

  • CRC is one of the commonest malignancies in the developed world and often presents too late for curative treatment.
  • It may be related to a poor diet and is associated with obesity. The incidence is rising.
  • The vast majority of CRCs present with embarrassing symptoms.
  • Such symptoms are common and are also features of benign disease. People find it difficult to decide when they should see a doctor.
  • They often choose to consult other than a medical practitioner and there is evidence for procrastination and for inconsistent advice from the other healthcare providers.
  • [We need tools to assist those healthcare providers to signpost people to a doctor. Such tools need to fit seamlessly into their way of working]
  • The investigation of lower bowel symptoms are invasive and involve unpleasant intimate examinations.
  • Men are more likely to delay consulting a doctor than women.
  • [We need to understand why that is and what we might be able to do about it.]
  • Eventually anyone who develops CRC has to visit a doctor occasionally as an emergency. Symptoms may not correlate to the severity of the disease.
  • Those at highest risk of cancer are older people with lots of other problems.
  • They are all referred to a surgeon. Sometimes the diagnosis is delayed longer than it need be.
  • The treatment of CRC may include surgery, chemotherapy and or radiotherapy. Most people survive.
  • In a typical group of people treated for CRC a large proportion will develop long term side effects.
  • After treatment most patients will attend a specialist clinic briefly once a year, they will have unmet needs.
  • All patients will visit their GP/Family physician/Primary Care Practitioner more often than that mainly about their other problems.
  • We know the sorts of problems they present to their GP.
  • We also know that there are many problems or concerns that the patient does not voice to their GP and that treatment for CRC diminishes quality of life.
  • Primary Care Practitioners have the skills and resources to help people in these circumstances although they might need some additional guidance.
  • [We need a tool to help patients focus on these side effects and help them present this information to their GP.]
  • We need a tool that does not require fundamental reform of the healthcare system.

[A team of PhD students is working to fill in the blanks- their expertise will give us the capacity to focus on other such conditions]
In developing this program for innovation they worked with people who have been closely affected by this condition. They worked quickly, economically, creatively and in partnership with the healthcare practitioners involved in responding to the needs of patients and their families. Their work is beginning to be published.

Innovating in the too-hard box

Approximately one in a hundred people who consult a general practitioner is referred to a specialist. There isn’t an exact number because some GPs will refer more often, either because they have more patients who need referral or because they need the additional support themselves. Whatever the reasons the demand for specialist appointments is increasing; more people are diagnosed with cancer, dementia, diabetes and depression.  More people are surviving life limiting illnesses and joining long queues in outpatient clinics. At the same time there is enormous pressure to contain healthcare costs. So in the name of ‘safety, quality or efficiency’ healthcare providers are reigning in expensive healthcare interventions and access to specialists is on the list. That means there is a growing incentive to ‘prioritise’ those who are most likely to benefit from attending specialist clinics- those who are at highest risk of having a life threatening illness and especially those who are most likely to benefit from earlier treatment. There is pressure to ensure specialists are employed to serve new patients with serious illness and spending less time on matters that can be delegated to someone else.

In this context it is a feature of many healthcare systems that the specialist is requested to assist via a letter from his or her colleague in general practice. The GP is in fact the ‘gatekeeper’ to those services, this is especially true of those services that are subsidised or wholly funded by the tax payer. So what that letter says determines how quickly the patient will be seen because someone, often the specialist will schedule an appointment based on the contents of that letter. Of course it is still possible that a the doctor in the community might pick up the phone and call his specialist colleague if he was concerned that the patient needed urgent attention. Nobody really knows how often that happens. It is also possible that the patient may opt to see the specialist at a private clinic and, as would be the case in my country, be seen within a week.

In any case the ‘referral letter’ is an important element of the patient’s trajectory through the system and here are some inconvenient truths:

  • Doctors are not formally taught how to write referral letters and there is evidence that such letters can be improved.
  • The letter may be ‘triaged’ by a specialist, a nurse or a clerk.
  • Doctors don’t generally think there is anything wrong with their letters, or that their colleagues read those letters and everyone has a different idea about what they should contain.
  • We know specialist often say that GPs don’t write enough detail in their letters.
  • We also know that some people don’t think it’s worth spending time and effort focusing on referral letters because one day the process will be superceded by technology- it hasn’t happened yet and doesn’t look like it will happen soon.

Exploring, let alone improving referral letters is fraught with challenges:

  • GPs are not paid to do research and therefore are loath to spend precious consultation time recruiting and consenting patients for access to their records at a time when the patient might be facing bad news.
  • GPs are ambivalent about testing tools to improve their letter writing skills unless those tools are incorporated into their existing clinical software system.
  • Software developers won’t ‘waste’ time incorporating such innovations until they have proven value.
  • Doctors also argue that there is nothing wrong with their letters and that they record a lot of the relevant clinical details in their records. In fact, they don’t.
  • Specialists may be reticent to be involved in the research in case it sullies relationships.

Twelve years and several small or unfunded studies and some false starts later we are able to report on what we believe is the first randomised controlled trial examining the impact of GP referral letters on potential outcomes for patients. We were surprised by the results. The paper is in press and I look forward to sharing it with you soon. Suffice it to say that we still think it is an important issue, especially because most cancers are now diagnosed from people with symptoms who consult a generalist and because there are more, not less people in need of urgent specialist care. What’s more we have developed an innovation that just might work.

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?

The context is often private and confidential

7257592240_6759efd5a5_zThe consultation between a doctor and patient is private. Innovators hoping to improve outcomes in that context can’t observe the exchange directly because some presentations are very uncommon and because neither the doctor nor the patient welcomes the intrusion. There are many outcomes of the encounter between patient and doctor that we still don’t fully understand. Why are some patients’ cancer symptoms not recognised as early warnings? Why do carers of patients with a life-limiting illness fail to have their own medical problems addressed? Why do people living with some chronic conditions continue to have problems with intimacy?

People deploy verbal and non-verbal cues to communicate. They choose when and how to disclose their ideas, concerns and expectations. However in an average consultation in my country, the patient has fifteen minutes to ‘spit it out’. Similarly, clinicians vary in their ability to pick up cues or to probe with the right question, assuming they get the right answer. Hence errors of omission and or commission.

Lean medicine is about being intuitive, creative and agile. Lean innovators, clinicians, are already on site. Therefore, they can reproduce the context in a way that can be observed and where they can be tested with other clinicians. Video technology and a fusion of skills across disciplines allow the depiction of those encounters in such a way as to present the critical decision point for close examination. Do you prescribe, refer or investigate in these circumstances? What do you say to the patient?

How do you explore hard to reach elements in your practice or business? How can you hope to innovate for encounters that are strictly private and confidential but where mistakes or misunderstanding can be very bad for business. Who has the insight to show you? How can you generate valid hypotheses? How do you test ideas without a real risk of casualties?

Picture by Urbanbohemian