It’s not My Health Record, it’s Yours

Daniel Chen

I am a general practitioner and a long standing proponent of electronic health records but I am going to opt out of the Australian Government’s My Health Record (MyHR). This will, for the first time in history, create health records which are not under the custodianship of health professionals. This will be done without the person’s consent. I consider this be dangerous.

I may opt in when I can see advantage for me, and that will be when it really is MY Health record. I work in a context where many people use and benefit from the shared record. But they understand what is going on and have consented. It was a local thing. Now it is out of control. Literally, out of your hands.

Whose Health Record?

GPs have been keeping reasonably comprehensive individual health records for many years with letters to and from hospitals and specialists, pathology and radiology results, and progress notes – which are the GPs’ reports of the interaction with that person. General Practitioners, with your funding, have generated this resource.

Who sees the value?

As health care has got more complicated this comprehensive record has become more valuable. In view of this, and the fact that patients move and change their GPs, society has legislated that a person should be able to get a copy of their record and give it to their new GP. If that record is electronic (which is almost always the case these days) you would hope that they might be able to receive it over the internet and incorporate it into the new doctor’s software. It may seem unbelievable, but it usually comes on paper! Even when the same software is used by the practices at each end! If not paper then it will be “electronic paper” as a fax, a pdf or html. I received a ‘wodge’ of paper from a nearby GP’s dot matrix printer when I first went into practice nearly 40 years ago. It wouldn’t fit into my folder as the size was not standardised. Despite working to create an international standard health record format (openEHR) that could outlive systems and software, I still get paper and faxes. Never a record we can incorporate into our software.

Is it Accurate or Complete?

There is another change that has taken place: public concern about the accuracy of digital records – health or otherwise. Giving people access to their digital health records is a check and balance on the completeness and accuracy of these records and is helpful if people have concerns (and know how to access them). Patients in some parts of the world can look at their doctor’s records on line – and show them to others. It is rare that they can add to them, but there is increasing interest in co-production of health information between health professionals and the person themselves. This will allow entry of measurements such as blood sugar and blood pressure, logs of exercise and perhaps the fact that they have stopped or not taken prescribed medication or have started a treatment they did not get from a health professional. After all, only people themselves can know what medications they are taking or have stopped.

Ownership or Access?

Ownership of health records, particularly electronic health records, is ambiguous. The simplest axiom is to accept that it is the property of the person who is the subject of that record and the set of authors of that record. The subject of the record (or their guardian) can give access to whoever they want. It has not to this point been the government’s health record in any sense, but MyHR starts to blur that boundary.

In fact, MyHR supposes that the government is a better curator of your health record than your GP or some other provider who is attempting to meet your health interests. In the absence of standardisation, there is always pressure to centralise. Although this is attractive to bureaucrats it is fraught with many problems, most of which we have not yet faced.

Dangers of a Single National Database

Hacking

“If it is on the internet, you probably need to see it as public at some time in the future”, a speaker at a security conference said to me recently. The ex-foreign Minister, Julie Bishop, said the same thing on Tomorrow Tonight on the ABC last week. Wow, that goes against the grain. Why is MyHR a particular risk?

The larger and the more centralised a data repository, the higher the risk of security breaches. The ransom to unlock a hacked national database is likely to be many millions of dollars so it is very attractive. It is certainly true that a very high level of security is possible for such a monster database but governments will never have the resources that a company like Facebook has to spend on security; and yet 50 million Facebook records were recently hacked. That is twice as many as can possibly be in MyHR. There is an even more important risk to security in health care. Health care is now the biggest employer in most settings involving more than 1.5m people. Your relatives and personal adversaries are likely to work in health care or know someone who does. They are actually insiders – administrative and clinical people who have access. By contrast to MyHR, a GP practice has a very small database largely unknown to an outside agency and it is relatively secure as risks are local and more likely to be known.

Making Corrections

Once information is in the national database it will be inordinately more difficult to remove and correct it than when it is only stored locally. We are not known to the government agent on the end of the phone. Inevitably, and many (hundreds? of) times a day, health professionals will write in the wrong person’s record and save it to MyHR. This may sound neglectful, but it is difficult to prevent completely. Once that information is pushed up to the national health record it needs to be removed. The real problem is, it is not in your health record, and someone who doesn’t look at their health record might have the wrong information in theirs for years, or forever.

Problematic entries make it more difficult for people to navigate the health system without prejudice or inappropriate treatment. These problems are very easy to correct locally where the client and clinician are known but very difficult and time consuming when it is anonymous.

Curating Your Health Record

Currently, if you want a mortgage you will usually have to agree to the lender getting information from your GP. Some GPs fall for the lender’s request to forward the entire record; something they do not have the right to do without your explicit consent. I have not had one patient agree, when consulted, to send the entire record to the insurance company. A considered report of key information is what is required. It takes time and responsibility. But the situation may be considerably worse if you have a MyHR. You can understand in the light of this why the government has said earlier this year that it is inevitable that insurance companies will get access to MyHR in the future, as people want to get mortgages. Personal access control will not stop insurance companies legitimately requesting access before providing a loan. GPs currently vet the request and the health record, withholding sensitive and potentially confidential information that bears no relation to health risk in the future while providing information that allows assessment of risk pertinent to the insurer’s decision. This will include data such as cancer diagnoses, blood pressures, weights, smoking status, waist circumference and other measures that are associated with shorter life expectancy. In the case of MyHR, who will consider the interests of the patient?

Who Benefits from a Shared Health Record?

There is little evidence to date that a national health record repository will make any major difference to care although it has been particularly important in Aboriginal health in the Northern Territory. Having access to accurate information about people as they move about the health system is likely to be beneficial, particularly if you are mobile. But it has to be trusted and complete in relevant aspects to be useful. While many people who are mobile or have major illness will benefit from the sharing of health information, it is unlikely to make a major difference to standards of care in most instances as this information is already available from the client or in correspondence. Very up-to-date prescribing will probably have some utility at this scale.

So how can it be argued that consent is not required? I am very happy for people to opt in once they believe they will benefit and I am sure there are many people who will. The risk of privacy breaches, of inaccurate or incorrect information being recorded and the lack of curation will be balanced for some by their health providers having access to information at the point of care around the country.  But in general, the risks of publishing our health information demand our consent; it must not be assumed.

Further, government agencies will undoubtedly have access for what are deemed to be ‘honorable purposes’ by governments of the day.  Again, I think we should have to consent to specific secondary purposes, understand the need for completeness of information, and the potential benefits to us or others from the involvement in some way.

Is making participation in the national health record repository involuntary the best solution? The shift to “Opt out” means you get one if you take no action. That is not respecting a person as a citizen.

Why Would I Want To Opt Out?

Being involved as Citizens and not Consumers

We are now consumers and we consume healthcare at an alarming rate. Never mind the over-treatment, the over-diagnosis – the more we get the better. That works politically up to a point…happy consumers. But there are consequences to this consumption apart from the waste. If we have been prescribed antidepressants for a normal reaction to the loss of a loved one, or had an ECG for chest pain that shows some ambiguous changes, or have a high blood pressure reading because we are frightened and full of adrenaline, the content of our record damns us in the future. It does so unnecessarily, as we actually have no health problem, but in a way we cannot control.  Consider the possible consequences. Higher insurance premiums perhaps, more unnecessary tests because the next doctor is anxious or a persistent shadow of mental illness or suicide risk and difficulty getting travel insurance? The problem with our health information is that it is a threat to our autonomy. If people have certain information about us they can legitimately act on that basis, and defend it legally. To be citizens and partake in society as autonomous individuals we must guard our health information closely.

What Happens with Dr. Shonky, Stays with Dr Shonky.

When an incorrect record is created in a shonky ’emergency clinic’ it stays there. A record stating that we had ‘pneumonia requiring a major course of potent antibiotics for 14 days because it did not respond to the first course‘ rather than a more likely diagnosis in a fit person of ‘a viral lower respiratory infection‘ can have a major influence in future. But at least no one else knows.  The more mobile you are, the more you see different practitioners, the more you find free and easily available services , the more your MyHR will be promoted as ‘valuable’ and the more full of noise it will become. There is little or no value in this information, especially when compared to a comprehensive letter from a specialist general practitioner or physician, whom you know well, providing information relevant to the problem you want solved to another practitioner you are going to see.

Less educated people will be dealt the worst hand here and stories will slowly get to the press – wrong diagnoses, wrong treatment and occasional major harm.

The Special Case of Children

I am particularly concerned about children. Parents have persuaded government that they deserve the right to access to their children’s MyHR. This sounds reasonable. It is very rarely that children will benefit from having a shared record as they are usually robust, but I do accept that there are complex paediatric situations where parents are likely to opt in and they and their child will benefit.

However, in the new nightmare, children will ALL have a record. Now, in this dystopian future, consider the plight of the adolescent who is seeking contraception to prevent pregnancy. After the age of 14, adolescents will be able to turn off parental access to their health record. But will they even be aware of the existence of this thing? Will Dr Shonky understand the implications of adding certain information to MyHR?  Most troubling is that the adolescent will not be able to turn off access without parents being aware of this. How many Adverse Childhood Events are going to arise because of the MyHR? The world is not the middle class playing field that people working for government in Canberra experience. Some children will suffer.

Is there a Utopian Future?

I would like to offer some examples of health records that I think could meet our needs, and by using the word ‘our’ I mean citizens and clinicians.

For the young, IT savvy person who is most concerned about privacy, I would propose an individual health record on their phone and backed up onto the cloud maintained by a regulated cooperative agency. The health record would be composed of transactions with different health providers, potentially in different countries and even in different languages.  This does require standardised export from GP and hospital systems and a  means of access to a person’s health record but this is quite possible. There are technologies now available that can be used to validate such records, enabling the person to have a fully validated health record despite no one else having a complete copy of it.

The next level of control for citizens is where the health record is held by a number of providers in a range of settings. Some information is likely to be aggregated in one place by their provider of choice, but this service would be paid for and the person able to move some or all of the record to another provider. This model would involve EhrBanks, trusted aggregators and qualified custodians of health information. These agencies would hold some of the information and links to other records on other systems. These links can access and be able to pull down all the source records if required.

The EhrBank agencies would ideally be non-profit and allow individuals to consent to ‘secondary’ use of their health information for specific purposes. A representative group of clients could agree to use of data for research or other proven benefits.

In this future, I would see a national health record, but only for people moving long distances and not having providers that were grouped geographically or cooperatively. You might just have your allergies and your prescriptions on the national health record if that was of benefit.

Summary

I believe that Australians should opt out of MyHR if:

1) they believe that unknown people having access to their health information is more of a concern than health professionals not having access to it

2) their health record holds information that could damage them in the future

2) they are under 18 (involving parents opting out their children at birth)

For those who want to opt out, it might be time to consider an open platform that allows a range of solutions to meet people’s needs, while ensuring control. There are some budding examples.

Declaration of compound interests

I need to declare a number of interests. First, I am a GP and work for Central Australian Aboriginal Congress in Alice Springs, which has expressed the Board's and management's specific concerns via their umbrella organisations AMSANT and NACCHO. I have not sought in anyway to influence these and am writing this from an entirely personal perspective. Second, I am a director of the international openEHR Foundation which offers a collaborative technological specification as a solution in this domain. openEHR does not prescribe the actual implementation model, rather it specifies how to make this work in any number of ways. It is being used in the NT and also in a couple of PHNs around Australia. This technology supports and unlimited range of solutions while preserving the meaning of the health information. Third, I am a shareholder and director of Ocean Informatics which provides this openEHR based software. I have not been part of the national debate for some time as I have been disillusioned by the lack of progress. I did write the original scoping paper for the national electronic health record and have chaired and participated in various national and international standards efforts.

Killing the Micro-Biome

Moonrise

There is so much interest in the benefits of a diverse gut micro-biome. I take this to mean that evidence is starting to show that the diversity of the bacteria and other organisms growing in your bowel is a healthy thing. But we GPs are the enemy of the gut micro-biome. Plying our healing trade with copious antibiotics that are killing these important symbiotic allies. At least in the past the damage was limited. I want to talk about a what I see as a sinister test that really does harm.

Many people have bowel symptoms, almost always short lived, that relate to changes in their lives, their foods and drinks, their bowel organisms or exposures to other medicines. Many people worry about these symptoms and irritable bowel syndrome is an inclusive ‘diagnosis’ for people who are really troubled by their symptoms.

Symptomatic people have had tests of their faeces to see if there is anything going on. Perhaps you have felt pressure to order these tests, I certainly have. ‘Stool for Microscopy, Culture and Sensitivity’ was probably a common singular test and almost always returned no abnormality. Not good for anyone – the GP is unsure of why the symptoms exist, the patient has no answer and no sensible treatment and the pathology company only gets paid for one test.

Enter the multiple PCR for bowel ‘pathogens’. The nature of the PCR test is that it is highly sensitive, detecting a single organism rather than an overgrowth required for disease. It is now possible to test for the singular occurrence of one of 8 or 9 bowel ‘pathogens’ (alive or dead) in a person’s faeces with an average faecal bacterial concentration of 10^11/ml. These tests are usually specific to a genus (i.e. set of species) rather than an individual organism species. And some geni tested, for example Aeromonas, are ‘ubiquitous in water’ with very few of the species (3 of 14 in the case of Aeromonas) ever being pathogenic. Even if they are “acute diarrheal disease is self-limited, and only supportive care is indicated in affected patients” according to Wikipedia.

So in contrast to the old test, there is now the possibility of frequently finding bowel ‘pathogens’ which are usually harmless. A pathologist once told me that GPs like tests that have positive results in 20-30% of cases, allowing GPs to feel they are adding value.

Just to be clear, we have a common symptom (not usually caused by bowel pathogens), and a test that is likely to indicate the presence a very small number of (or even one) harmless organism. This test is in the hands of we GPs who like to help and ease symptoms, usually with antibiotics.

Patients are happy – a test says they have a disease and their doctor is treating it. Doctor has a label and the pathology company now has two tests to charge for. All for the good?

No, no, no. We are killing the gut micro-biome! And for nothing.

Let’s stand up for science and common sense and not order these tests. It took me nearly half an hour the other day to get an intelligent scientist who came to see me as a patient to understand what the issue was and why the antibiotics he took recently following a positive result (which appeared to help) possibly made him more likely to have problems again now. I eventually got the message across but it is challenging. So much easier just to repeat the parody of care and give him what he came for.

Please do not use this test.

To make you feel better, a gastroenterologist told me yesterday that naturopaths are doing more harm by using even more inappropriate tests. So we have a chance to look good in the future! We defenders of the gut micro-biome. It feels good to me.

Long view to Gillen from Undoolya

The Centre of it all: end of life

Alice Springs is named after the waterhole on the Todd River just north of the town which was the life source for those building and operating the telegraph station that connected Australia with the rest of the British empire. Kangaroos collect in the evening and dig for the water which hides below the surface of the sand. It was just one of many watery sources of life that cower in the massive ravines and gaps between the heads and tails of the caterpillar shaped mountains: Yeperenye dreaming. With the arrival of the cattle and the destruction of these waterholes, people have come to rely on bore water in these parts. Fracking is understandably very unpopular, while concern is growing that the heavy metals in some bores may be damaging kidneys.

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This underground water is not all good, but without it people can die walking around here in summer. One of my registrars had a near miss climbing Mount Gillen, a nearby peak in the Western McDonalds. He was evacuated to Adelaide for an angiogram. Another doctor from the hospital died doing the same seemingly trivial exercise in the extreme desert heat. You can feel that death lives near here; whether it is in a wild flower in a patch of parched sand, or a car in a terminal state creeping along the Stuart Highway bursting with shadowy passengers. Cars often don’t make it to any normal grave and their bodies are everywhere.

Central Australia strikes me as the Centre of Palliative Care for Holden Commodores, our national iconic automobile. They come here in various but often rather morbid states and they are driven until they have nothing more to give. They usually die at home, rather than on the highway, but there are still many deaths by the road. There is, fortunately, a roaring organ donor program which operates once a senior mechanic considers that there is no useful life left in the beast. Dismantling then occurs, usually passed to friends and family members who have Commodores with some life left in them and can benefit from the transplant. Initially wheels and lights will be respectfully removed leaving the car at rest. Eventually larger organs will be required and the car turned over to remove suspension and other replaceable parts.

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Organ donation does result in a genetically mixed and rather mosaic breed of Commodore. These may have one trip left in them, requiring simply that the cost of the transplant and fuel is less than any other form of transport to get where people have to go. I remember, years ago, at Mosquito Bore 300kms or so to the north east of Alice, being stunned by the massive din and cloud of dust heading towards the little outstation and collection of humpies that housed some of Australia’s premier artists at the time. As the apparition materialised, it turned into a red dust-coated white Commodore with no windows and no tyres, running on flattened metal rims. The only gleaming evidence of success was six sets of very white teeth between dusty lips that appeared from the low slung vehicle in the dimming light, all chuffed to have made it. The vehicle died right there, exhaling steam and smoke.

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For some people in Alice Springs, the value of Commodores is quite different. They are symbols of Australian engineering and are to be shined and cherished and made to live until well after their life expectancy. They creep around the town and mostly slink into garages and get covered from the damaging sun. They live a lot longer but their lives are distinctly mundane and rather vain. Seeing other Commodores hurtling towards an early death, roaring over miles of corrugations and breathing thick red dust, brings tears to their eyes. They fantasise about eternal life and their descendants taking care of the beautiful automobile.

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Culture has a lot to say about how we live and die. A short exciting life is of interest to many and some will invest in freezing their bodies in the hope of living forever. Mainstream urbane society is grappling with their own need to control the moment they die; all the more understandable in the face of the grotesque ability of medicine to keep us alive. For those members of our population who do not expect or wish to live forever, for whom the pace of life includes the march to death and for whom it all passes rather more quickly than we would want, the call for voluntary assisted dying does seem somewhat out of place, or even repugnant. Further, as a member of a society that has killed Aboriginal people in large numbers, and as a doctor seeking an easy death for a suffering patient, I can easily be seen as propagating this history. There are also major risks for family members openly suggesting that it is time for a loved one to die. Blame is standing, waiting with death. It gets more even more complicated. The four doctors at Congress who work in aged care (who are considering carefully our role in other people’s deaths), the palliative care specialist from the hospital and the compassion filled social worker who has worked in the field for many years are from six different cultures. None of them Aboriginal. If we combine this with the workers in the new Palliative care hospice and the nursing homes, you can multiply that many times. But zero times anything is still zero. There is an extraordinary mismatch of cultures, views, love, delight, sorrow, empathy and compassion. But almost all our clients are Aboriginal. It is unfathomable for everyone.

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The Commodores provide some evidence of different attitudes and approaches to mechanical death and the value of a iconic vehicle to all sectors of the community. I have heard that the Commodore takes to the dirt roads better than other cars, that it uses less fuel than the Troopie and that parts are easy to get. I asked a wily hitchhiker coming back from the Santa Teresa Sports Festival on the weekend why Commodores were so sought after in the bush. He initially paid homage to the ubiquitous Toyota 4 wheel drive, but the answer was relatively simple. “That Commodore’s got more pipes”.

Bum Steer: to be human is to be limited?

origami_rose from Mumtastic

I have always been amazed by the different approaches people take to what appear to be very similar issues. Is this the expression of boundless human initiative? Or could this just be positive spin, a conspired plot by our leaders, teachers and gurus to help us feel empowered? I am inclined to think so and now wonder if we actually choose from a very finite set of responses, basking in a delusional sense of freedom. So, to be fair to everyone, should we perhaps bemoan the limited opportunities we have and share our pain? Let me tell you how I happened on this analysis of life.

In a slightly intoxicated state, at a large family gathering, in the warmth of a southern European late evening sunset, with dear friends from various generations (relaxed I guess), I chanced upon the realisation that people used toilet paper in different ways to achieve ‘anal cleansing’, a topic that appears to remain controversial. And to my continuing amazement, not many used it the way I do. If you are from a culture that uses this tool (we have to have a range of tools ready these days) then you might be as surprised as I was at the time.

At the beginning of this convivial discussion it appeared that humans had developed a wide range of techniques to achieve this same sparkling outcome. However, as the general enthusiasm for the discussion grew and more spoke of the intricacies of their own technique (including input from a few recent users returning to the group) we discovered that in this large group there were only three methods employed. These were as follows:

  1. Folders – usually along the perforations when available and using 2-4 sheets;
  2. Wrappers – wrapping the toilet paper around the flat hand; and
  3. Scrunchers – just randomly building a ‘bouquet’  of paper to do the job (crumple is an alternative label but does not quite capture the engineering).

I was delighted to have led this small scientific inquiry and to have managed to set up an all encompassing classification system on the spot. Further, it illustrated the magic of three. I have yet to find any alternatives in the literature despite considerable epidemiological data being available. What does all this mean?

By now you have probably realised that I am a folder. I seek some order in things and am a committed utilitarian. I firmly believe that folding is the most efficient and environmentally friendly technique and so it appeals to my moral character – or at least I can work on that. I have good friends who are wrappers and I even know a few scrunchers. We all get on regardless, on the whole. I am also prepared to proceed in life blindly respecting others privacy and can say quite honestly that I do not know what most of my friends and acquaintances do. I like to think it would not greatly alter my opinion of them. To be honest, I do sometimes wonder about the prime minister and leader of the opposition but am not overly troubled by these musings.

Which brings me to the metaphysical relevance. I suspect that much of the time we act or think in a way that feels like the embodiment of freedom. Consider the case in point. No one told me what to do with toilet paper and my solution worked fine. I did not realise there were alternatives, and when I found out, I did not realise that there might be a limited number. This was terribly enlightening. Are we all behaving similarly, within a very limited range,  in most aspects of our lives? Are humans patterned  in a profound manner, developing their uniqueness from the range of exposures rather than the range of responses? I suspect so. It hurts a little to think of it and I have contemplated briefly what this means for humanity in general. How can this enlightenment help? I can only rummage through my own experience and musings at the café yesterday morning.

Like all humans I don’t feel good at times. But I choose, on the whole, to blame the ache in my stomach or chest when I lie awake at night or other fleeting symptoms not associated with acute illness on what is going on in my life. This usually involves the ones I love or work with or recent past or upcoming events. I realise from my general practice that this is not what everyone does. Others look in directions such as deficiencies of vital substances, the food they eat, their genetic makeup, the exposures to toxic substances or the drugs and medicines they use or have been given.

I must declare, as a rural boy of the 1950s, that I have my own potential causes of symptoms which are recalled apparently without effort but which I choose to ignore. I will confess that I grew up in an asbestos house with a father who smoked until I was 10. I also sprayed the carcinogen DDT into the air I was breathing on a grand scale across the countryside, earning pocket money from farmers who were friends of my parents and perhaps had an inkling that there was some risk. (By the way, no one has apologised to me for the possible harm done). I have, to the suffering of my friends, been emotionally buoyed by and a proselytiser for the research into the extension of the lifespan of earthworms suggesting ongoing exposure to low level toxicity is a powerful enabler. Caffeine has since officially joined the likes of low level radiation, starvation and dehydration.

The advantage of looking at what is going on in your life rather than other sources of ‘illness’ is that there is likely to be an answer there. If there isn’t, I have usually found it fairly simple as a GP to find out what is wrong. However, when not accepting symptoms as generally harmless expressions of a person’s existence, it poses a massive diagnostic dilemma which is potentially never ending. The bedevilling of food as toxic agent is a current example, causing distress and pain from birth to old age.

By not blaming food for my symptoms, I and my relatively large and extended family all have the joy of eating everything presented to us without concern, just as my 92 year old father does between playing golf and avoiding doctors. I think, perhaps naively, that I still get the same symptoms as others – it hurts after I exercise, my head aches regularly, my stomach regurgitates and grumbles, my bowels complain randomly, my haemorrhoids are troublesome at times. I don’t look for biological answers unless I am really affected, which is fortunately extremely rarely.

In my work as a GP I see hoards of patients searching for answers to their subtle symptoms and dysphorias before they are ‘really affected’. It seems so complex but how many places do people actually look? Could we classify them usefully and gain understanding? I want to be clear that in my wildest dreams I am not suggesting that their individual responses would correlate with how they use toilet paper, but I do wonder if we are as diverse in our responses as we might think. This all came to a head yesterday when out for breakfast. The extensive and diverse menu was carefully classified as ‘gfo’, ‘gf’, ‘vo’, ‘v’, ‘df’ and ‘dfo’, carefully understated in lower-case. I guess that catered for most concerned customers – and if we take out the ‘o for option’ that leaves ‘gluten free’, ‘vegan’ and ‘dairy free’ – the magic number of 3. To be human is to be limited.

 

Registration status on view

I have been advocating in the Northern Territory for changes in the way doctors present themselves to patients. I want to see transparency of a doctor’s registration status so that patients are aware of who is working under supervision and the name of that doctor’s supervisor. That way patients can escalate any issues to a supervisor if they are not satisfied with the care they are being offered.

Currently in Australia patients have to go to the AHPRA website and look up their doctor. Also, the doctor’s supervisor is not named on that site. How are patients to know who they are dealing with?

I propose the use of 3 colours – red, orange and green – to represent registration status based on supervision requirements. These would have the following meaning:

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Doctors accepted into a formal training program would be recognised by a mixture of yellow and green.

Badges might look like this in hospitals:

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And like this in primary care:

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In general practice the colours could be on the name tag on the door rather than on a badge. The point is that patients could understand where we all fit into the world of medicine, whether in hospital or primary care.

Let’s make it clear for patients. The current universal response by doctors to this challenge is that patients have “no idea about the registration status of doctors”. Well, who is to blame for that? I am certain that they want to know.

 

 

Time Share

Time traveller
Time is the basis of human experience, it is the foundation of narrative, the vehicle of observation and the thread of trust. Its linear and physical path draws our attention away from the cyclical daily routine we inevitably follow at times. Understanding the importance of the future is health itself. Building and discovering a past that nourishes us is what provides our peace, contentment and a framework for generosity. As a healing profession, we must work with time, give our time and help people regain or maintain their desire for health and well-being.
Many people we see as general practitioners need our time more than our tests or our treatments. Just spending time with someone on a few occasions can have a significant impact on their lives. This is not well understood but does depend on our care and reputation. We do know that science has not been able to determine which components of many effective ‘talking therapies’ (such as cognitive behavioural therapy) actually make a difference over and above the engagement of a significant person with shared goals for a period of time. Spending time in conversation with someone in difficulty is inherently worthwhile. It must involve listening, should involve challenging the key determinants of the person’s situation and may involve sharing some insights gained elsewhere. Doing so builds two narratives; the narrative of the person’s life and their difficulties as well as the narrative of the time shared with us. Insights inevitably arise and as a consequence a changed view of the past and future. These narratives, now shared, allow trust to grow with a mutual understanding, and can be drawn on in the future when further difficulties intervene.

This approach also has a role in acute care. If we think of ‘monitoring’ a person’s condition as limited to taking measurements and making observations, it reduces our impact to the singular (and sometimes very important) biological dimension. However, we can also use time when someone is acutely ill in much the same way as when the person is distressed, building trust and a shared narrative. That way we can work with the ill person not only to make sure they are safe, but also to learn how we should work together effectively in the future. Such an approach allows a mother to take her sick child home for a short period (perhaps 4 hours or overnight) and return to discuss any changes, what social support they have been able to muster and how they are both coping. What we learn together can be used to ensure a good outcome and also to determine appropriate care when similar situations arise in the future. This provides a much greater gain than a prolonged trip to the emergency department to be tested and scanned unless, of course, there are signs of major illness.  The shared narrative is valuable to all concerned regardless of the next decision.

And what of protracted physical symptoms such as back pain or headaches. Although tests seem most likely to provide benefit, it is rare that they do. We know, for instance, that most changes seen on CT or MRI scans of backs do not correlate with symptoms. But doctors tend to make these spurious correlations, leading to ongoing concern and even an unwarranted deterioration in perceived health. Using time, as part of a naturalistic approach, is far more helpful, leading to observation, trust and a shared narrative. If the person will not take time to get stronger and more active or take time out to relax and nourish themselves or other simple measures to address the problem, then this can be challenged, but only from a position of trust. Arthroscopies may damage knees (especially in the elderly) while time often heals them. It takes a practitioner’s time to gain the trust of a person that allows them to give their bodies time to recover.

No one is time poor, for we all have the same day-to-day allocation. Horizons shrink with age and illness but time marches constantly. Even when our patients die, the once shared narrative remains as illustration or, in its public form, to share with relatives and friends and provide a new basis for trust. Time has one demand. We must be realistic. As Camus said, “Live life resolutely without hope for there is no consolation.” This is not a call to hopelessness but a call to being realistic and it is a very helpful stake in the ground for people who have a grave diagnosis and much uncertainty.

A growing personal narrative, more valuable if shared, is at the heart of our humanity. When thin or missing it is a mortal wound. People create this story with parents and kin, often regigging and changing the colour of bits and pieces. It becomes who we are, the gaps , the inconsistencies.  It is far harder to fill gaps retrospectively when they emerge later in life. The stolen generation and secretly adopted children testify to this. The value of memory with anchoring narratives is probably paramount to a happy life, no matter the distress that may have been part of the experiences that generated it. Working with our patients to put together the narrative of their lives, despite their focus on the woes of the present, is a wonderful experience and can make a difference for generations.

Why bother?

Hong Kong Hang OutIt is easy to get the feeling that we could all do a good job in general practice if it wasn’t for the crazies, the difficult ones, the slower types and the worried well. It is a bit like John Cleese in Fawlty Towers – who made the same mistake.

Today I saw a woman that I met a decade ago. She looked dreadful, much as she had done then. At that time she had been banned from our local emergency department. Now she is unable to get care from the psychiatrists. A decade ago she was complaining of pain and was relentless in trying to get medication and something done. In fact she had an abscess in her neck, no doubt due in some part to her lifestyle. She was sent away to a tertiary center and put through the mill. Spinal surgery, intensive care, rehabilitation.

She recovered in terms of her abscess but remains as out of control now as she was when all this started. Today, 10 years later, she is again begging me not to see her as a drug seeker, a doctor shopper, a write off. It was difficult not to do so all that time ago despite her neurological signs, just as it is now.

I have never prescribed her painkillers or benzodiazepines despite massive protestation: the sort that makes you bleed. It is heart felt, theatrical and even a little endearing before it becomes somewhat intimidating, quickly tedious for those measuring their own responses in terms of best practice or guidelines. There is absolutely no vaguely visible road to success. It is so compelling only because she genuinely suffers so much; wailing, pleading as tissues amass in or near the bin.

She sees her future only in terms of medications provided by doctors; me and my colleagues only in terms of degrees of rejection. She is “The Hulk” of medication users – she even looks a little green. There is no end of medical and social labels that apply, made all the more compelling due to her lack of insight. She is stark naked in her intoxicated disguises.

How to help? Her life is always on a thread. Efforts to help from a myriad of agencies lead nowhere noticeable. The pain is felt by all.

I shook her hand today and we parted peacefully enough. She might take me up on my offer to help her be a little healthier without feeding her hunger for intoxication. Some I have known like her have died younger, some have stumbled into middle age where they sparkle like drunk adolescents in a bowls club. I really wonder at her will to live and be fed. I feel for her family.

Do I have room for hope?

Je suis feminist

Southern Beach Gender is a big topic in medicine at the moment. Since Elizabeth Blackwell (US) graduated in 1849 and Elizabeth Garret Anderson (UK) gained recognition as a Medical Practitioner in 1865, women have been making headway in taking their rightful place in our ‘honourable’ profession. Constance Stone, Australia’s first woman in medicine, graduated in the US in 1888 as the University of Melbourne did not admit women. With hindsight, it appears immensely unfair that women could not study medicine and at what cost to humanity? It has been tough on those leading from the front in what is indisputable social progress. This progress does carry with it implications for our profession and for interactions with our patients and peers.

As our profession becomes more gender-balanced, the status of medicine becomes more dependent on the general status of women in society. Some will know of what happened to the standard and resourcing of the medical profession in eastern block countries when a majority of female practitioners were trained and employed without the status of women changing in those societies. Thus, if we are to be a gender-balanced profession and maintain the status of the profession then we all have an interest in the status of women. Self interest for all!

The majority of patients presenting to general practitioners are female and having access to a greater number of female doctors is positive for those who seek this. Research shows this correlates with the more ‘patient-centered’ approach of female doctors; but as men and women have the same medical training I suspect this is a social skill of women rather than a professional attribute. At the start of my career approximately 40% of women preferred female doctors for PAP tests, 15% preferred men and the rest had no preference. I could find very little data in Pubmed on current preferences but in a recent paper on gender preferences of men with erectile dysfunction it was approximately the inverse. Clearly this varies with cultural influences; importantly the lack of access to a doctor of the preferred gender may lead to reduced uptake of a required service, particularly in non-acute care. This may extend to colonoscopy.

I am aware that modern society is more sexualised and this almost certainly has an impact on gender preference in the consultation. At a Taylor Mac performance I recently attended he described his gender as ‘none’ and his sexual preference as ‘audience member’! Should we ask patients not only their preferred provider gender but also their preferred sexual preference? Would this change things for patients? A heterosexual male patient, whom I have counselled through a distressing period in his life, told me that he would prefer to see another doctor for his check up as he liked me! Presumably this was due to the possibility of an intimate examination. Very young girls with asthma are quite often reluctant to show me their chest when I am examining them. Sexualisation of life further promotes gender alignment in the consultation out of a feeling of safety.

An unintended result of increasing gender alignment is the deskilling of general practitioners in gender-specific medicine. I would propose that this is already a significant problem, added to by an increasing number of doctors working in primary care who are uncomfortable with cross-gender medicine for cultural reasons. Some avoid this aspect of practice altogether. In large cities this is not such an issue but in rural practice it can be catastrophic. The wonderful female doctor visiting program is a patch for this but is not a long term solution as it is very expensive and does not address men’s needs. All doctors need to understand gender and be in touch with those aspects of gendered behaviour that make others feel either comfortable or uncomfortable. General practitioners must take care of humanity, leaving gender preference to their patients.

What are the consequences within the profession itself of becoming gender-balanced? Clearly there are more opportunities for cross-gender interactions with peers; some of these will become sexual. One visible result is the larger number of dual-doctor families rather than the common doctor-nurse couplings of previous generations.  Let’s not get too hung up on people making sexual approaches within the profession even if these are a little foolish or fumbled. When the approach is sexual harassment then there are well established legal pathways. But any association of such liaison with job progression is completely unacceptable – whether through negative threats (“you won’t progress if you don’t”) or positive inducements (“I could do a lot for your career”). Calling this out for what it is should bring the spotlight on the unwanted attention rather than the individual in receipt. Managers must address this, and if the person providing the unwanted attention is the manager, then there must be a third party involved.

Our professional colleges could be a means for this to be dealt with when there is no other mechanism or the system is failing.

We must also consider the possible inappropriate calling of harassment. I am a non-gendered shoulder-touching and kissing sort of person and not everyone finds that acceptable (male and female); but it is my culture and I have got better at recognising when it is not accepted by others. I have never made any sexual advance to anyone at work in my career but I have had one doctor feel uncomfortable with my approach to physical contact. How far can we be expected to change for individuals? It is a general question worth asking. Recognising others’ cultures is important but being genuine and relaxed is also a positive attribute. How far does a widely acceptable non-sexist culture have to take into account another’s culture in these matters? The answer is probably “to reasonable lengths”.

So let’s all be reasonable in most matters but intolerant of any indications that women are being treated in a way that is unfair. This is all about fairness and humanity.

The doctor’s concern is the patient’s fear

River Bed
Katherine River
How often have you listened to a patient’s story and thought, “OMG! This person has a brain tumour.” After a few more minutes listening (if you are into that sort of thing) your concern might have developed into a mere brain abscess or perhaps a cerebral vascular abnormality. Reacting directly to such gut responses is one reason that doctors now do so many CT Scans of peoples’ brains. I am ashamed to admit that we now cause more brain tumours than we detect. That is clearly not good for our patients and the public purse. In fact, it is a disgrace.

So what should we do with this concern that patients so easily generate in our viscera? We ignore it at our peril for we do not know if it is based on reality, searching google and incorporating the symptoms, a grief reaction to the death of a loved one or even just chance. Whatever turns out to be the case, if the patient was not fearful before telling us their story, they will be after they witness our response. 

What I am saying is – the doctor’s concern and the patient’s fear is the same thing. Singular. One. 

 There is a solution. To respond as a professional rather than as a social being. The neighbour, friend or chat room acquaintance will stay with the patient’s fear – “You need a CT Scan my friend”. As a doctor you can feel and acknowledge the concern, either internally or openly with the patient, and recognising that it is probable that the patient is afraid of whatever you have become concerned about. Now park that concern and go about your professional business.  You can continue gently with the history gathering information that might confirm or refute the possible calamity and examine the person carefully. I cannot stress enough the need to examine people carefully if you are going to refute their fear and explain the symptoms another way. The laying on of hands shows care and attention to detail and justifies our professional opinion.

There is still work to do but investigation is not usually helpful if you do not think it will change the management. Investigation may mean an easy life for you and the patient might attend less in the short term. But the patient has proven that they were right to be afraid and shown that the doctor needed to do a test in order to discover that the feared condition was not present. What is that patient to do when the symptom recurs? How long is a reasonable gap before the test is required again as the doctor is unable to allay the fear without the result? It is a bit like the acceptable period before a widow or widower takes a new partner: there is a wide variety of opinion and a lot of gossip.

 Once in a while, the fear may be so out of touch with reality that it is best to refute this in theory and avoid getting dragged into a clinical black hole. I met a patient who was repeatedly terrified that she had melanoma and would only trust a biopsy result; the doctors were concerned. When I refused to do this on the grounds that she had no added risk and normal skin, she became a very frequent attender for a skin check. It was only when we began to focus on the rest of her life that this fear resolved. 

So use your fear barometer, your concern dial, but be aware who is pushing it.

I’ve had my first complaint

DSC00763Yesterday I received the first complaint of my 35 year career through the Health Services Comp
laints Commission. It was submitted on behalf of a patient by my local MP’s office. I spent a few hours yesterday coming to terms with it and again today responding. It has made me realise that we have a problem. I have written to my local MP requesting the chance to spend some time with him to explain the implications of formal complaints through the HSCC after determination of my complaint. I am experienced enough to take this on the chin, but a less experienced doctor will undoubtedly find such a process daunting and is likely to see the community as hostile.

There is no doubt that there is a very great need for a clear and powerful pathway to complain as a citizen about the health care we receive. It is also fundamentally important that this process is geared to deal with complaints at different levels. If the person has been harmed or suffered in a major way, it is important that this goes to APHRA and into a legal process where appropriate. If the person has been harmed in a temporary way, caused to suffer unnecessarily or does not feel that they received adequate care or information, this should lead to a local and careful process. Any claim of offense should be taken very seriously.

However, if the person has been inconvenienced or communication has been poor but has had reasonable care, or the complaint is vexatious, then the professional should not be required to respond in a lengthy manner and should not suffer unduly. If this happens frequently the community will receive more and more defensive care of dubious value. There are already many GPs who largely do what patients request for fear of complaint. Interestingly, a US study has shown that doctors who have very high levels of patient satisfaction have poor outcomes, even in terms of mortality. Patients don’t always know best.

We also need to acknowledge that there are the normal checks and balances that operate in terms of patient experience were no harm results. Patients are free in Australia to seek health care elsewhere or complain to the provider, even publicise the problem (now common on social media). I believe this should be the accepted pathway when no harm has been caused. Accredited general practices have to demonstrate that they act reasonably in such situations and keep a register of complaints.

Such unsatisfactory experiences are universal in all service settings including healthcare settings and some providers and some patients find it difficult at times to understand the situation of the other person. Regulation and heavy handed approaches will not solve this very human situation.

How can we ensure that these increasingly common formal complaint processes do not cause more harm than good? First, a professional who has received a complaint should be able to discuss the complaint with a qualified professional within the complaints environment. This could resolve situations where there are clearly no grounds for complaint and where a conciliatory process is inappropriate. While this might appear to be more costly it would forego the costs to many professionals of the hours spent dealing with a complaint, the demoralising effect of receiving notice from a statutory body and the loss of face with colleagues.

 Second, there needs to be some formal redress for vexatious complaints or minor complaints that have used this heavy handed approach to be heard rather than seeking conciliation through the provider. This requires responsibility of those managing the process to ensure maximum general good and not just meeting the complainant’s wishes. It also requires an apology from the statutory body to professionals when processed complaints are found to be inappropriate or vexatious. Again, while there is no professional input within the complaints environment prior to passing the complaint to the professional this is likely to be frequent.

I fear formal complaints will become all the rage, encouraged by social media and politicians standing up for a fair go. At present the professional has to respond according to legislation – no doubt for our own good. Don’t mistake me, I do believe conciliation is the best approach and practice this avidly in our setting. However, at times it is not helpful to seek conciliation and it is most appropriate to separate and for the patient to seek health care elsewhere. I think a practitioner should have the right to ignore the complaint with the understanding that legal approaches may costly and perhaps not covered by medical defense insurance. Sometimes we know there is absolutely no cause for complaint and absolutely no chance that reconciliation will change anything. What should we do?