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Age, occupation and prognosis may filter what the patient hears

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I’m booked in for a check up tomorrow with the doctor who looked after me and called the ambulance so I can thank her in person. My bike doesn’t seem to have a scratch! Tony and Wayne

The experience of an illness, accident or emergency can heighten the trust in a medical practitioner. Primary prevention is more problematic.  People who are asymptomatic and being urged to alter their lifestyle or take antihypertensives may be more dubious:

Well I mean would you trust them with your life? Or would you trust them you know, when you’ve got a bit of a cough? You know, there’s a bit of a difference. You can trust somebody to take a splinter out or whatever but ah, I mean, even if you’ve made some sensible comments, if you’re going to start playing around with anything serious, you know, brain or the heart or whatever, you’d like to know a bit more about it—you’d like to see him in action and…Meyer et al

Three factors appear to influence the attitude; age, socioeconomic status (SES) and prognosis. Our research was conducted with reference to cardiovascular disease. Generalisations in medicine are not safe however these data offered some helpful pointers.

Older patients, lower SES patients and patients with established pathology are more likely to trust, and are less likely to question medical advice. Meyer et al

Our research also suggests that:

Participants who perceived themselves at risk of a poor or uncertain outcome were unlikely to express doubts about medical advice. Meyer et al

Therefore, context is critical when crafting an approach to the patient. Does the patient wish to be involved in decision making or would your presentation of multiple options with the relevant probabilities for each outcome make a bad situation worse? At a time when there is a push towards ‘patient self-management,’ the data suggests that some patients prefer a traditional approach with the doctor recommending a treatment modality. Older people in deprived areas top the list, the demographic that is at highest risk of chronic and complex health conditions. Unfortunately getting this wrong when the patient wants to be more involved may destroy the relationship between patient and clinician.

…he’s always explained—look whatever I’ve gone to see him for he’s explained, he’s gone into details. He, he doesn’t write anything off without doing tests for, for further examinations—whatever. And through the process of elimination as opposed to my previous GP who had the approach of, ‘ah it’s nothing—you’ll be alright’. Meyer et al

We need to understand the business of doctoring as an integral part of designing solutions aiming to optimise patient experience. We need doctors to step up as codesigners. Treatment is often determined locally within the appropriate context rather than a one-size-fits-all. The solution to healthcare challenges starts with having a good General Practitioner whose work is supported by good research in primary care.

Picture by Tony and Wayne

Some experiences recalibrate the patient’s response to health practitioner support

6025359063_81a0b67b4c_zIn a review of the impact of breast cancer on women’s lives we reported one woman’s perspective on her relationship with her partner as reported to her Specialist Breast Cancer Nurse:

He’s slowly letting go. And we had a wee talk yesterday actually because [Name]’s very boy like. Never wanted children, never wanted commitment that’s why it’s, I’m more of a mother than anything to him and he spends a lot of time playing games on the video and doesn’t really do a lot around the house and I just said to yesterday, I said this is quite frustrating for me because with what I’ve been through I want to live life and sitting around here having somebody play video games is just not really doing it for me. Jiwa et al

The experience of breast cancer had altered her view on something she had taken for granted. Pre-cancer was very different to post-cancer. A subsequent paper concluded that:

In the absence of cancer specialists, in years 3, 4 and 5 following diagnosis, Australian women would prefer to have their routine breast cancer follow-up provided by a Breast Physician (or a Breast Cancer Nurse) in a dedicated local breast cancer clinic, rather than with their local General Practitioner. Bessen et al

What patient experience drives this preference when nationally experts in cancer care have been actively promoting shared care between GPs and specialists?

We speculated that it is the relationship with the  Breast Cancer Nurse (BCN) from diagnosis through treatment and beyond. At this time in most cases, the GP is hardly involved at all. Our data suggested that if the approach to patients in the period following active treatment was limited to discussing physical symptoms and possible side effects of adjuvant therapies then there will be a lost opportunity to help patients to adjust to the experience of breast cancer. From our data one can only speculate whether this would lead to psychological, social or physical problems or whether patients would find other sources of help. However, the importance of the BCN who has the experience and resources to support the woman throughout the process of readjustment but can also recognise the significance of clinical changes in breast tissue is a critical element of any follow-up protocol. That does not mean to say it can’t be her GP, but the conclusion of research with patients is that often it is not.

Overall, BCNs play an important role in facilitating the transition of patients by supporting the woman in adjustment to a new self-image and bodily functioning. The BCN accompanies each woman through this phase in her life while supporting a new narrative, promoting her ‘rebirth’ as someone with views that have altered significantly after the diagnosis of cancer.

Breast cancer along with many other conditions where the patient is subject to treatment to combat a potentially life-limiting pathology changes the patient’s perspective forever. In crafting support for such patients, it may be crucial to consider what the patient has experienced and with whom and not what would suit health care providers to offer in the way of support. The follow up regimen has to be tailored to the context. That word context again!

Picture by Liz West

Why the common cold must be seen in context

imageI was there to buy sunscreen. The pharmacy assistant served the next customer.

I’d like something for a cold. Something to stop the runny nose and help me sleep at night.

Upper respiratory tract infections are the commonest reason that patients consult doctors in primary care. What can doctors do about these infections? In the vast majority of cases nothing. And still they come in there hundreds of thousands. Will you go to work the next time you catch a cold?

If not why not?

Surely regular paracetamol is about all you can take and it’ll get better ‘in a few days’. That’s what the chemist told her customer and I nodded in agreement.  But perhaps we are missing the point. For many people the runny nose and aching limbs is more than they can cope with on top of boredom, anxiety and that hour long commute on a crowded bus to work at a job that only just pays the bills. What with the sleepless night, the wheezy toddler, the noisy neighbours, the hang over and the barking dog.

In the case of sickness absence an employer may demand a ‘doctor’s note’.  This infection more than any other medical condition teaches us that context is everything in medicine. For the medical practitioner it’s not a case of treating an infection, it’s about seeing the patient within the backdrop of their lives. The common cold offers an uncommon opportunity to connect with people when they are expressing something that they may scarcely be able to articulate in words. Something that impacts on their experience of all discomfort and disappointment they may experience.

When we frame the epidemiology of respiratory tract infections as a microbial assault it’s like attempting to navigate a route with reference only to ‘Google Earth‘. The impact on human behaviour is only discernable in finer detail. Perhaps people consult doctors in these circumstances when there are many other things that are wrong in their lives. The medical response to upper respiratory tract infections can best be crafted with reference to Patient Experience Design. The patient requires more than platitudes about a ‘viral’ illness that doesn’t respond to antibiotics.  The time out may offer an opportunity to reflect on more fundamental problems. The best response in medicine may be to acknowledge the ‘troublesome’ symptoms and accept the reasons for consulting without harming the patient with unnecessary drugs. To do this well and to promote a more resilient attitude to discomfort requires an understanding of what people need when they are suffering but not moribund. Those with upper respiratory tract infections who seek help are not malingerers because more than a virus causes their morbidity. As well as an opportunity to stimulate reflection on what ails them more generally it is a teachable moment to instruct on self care.

Picture by William Brawley

 

The essence of Patient Experience Design

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The Journal of Health Design has been launched to serve innovators who are inspired by unsatisfactory patient experiences. Stories that suggest that by working with people and focusing on their needs as well as their wants we can develop much more effective healthcare solutions. Stories such as those described below.

I saw him many times over the years. He was Indian and he had diabetes. His blood results were seldom within target and he was obese. He had heard why this condition might impact on his future. We spent many weeks and months getting to know one another. I consulted other members of his family. I saw him through several life events including his spiritual rebirth. Finally his blood sugars come within target and his weight drop to within the ‘normal’ range. All this was achieved through his own efforts.

Diabetes impacts on people in very different ways. The prognosis depends on how the person with the condition responds to their body’s inability to handle sugar.

If medicine can be framed as an art it involves the practitioner being able to elicit information. Then working with that individual within a common frame of reference so that less sugar is consumed.

Therefore context is everything. The following may all apply in assessing outcomes in relation to practitioner-patient dyads:

  1. The age and gender of those involved
  2. The social, political and economic conditions
  3. The history of both in the lead up to current events
  4. The culture of both
  5. The professional interests of the practitioner
  6. The ideas, concerns and expectations of both

Nowhere in medicine is this more important than in general practice. Here the patient is most likely presenting at a very early stage of a potentially life limiting condition. The stakes are high insofar as early intervention leads to better outcomes.

At the same time in most cases, in general practice; what the practitioner offers has only a peripheral impact on the outcome. Most minor self-limiting illness is just that. In time the condition will resolve spontaneously. However there is a significant risk that inappropriate treatment, or for that matter any prescribed treatment could do more harm than good. The outcomes are similarly dependent on the ability to practice the art of medicine.

The first and most important question is why has this person sought the help of this practitioner at this time? If you don’t know then you are unlikely to be able to say if what subsequently transpires is for the best or if it failed, why it failed. The context is often locally and personally defined. Any successful attempt to improve outcomes in healthcare requires attention to context. This is the essence of Patient Experience Design. It is also why general practice is at the heart of the best healthcare systems in the world and why progress in healthcare will be determined by shifting the focus from policies and systems to individuals and relationships. Data is important but no innovation can be deployed without the lens of context.

The JHD invites papers that explore the insights of healthcare practitioners gleaned through their interactions with people. Such insights can be harnessed to deliver more effective ways to achieve outcomes that enhance diagnostic acumen, improve prognosis and satisfaction with what we can provide to alleviate symptoms and reduce distress. Join our facebook page, follow our twitter feeds.

Picture by Christian Senger

We have to be part of the solution because we are part of the problem

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She blinked at me expectantly. Her companion sat in the corner of the room, arms folded staring at the floor. She glanced at him side ways and then said in a loud whisper

We are here about that business last week. You know.

I didn’t know. So I frantically searched through the notes. The man in question had been seen here several times recently for various dressings. Nothing to say how he had been injured or the nature of the wound. At that point she lost it.

I don’t like talking about it in front of him! Because of his you know……well I told the doctor everything a couple of weeks ago. We need a report for the police and a referral for counselling.

I was mystified. The cryptic notes mentioned an injury to the arm and the application of various dressings but nothing about a bashing. She would have to see ‘the other doctor’ for the report. He was on holiday and not expected back for 10 days. Neither of us was satisfied. The next patient didn’t help matters. She had been pushed to the ground at the railway station and injured her wrist. She had been to the Emergency Department a couple of days ago and had been sent to the practice for an X-ray report. I assumed that someone had seen the X-rays and that she hadn’t been discharged with a bony injury. But there was no note from the Emergency doctor, hand written or otherwise and I now had to spend the next 20 minutes listening to musak while the ward clerk searched for a copy of the report and faxed it to me. In any other industry this waste of time would be tweeted as an example of bad service.

Meanwhile we are spending millions of dollars in search of electronic records that will somehow transform continuity of care. The assumption is that given such a record a doctor will document the circumstances in which she has come to reviewing a patient repeatedly or that the emergency department will reliably record why a patient was fit to be discharged. All of this is possible now if only doctors will plan for when the patient turns up when they are on a day off or choose to go to another provider. Hours can be saved each day, millions of dollars can be redeployed to make a system that already serves us well even better.

Assuming the technical challenge of a personal electronic record can be overcome the question is whether such a record will deliver its promise given that not all who work in healthcare are committed to treating the patient as they would wish to be treated themselves. There is no doubt that the free flow of information will help improve healthcare provision however the most valuable data that helps us serve people (history and examination) have to be documented by a human rather than a machine. Innovation should start with a change in the mindset of those who work in an industry. Are you confident that no one you served today would have to have their problems reassessed if you didn’t show up for work tomorrow? If so then we will be on the way to better outcomes overnight.

It’s also hoped the new system will reduce the high rate of medical errors (18%) that occur from inadequate patient information, reduce unnecessary hospital admissions, and save doctors from collecting a full medical history each time they see a new patient. The conversation

Picture by Ben Hussman

 

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

In healthcare better right than fast

365651675_f53581b7f6_zIt may be tempting to dream about being presented with a list of options, preferably as colour pictures. Standing in a very short queue or better still ordering by text and minutes later collecting the order (or have it delivered) complete with a discount coupon for the next visit. You’ve heard the words:

Have a nice day

This MO has been highly successful for selling things that we have now come to realise are harmful. The young lady at the fast food counter doesn’t have to care:

  • If you’ve been there before.
  • What you expect from the product (other than not to be poisoned any time in the next 24 hours).
  • If you can afford it (as long as you pay up today).
  • If you know and understand what you are about to eat.
  • Even if you enjoy the product as long as it complies with the description on the menu.

She is paid a wage and all she wants is to get through her shift and go home.

Joe (not his real name, nor any of the details below), whom I had never seen before, turned up one day and before he sat down starting fumbling through his wallet.

Won’t keep you long doctor. My own doctor is off sick, so I thought I’d pop in here.

He produced a business card from an alternative health practitioner. I noticed that he struggled to take the card out of his wallet.

I just need a letter of referral to this place

Apparently ‘this place’ won’t see patients without a ‘referral’ from a doctor. It could all have been over in less than five minutes. The letter might have said:

Thank you for seeing this man who has asked to be referred to your clinic.

It’s highly unlikely that anyone would have cared what it said as long as it was on a doctor’s letterhead. I could have collected my fee and moved to the next patient. But that’s not how I think it works. I coaxed Joe to sit down. He blinked in surprise. Was I really going to waste time when he just wanted a referral? Turns out he was a widower. He lived with his daughter. He moved to Australia 40 years ago. He was a motor mechanic until he retired and now in his late seventies he spent much of the day pottering in the garden.

That’s the problem doctor. I can’t do any weeding. My shoulders are killing me.

He described severe shoulder stiffness in the morning so much so that he occasionally asked his grandson to help him dress. The stiffness improved in the course of the day but his upper arms were still tender. He had lost weight recently but his own doctor didn’t seem too concerned. No headaches and his jaws didn’t hurt when he was eating. I couldn’t find anything wrong on examining him other than tender upper arm muscles. I had a hunch I knew what was wrong with Joe. I sent him for a blood test and arranged to see him the next day. If I was right I could fix this relatively quickly. Joe was nonplussed.

Thank you doctor. I really don’t know what’s wrong with me but my own doctor says it’s a trapped nerve and should get better. I’m in agony and the painkillers aren’t helping. But these guys at this clinic said they needed a letter before I could see them. So that’s what I was after. I will definitely come and see you again.

Joe was a frail old man, impeccably dressed with a politeness that is typical of his generation. He would have accepted anything and been grateful for it. Joe deserves the best and that doesn’t mean getting him in and out the door quickly with an insincere ‘have a nice day’. Why are colleagues encouraged to behave in this way? MacMedicine is not what the taxpayer ordered. Joe didn’t know what he needed other than pain relief. That’s not the same as being hungry and wanting a burger.

Picture by Brian Wallace

Yet more reasons GPs should not be distracted by pay for performance

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There is no doubt that doctors make mistakes. Mostly people forgive them, the charitable view is that it’s because people recognise that their doctors are human and by and large are trying to do a good job. The issue becomes most problematic when the error might cause a delay in the diagnosis of a condition that is best treated sooner rather than later. And especially when the red flag symptoms of that condition are well documented.

Late in 2014 Devesh Oberoi interviewed men who had presented to a specialist late with symptoms that were later diagnosed as cancer. One of the interviews suggested that the delay might in part be due to a late referral:

I spoke to my GP …that time … and. … I was concerned about the symptoms. I told him that I had seen some blood on my toilet paper and he said … umm … yeah that … since it is fresh blood it could be piles (haemorrhoids) or something. Patient with Rectal carcinoma.

Such delays are widely reported in the literature with some experts calling for better research to establish why the diagnosis of cancer is sometimes late in primary care.

Last week our team published secondary data from an experimental study in which we report that the diagnosis of cancer can be missed even when the presentation is straightforward and there are no distracting issues in the consultation (e.g. co-morbidity, psychiatric illness or social problems). One in eight ‘cases’ presented as short video vignettes to doctors in the study failed to elicit a response that included a referral to a specialist or investigations to establish the diagnosis of cancer. What’s also of concern is that where the management decision was to prescribe something, it was hard to see the benefit. In some cases it might even have resulted in harm. Where the decision was to investigate, the indications for some of the investigations were not immediately apparent. Delays may also have occurred in those investigated if the findings were negative or misleading.

None of this is new. Numerous audits have established similar patterns including one we published in 2004 in which three reasons were given for a failure to recognise patterns of cancer:

  • A failure to consider the diagnosis of cancer. ‘Blinkered’ approach in assessing patient.
  • Inappropriate or incomplete investigation.
  • False-negative investigations.

Despite such findings some policy makers think that it is appropriate to pay GPs to focus more on preventive health; to drive payment structures to reflect this public health agenda and distract doctors at the front line of the health service from their core business, namely giving a patient, who consults very briefly, their undivided attention. Doctors need to reflect when they have failed in someway to deliver a satisfactory outcome especially in cases of life threatening illness. That requires a renewal of the commitment to the process of history taking and examination and to updating the skills to make the diagnosis of conditions that are best treated ASAP. When done properly this is time consuming. When doctors are otherwise incentivised to either collect data or tick boxes the result can be less than satisfactory. That it may be already unsatisfactory even before we are driven to adopt practices for which there is very little proven benefit should lead to a rethink.

In relation to pay for performance the King’s Fund reported in 2010:

What evidence does exist suggests that significant improvements have been made in some areas – particularly for diseases such as diabetes, heart failure and chronic obstructive pulmonary disease –but less progress has been made for depression, dementia and arthritis, and these require a more collaborative care model for a higher quality of care to be achieved.

Alternatively it may be that what we can’t afford is to pay GPs to do better at something at the cost of deskilling them in other aspects of their work.

Picture by David Goehring

An object lesson in caring for people facing difficult decisions

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It was always going to be hard. The property market is super heated. Houses are selling at record prices, sometimes several hundred thousand dollars above the reserve. Coming from overseas and with no experience of auctions, our friends struggled to make any head way purchasing a home. They attended several auctions and soon realised that the first to blink leaves empty handed. Alpha males turn up determined to be the one holding the keys at the end of the day, emboldened by low interest rates.

They urgently needed support from a buyers agent. In the week before the auction the team took them step wise through the process urging them to focus on their choices and then sleep on any decision. They had one member of the team as their designated point of reference. The team included excellent communicators. Listening, reflecting and clarifying before summarising what they thought was being said. The inspections of the property were detailed and accompanied by photographs of every fault no matter how trivial. Comparisons with similar properties and their sale price were presented.

Our friends were urged to focus on the decision to buy and not to become distracted by technical aspects that required professional skills nor speculating on who might be competing for the property. They felt secure that the team would advise them if they were about to offer more than the market might be prepared to bid on auction day. At the same time they were given no guarantees and there was always an element of risk. A pre-auction bid was delivered within 24hours of the auction accompanied by a cheque as a full deposit on the property. The strategy was successful. The team sent them a huge bouquet of flowers and hand written card featuring a picture of their new home. Subsequently a series of messages on what the team had learned about the possible competition they might have faced at auction.

How often in healthcare do people face difficult choices- defined as choices that may result in unfortunate consequences? Elsewhere in the world a member of our family had a very different experience awaiting a hip replacement constantly worrying about issues over which he has no control such as appointments that he is powerless to organise. Rarely if ever feeling that he can focus on the decision to have the operation more than the technical aspects of how and why a hospital schedules surgery. During an illness doctors can do for patients all that a buyers’ agent might do for their clients. Perhaps that should be a quality indicator for those in healthcare where life and limb are at stake not ownership of bricks and mortar.

Picture by Picture by Neil Moralee

The way you practice medicine is about to change

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Healthcare reform is inevitable. We are not doing enough to meet the growing need for healthcare in our communities. A failure to act now could bankrupt our economies or reduce our capacity to maintain a productive, taxpaying workforce. Outcomes in healthcare have many drivers and are not limited to incentives to meet arbitrary targets. Attempts to reform healthcare have not been universally successful with many adverse consequences of misguided policies such as introducing ‘pay for performance’ especially in general practice. There is a limited supply of doctors in some parts of many countries with a relative oversupply elsewhere. There is much scope to improve access to doctors by deploying the Internet without forcing doctors to locate to those areas. There is much to do to reduce medical errors and to curb the cost of treatment. These ten very short videos are the case for the prosecution:

The population is getting older.

The prevalence of chronic disease is rising.

There are not enough doctors where they are needed.

There is scope to radically improve access to medical practitioners.

There is sometimes a failure to communicate with patients.

The cost of treatment is rising above the rate of inflation.

We conduct unnecessary investigations.

There are expensive medical errors.

There is limited flow of information across provider interfaces.

Plans to reform healthcare have not been universally successful.

Picture by Hendel Thistletop