Tag Archives: Patient experience design

Don’t trust data out of context

5331111591_5352e900cd_zIn the drive to solve healthcare problems, it’s tempting to tinker with the essence of what medicine has to offer. When we are trying to give patients answers we often fall back on what we can measure, like blood pressure, cholesterol levels and so on. It’s easy to offer people a number that is a barometer for their health. However it’s just as important to understand our patients and the context in which they seek help. What worries them about their current situation or problem? Can they earn a living whilst they have this problem? How are they coping?

If we rely too much on big data we are failing to recognise the role that the practitioner plays in facilitating the recovery from disease. A fundamental truth is that technical medicine- surgery and drugs have very little to offer most people who seek help. There is plenty of evidence that such interventions may even be harmful. There is no occasion when technical assistance alone will make any difference to a person’s distress. That is not to say that there is no place for surgery or powerful drugs. In most circumstances though it is the interaction between an interested practitioner, who gives their undivided attention, who enables the patient to understand and acknowledge the source of their distress that makes all the difference. The best medicine helps patients to find the resources within themselves to improve their circumstances or alter an unhelpful perspective on a difficult situation. Innovations that enable the patient and the practitioner to arrive at this point sooner rather than later are most likely to make a difference to patients.

Not everything that a healer offers can be replaced by facts and figures, or enhanced by gadgets or gizmos. In fact the true value of the encounter between doctor and patient cannot be audited. Failure to factor this truth into our attempts to innovate will lead to sterile and inevitably harmful efforts to improve the outcomes in healthcare. This is especially true when those innovations are a distraction to either the doctor, the patient or both. How are your attempts to solve problems disrupting the business at hand?

Picture by Lara Lima

There is no curriculum for kindness

For months, my wife had been worried about the mole. I couldn’t see anything wrong with it but then it was on my back and I was peering at it through a mirror. In the end, she put the job of getting it examined by a doctor into my diary and it became ‘urgent and important’.

I decided I’d ask my colleague in the office next door if he could recommend a dermatologist.

Do you want me to take a look?

I hated to impose, it seemed hardly worth wasting a surgeon’s time looking at something I was convinced was benign.

Without a second thought, he bounced out of his chair and headed to his car appearing a moment later with a head-mounted magnifier.

It looks benign. However I have three rules with these things. We remove it if your wife is worried about it, if you are worried about it or if I’m worried about it. It’s a five-minute job. We can’t be sure until it’s sent to the lab. But you know that.

He smiled kindly. It was a small courtesy to a colleague,  but a telling example of how a man you had been a surgeon all his life could still be spontaneously kind. His rule made excellent sense. This behaviour is not in any medical textbook. It’s not recognised as an ‘innovation’ that can improve outcomes. It’s just plain old-fashioned, good-natured thoughtfulness. It doesn’t require a grant or a special piece of equipment or anyone’s approval. It makes all the difference to all of us every day. It’s the sort of thing that speaks of vocation. I’m grateful that my colleague works with me, he is a wonderful communicator and that matters when you are training future doctors.

Picture by British Red Cross

Age, occupation and prognosis may filter what the patient hears


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

Innovating for one of the climate’s biggest public health challenges

4265056770_b589d0437a_zIn a cohort of U.S. women, we found that sun exposures in both early life and adulthood were predictive of BCC and SCC risks, whereas melanoma risk was predominantly associated with sun exposure in early life. Wu et al

Furthermore according to the editor of Nature in July 2014

It is accepted that sunscreens protect against squamous cell carcinoma, and this work [research] suggests that they also protect against melanoma.

This message is not getting through to those who might be able to influence public opinion

To win the U.S. Open, tennis players must overcome fearsome opponents, grueling matches and searing heat. But for some, none of that causes quite as much angst as the prospect of rubbing on a gob of white lotion. Of all the accessories that players have at their disposal, sunscreen may be their least favorite. Some don’t wear it at all. Some apply it before daytime matches, if somewhat begrudgingly. But nobody seems to like it. Brian Costa and Jim Chairusmi

The ambient temperature in many parts of Australia early this year will be well over 30 degrees with a UV index of 11- in other words, extreme. Intelligent and well-informed young men and women may be found fully exposed to the midday sun and for hours on end. Many will not be wearing sunscreen, a hat or sunglasses. This can be observed on the beaches, on the tennis courts and on the cricket field.

The message to seek protection from harmful UV rays needs to be crafted in the context to which it is being targetted. It needs to take account of the ideas of young people who are resistant to messages that appear to impose limitations on what they can do:

Tennis players tend to sweat profusely, especially during day sessions at the U.S. Open, where high temperatures and humidity are typical. When the heat mixes with sunscreen, the sweat can form a gooey substance that gets into players’ eyes and onto their hands, affecting both their vision and their grip.

We need to understand and adapt to the perspective of those to whom the public health message needs to get through. There may be other ways to deliver the messages that are more potent. Watch these videos:

  1. The sun damages your looks
  2. It can harm your vision

Therefore, within Foggs model, the motivation to seek protection from UV light could be targetted better. Ability to apply sunscreen or wear sunglasses also needs more attention. Technology may have more to offer with more user-friendly products. Equally making the equipment currently on the market more readily available when and where they are needed will also help. Finally, it may be worth considering a trigger for the behaviour. Something that gets motivated people with the ability to perform the action to then act on a regular basis. The recipe for such behaviour is typically the traffic light. Red means stop every time. The teenager who gets on the cricket field with sunglasses and sunscreen in his bag needs to be triggered to wear them without mum or dad’s nagging voice to remind him. The behaviour needs to be anchored to something familiar- e.g. stepping onto the sand or grass and the message delivered at a teachable moment. The trigger of television advert is not enough for behaviours that need to be repeated. There is still scope to develop an effective innovation by an enterprising researcher based on the principles of patient experience design. I hope it is you.

Picture by Colin J

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

Context may explain demand in Emergency Departments


You’re heard it so many times before- Why do people go to the Emergency Department when they could see their GP?

Health authorities have revealed some of the more than 210 daily presentations could have been treated elsewhere as a lack of after hours services continues to pressure hospital resources.The hospital’s ED recorded 77,362 presentations in 2015, up three per cent on last year and more than 25 per cent on 2010. In the first three days of 2016, there have already been 683 presentations to the ED, compared with 639 in the same period last, with hospital on track to again break records.The most common reasons for people presenting to the ED in 2015 were possible cardiac chest pain, non-cardiac chest pain, viral infection, abdominal pain and urinary tract infection.Townsville Bulletin

Why do people with seemingly ‘minor’ infections present to a busy Emergency Department? Lots of data but on explanations. Speculation results in misleading conclusions and ineffective attempts to change behaviour. The context was not addressed in the report quoted above.

  • Was it really easier for people to consult a GP on a same-day basis?
  • Why were they more inclined to attend an Emergency Department that may be busier by the day?
  • What are the ideas, concerns and expectations of people in the waiting room of the ED?
  • What triggers a visit to the ED?
  • What experience in the ED sends a message through the community that this is the place to be when you are feeling unwell?
  • What experiences in General Practice appears to send the message that it is better to go to the ED?

According to BJ Fogg three things must be aligned in relation to behaviour- Motivation, Ability and a Trigger. The result of these factors must make it more likely that people will rush to an ED rather than make an appointment with their GP.

The reasons why demand at EDs is increasing begins with an understanding of context in which that trend is taking place. An alternative outcome can be designed with reference to considering the patient experience. Such information can be gleaned directly from the patients but also from the ED staff, the local GPs and especially their receptionists.

In a study of adult Emergency Department attendances we concluded that any attempt to reduce attendance would be challenging. Attenders to EDs are not a homogenous group.

Most patients (97.6%) attended Perth EDs fewer than five times a year. The more frequently patients attended, the more likely they were to be male, middle-aged and late-middle-aged, have self-referred, have mental and behavioural disorders and alcohol intoxication, to not wait to be assessed, and to arrive by ambulance. The groups of patients attending between 5–9 and 10–19 times per year (97.4% of FAs) had more urgent conditions, more circulatory system disease and higher admission rates than all other patients. Jelinek et al.

On the other hand frequently attending children may be a very different case where interventions may be more fruitful:

Frequent attenders (FAs of 5–9 times a year) may be no sicker or more in need of hospital services than those who attend less frequently. The preponderance of respiratory and infectious disorders across all FA groups suggests these could be the focus of further research. We advocate a holistic approach to take into account parental expectations, and a systems approach to change ED attendance behaviour. Gibson et al.

As always context is key and as always there can be no policy making before we fully appreciate what we are observing in these data.

Picture by UW Health

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


See demand in context and respond creatively

9645066390_babd98c3f1_zHello Jill, Oh, I’m sorry I have no appointments to offer you today. the doctors are all fully booked. If your son has a fever try him with some paracetamol and call back on Friday when I might be able to squeeze him in with Dr. Jones. Ok, bye.

Many years ago I overheard this conversation in my reception. Our receptionist giving medical advice without any qualifications. The surgery was over booked. She was harassed, doctors were grumpy and the patients were being turned away without being assessed by anyone.

We noticed that there was a seasonal pattern to this demand for appointments. Most doctors were aware of this trend because there were specific weeks of the year when they avoided taking holidays. Our reception staff kept meticulous colour coded records of such ‘same day’ appointments. When we entered this data on a statistical database there could be no doubt of a seasonal pattern with definite peaks and troughs. What’s more, we could predict the demand for ‘same day urgent appointments’ with reasonable confidence. At this point, it may be important to stress that doctors in the UK are paid a ‘capitation fee’ for serving patients. That means they are paid an annual fee no matter how many times they see the patient.

Understanding that people have a fundamental desire to talk to the decision maker, we settled on the notion of putting the doctor in charge of making the appointment. Patients who requested a ‘same day’ appointment were offered a telephone consultation with a general practitioner initially. Not with a nurse, as happened in some practices, but with their doctor. We believed patients wanted to speak with a medical practitioner, not because the advice they received was necessarily better than that given by another member of the team, but because people in distress want a doctor. Whatever the reason it worked. Important policy makers noticed. Doctors could deal with most requests within a couple of minutes, offer a ‘same day’ slot or something else without the need for a face-to-face appointment. We calculated a 40% reduction in demand for such appointments. Patients loved it, reception staff loved it too (no more arguments about lack of appointments with irate patients) and doctors found themselves in control of their workload. What’s more, we could prove that this simple intervention worked from the impact on longitudinal seasonal trend.

By allowing patients to speak to their doctor when they felt they couldn’t wait our practice chose to treat this small minority of patients differently to those who were happy to make a routine appointment. We acknowledged that these patients had a need that warranted a creative solution. Perhaps you have a group of patients who would benefit from being treated differently too? What is the context in which they seek help? The tired mother with a fevered child does not have the same needs as the young professional who requires a convenient appointment to obtain a prescription for the contraceptive pill. Both might seek an urgent appointment.

Picture by Marjan Lazerveski