Tag Archives: Patient experience design

Are we allowing technology to hamper healing?

13866052723_2020820f89_zYou’ve heard it before

I’m at that age doctor when I should have a full body scan. Like it’s being offered here.

or at the very least

Can I have a scan doctor?

When offered radiological tests immediately the public is led to believe that such investigations are necessary. In Australia between 1996 and 2010, total CT scan numbers have increased almost 3 fold. (Medicare Australia, Group Statistics Reports 2010, Report No. 2. Available from here). The number of CT scans is reportedly growing at about 9% each year in Australia. In the USA there are estimated to be 62 million scans per year as compared with about 3 million in 1980 with growing concern about the wisdom of exposing people to increasing levels of radiation.

At the same time the value of most tests carried out is also in doubt. In a study of an academic medical department it was concluded that:

…almost 68% of the laboratory tests commonly ordered…. could have been avoided, without any adverse effect on patient management; this figure corresponds to 2.01 unnecessary tests ordered/patient during each day of their hospitalisation. Miyakis et al

In the context of hospital medicine inappropriate test ordering adds to the cost of healthcare. In primary care there is the additional concern that tests fail to achieve any useful outcome. The patient may experience considerable dissatisfaction with the failure of diagnostic tests to explain their pain and may feel they they are being labelled a malingerer.

Therefore one might pause to reflect before requesting yet another investigation. Physical examination, which arguably obviates the need for many tests has an enormous value to the patient even in the context of advanced cancer.

Most patients (83%) indicated that the overall experience of being examined was highly positive (median score, 4; interquartile range [IQR], 2-5; P ≤ .0001). Patients valued both the pragmatic aspects (median score, 5; IQR, 4-5) and symbolic aspects (median score, 4; IQR, 4-5) of the physical examination. Increasing age was independently associated with a more positive perception of the physical examination (odds ratio, 1.07 per year; 95% confidence interval, 1.02-1.12 per year; P = .01). Kadakia et al

According to Paul Little and colleagues reporting in the BMJ perceived pressure from patients is a strong independent predictor of whether doctors examine, prescribe, refer, or investigate in primary care. It seems, at least in part that we may be responding to such pressures to order necessary tests. On the other hand our perception of the value of examination may be blunted.  As Professor Little wrote:

The doctors thought, however, there was no or only slight medical need among a significant proportion of those examined (89/580, 15%), given a prescription (74/394, 19%), or referred (27/125, 22%) and among almost half of those investigated (99/216, 46%).

One could argue with the doctors’ impressions of the ‘need’ for medical examination. To some extent it is necessary in every case. We may be losing the sight of the therapeutic effect of the examination as part of effective communication in primary care. There is a need to revitalise our ability to heal. At a time of increasing costs in healthcare examining patients is a relatively low cost intervention with significant potential to improve outcomes.

Picture by COM SALUD

Profiting from vanity- they may be targeting someone you love.

Where I live you’d be forgiven for thinking that you will be reported for child abuse if your teenager has less than perfectly straight teeth. Kids are growing up believing they need to be physically perfect.  So when the first crop of zits appears there is a hasty and often expensive trip to the chemist. Treating acne is a $3 billion industry in the United States alone.

..but i just feel so ugly when i see pretty girls with perfect skin around me.. it just makes me feel terribly disgusting, honestly. like i’m less of a person. it’s not fair. at my age there’s so much pressure to look beautiful constantly. even though i know most people don’t care how good you look a lot of them are secretly judging inside… everyone does it, even me..Nyla

Those in the age group 15-24 account for 7.6%  of consultations in general practice. Significant or life limiting pathology is unlikely in this age group but for many these meetings with their doctor will set the tone for a life long relationship with their main healthcare provider. For young people acne and eczema are the reason for almost one in three consultations with a GP. Sadly it has been reported that some teenagers get a very poor deal when they pluck up the courage to see a doctor:

It’s not that he doesn’t listen … sometimes he doesn’t fully comprehend that he’s talking in a way you can’t understand … it would help if they talked to teenagers. ( As reported by Jacobson et al in the BJGP)

This could be a missed opportunity to forge a relationship with the patient. If you are a doctor it may be worthwhile rehearsing a lucid explanation of common problems presented to you, including and especially acne. There is a bewildering array of opinions on this problem. Indeed the conclusion of research on this topic was that the majority of young people are getting information from non physician sources and there may be a need to evaluate the resources they are using to make sure they are receiving appropriate, helpful information. That includes parents who would rather their teenager would learn to live with her spots and expect you to endorse that view.

For those who want a ‘cure’ the opportunity for to profit from their distress makes them vulnerable to the most unscrupulous practices. $3 billion USD represents a substantial market for lotions, potions and diets that don’t work.

Substantial numbers of those surveyed had ideas about cause, treatment, and prognosis that might adversely affect therapy. Rasmussen and Smith

The truth is acne is a manageable condition, it’s just a matter of finding a treatment that works for an individual. For most people, it may take few attempts at find something that works. For some, over-the-counter topical creams are fine, for others, oral antibiotics or hormonal treatments work better, and yet others only respond to drugs prescribed by a dermatologist, with multiple courses required in relatively rare circumstances. The goal of having clear (or at least totally acceptable) skin is not unreasonable. This is a teachable moment in the interaction with young people.

Picture by Caitlin Regan

Address the patient’s greatest fears ASAP


I think my son has meningitis.

I glanced at the boy who was now walking across the room to look more closely at a poster on antenatal care.

I don’t think so was my first thought, followed by thank you for telling me exactly what you are worried about. It’s not always that easy. Often the ‘hidden agenda’ remains just that- hidden. The longer it remains unchallenged the greater its hold. Then it’s much less easily to address head on. Sometimes you get a sense of it from the smell of fear as it comes into the room. Occasionally it’s hidden in a request for curious tests:

Could you check my vitamin levels?

My favorite is those who come for ‘check ups’ and are seemingly asymptomatic. I recommend the paper by Sabina Hunziker and colleagues. They studied 66 cases of people who explicitly requested a ‘check up’. All consults were video recorded and analysed for information about spontaneously mentioned symptoms and reasons for the clinic consultation (“open agendas”) and for clues to hidden patient agendas using the Roter interaction analysis system (RIAS).In RIAS, a cue denotes an element in patient-provider communications that is not explicitly expressed verbally. It includes vague indications of emotions such as anxiety or embarrassment that patients might find difficult to express openly and that prevent the patient from being completely forthcoming about his or her reasons for requesting a consultation. All 66 patients initially declared to be asymptomatic but this was ultimately the case in only 7 out of 66 patients.

Back to the boy with ‘meningitis’. He had a fever and aches and pains. However according to Dr. Google, who mum consulted just before rushing to the surgery, if the child had ‘cold hands’ one of the possibilities is that the child has meningitis.

I examined the child thoroughly and found that he had a mild pyrexia and signs of an upper respiratory tract infection. He was awake, alert and clearly interested in his surroundings. He was persuaded to smile and had no signs of septicemia. As this is a common fear in anxious parents I am prepared with standard advice that might be helpful and outline the way meningitis presents. Something I have encountered in practice.

There are many other fears that are presented in an urgent consult. In 99.99% of cases, they are unfounded. However the opportunity to allay the patient’s fears is also an opportunity to forge a bond that may be of enormous assistance when those fears prove to be well-founded. It may be worth considering how you will respond to patient fears of the many monsters that appear in the dead of night; cancer, heart attack, Kawasaki’s disease and meningitis in particular. Bearing in mind these monsters do occasionally present in the most atypical fashion.

Picture by Pimthida


How improving the experience of hospital death can help redesign healthcare


The residents always approached my father as if he was a person and there weren’t any divisions between them. They didn’t come in and say, “I’m Doctor so and so.” There wasn’t any kind of separation or aloofness. They would sit right on his bed, hold his hand, talk about their families, his family, golf, and sports. From Steinhauser et al.

The chances are when the times comes you will die in hospital. It may be sudden or it may be expected and either you will die a good death or the experience for you and those who are left to grieve will make a bad situation worse. Charles Garfield put it like this:

A good death is no oxymoron. It’s within everyone’s realm of possibility. We need only realize its potential and prepare ourselves to meet it mindfully, with compassion and courage

John Costello concluded his research on patient experiences of death as follows:

The findings also challenge practitioners to focus attention on death as a process, and to prioritize patients’ needs above those of the organization. Moreover, there is the need for guidelines to be developed enabling patients to have a role in shaping events at the end of their lives. John Costello

Therefore, the needs of the ‘organisation’ may impact adversely on the experience of death. These might include the need to adhere to routines such as ward rounds, meal and medication time on open wards which may make it difficult to cater to the needs of the family when the patient dies.

A good place to start with innovation is to consider what, how and when things go wrong. Costello’s interviews with nurses identified several determinants of a bad death:

  • Sudden, unexpected or traumatic deaths especially soon after admission
  • Death other than on the ward
  • Family not aware of impending death or family conflict a major feature
  • Lack of dignity or respect
  • Diagnosis uncertain

Therefore, the key features are the circumstances surrounding the death. The consequences are far from trivial:

Dying patients with unresolved physical and psychological problems, such as pain, nausea, vomiting or spiritual distress, and who were unresponsive to treatment or nursing care, were invariably regarded as experiencing bad death. John Costello

This begs the question why not prepare for death in every hospital admission especially where death is a less than distant possibility. The majority of hospital deaths occur in those over 75 years of age. How is the team prepared if there is a death on the ward expected or otherwise, whether it’s convenient to the routines or not?

Achieving seven goals appear to mark a ‘good’ death:

  1. The patient should be physically, psycho-socially, and spiritually pain-free
  2. Recognize and resolve interpersonal conflicts.
  3. Satisfy any remaining wishes that are consistent with their present condition.
  4. Review their life to find meaning.
  5. Hand over control to a trusted person, someone committed to helping them have the kind of death they desire.
  6. Be protected from needless procedures that serve to only dehumanize and demean without much or any benefit.
  7. Decide how social and how alert they want to be.

Many of these goals are in the purview of the doctor and her prescription pad, others require all those involved to help prepare for an event that will impact on everyone associated with the patient. Healthcare is now a team effort and nowhere more than at the end of life.

When physical symptoms are properly palliated, patients and families may have the opportunity to address the critical psychosocial and spiritual issues they face at the end of life. Steinhauser et al

The point is if we prepare every hospitalised patient who may conceivably deteriorate and die as if we were preparing them and our units for that experience we will treat all patients with greater dignity. That’s the foundation of good outcomes for healthcare staff and the dying.

Picture by Alyssa L. Miller

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