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The case for innovation up close and personal

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In the same week that my colleague drew my attention to the new book ‘ The patient will see you now‘, I became part of John’s story. I quote from the book:

Doctors are still labeling patients as difficult. Patients are typically unable to see, let alone keep or contribute to their office visit notes about their condition and their body that they paid for, Frequently they have to consult multiple doctors for the same condition. It may take weeks to get an appointment. The time with the doctor is quite limited, typically less than ten minutes, and much of that is without eye contact because the doctor is pecking away at a keyboard.

John (75) was born and lives in Dublin. He has the generosity of spirit that made Ireland what it is. A working man all of his life he lives to walk to the shops on Saturday morning. Two years ago he had a bilateral knee replacement. In the past six months he has become severely disabled with back and hip pain. He now walks with crutches and spends most of the day in a chair. His aging wife has to help him put on his socks, a friend ferries them to the shops in his taxi once a week. He is in constant and relentless pain. He attends a pain clinic and visits his general practitioner on foot, a hour long walk on his crutches every week. His aging prostate requires him to be within a short dash of a toilet. He finds life a struggle each and every day. He needs a hip replacement.

He was offered a review appointment at a Dublin teaching hospital. The appointment last Thursday was for 2.30pm. Not wanting to keep the doctor waiting he turned up on time and patiently waited in a chair until 6pm when he was finally called in. The senior house officer who saw him was ‘multitasking’, fielding calls from the wards. The patient’s records were strewn on the floor at his feet.

After a cursory examination he advised John that he would have to be ‘worse’ before they could do anything. John politely thanked him for his concern but asked to see the consultant. The consultant offered to refer him to a pain clinic but added that it would take months to get an appointment. John pointed out that, as their records would show, he was already attending a pain clinic and the specialist there told him nothing more could be done and that he needed a new hip. The consultant was unfazed by this news and said he would ‘write to the pain clinic’. They watched him struggle out of the chair and leave the room.

Not one to make a fuss, ever, John took a taxi home. By the time he got home he needed to ‘go straight to bed.

John’s story is typical of the many Irish people who daily endure a third world healthcare system. Ireland’s tax payers, men and women like John forked out for the training of tens of  thousands of doctors who form the backbone of healthcare organisations the world over. But John gave me more. He is grandfather in our family. It pains us deeply to hear that healthcare in that country is now for those with private insurance or those who are prepared to voice their displeasure. Surely it can’t be beyond the pale to organise an outpatient clinic where people are treated with dignity even if, it seems, nothing can be done for them? How do specialists determine who merits the rationed healthcare resources now on offer? John was advised to be very polite to secretaries who have power and influence over their boss’s schedules . The need for reform is compelling. It may not be obvious in ‘official’ data because the whole unpalatable truth is only apparent to those who have not. It doesn’t require research to know that something is very wrong, it simply requires an interest in the experience of those who need healthcare the most.

Picture by Julie Keryesz

My first day as a doctor

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I’ll never forget my first day as a doctor. I donned my freshly laundered white coat, swung my new stethoscope around my neck, clipped the newly acquired Parker pen into my shirt pocket, stuffed a copy of the drug formulary into my coat pocket and made my way to the gynaecology ward of the large Dublin hospital where decades ago on the 1st of August I was to be the new medical intern.

She greeted me with a warm smile as she stood at her desk in the ward office. ‘Sister Eileen Doorly’ it said on her name badge. She must have been in her mid 50s and had the bearing of someone to be respected.

Good morning, doctor.

This was the first time anyone like her had called me doctor and my heart missed a beat.

Me: Good morning, Sister. What can I do for you this morning?

Her: Well, you might want to prescribe an anti emetic for the patients post op doctor.

I hesitated. I knew what the drug was but wasn’t sure about a number of other important details. I hesitated. She watched me closely. Smiling kindly. The formulary was within grasp but I left it in my pocket and chose to ask.

What does the professor like to use post op sister?

Her smile broadened.

That would be stemetil doctor

I unclipped the pen and stood with the nib poised over the first drug kardex.

Me: S..t…..

Her: e..m..e..t..i..l.

Me: Thank you. And what dose does he like to use?

Her: 12.5 mgs i.m. twice a day. 6am and 6pm. The rest, is on your name badge, doctor.

She had a twinkle in her eye. She was teasing me but somehow I could sense that she didn’t mean to be rude. Eileen Doorly spent the following three months teaching me everything I needed to know to get through the most demanding year of my career. She did it willingly, she did it with the deepest respect and she did it with discretion. I am forever grateful to her. I never saw her after that year and because I moved overseas for my specialist training I didn’t have the opportunity to thank her. She also taught me that sometimes it pays to let those who work with you teach you things, to show your vulnerable side and to trust them. I published my first academic paper while working on that ward. It set me up to get a place as one of six to be offered a prestigious training job against stiff competition.

Eileen Doorly inspired that work because in that first week on the ward she explained that my job as an intern was not only to provide basic medical care but to support the catholic Irish women who would be told in the course of their admission that they would be unable to bear children. That experience was critical to my decision to choose to specialise in general practice. In the course of my career I have met a number of people like Eileen Doorly, men and women, older, wiser and more experienced. Always willing to teach, always with the patients best interests at heart. Medicine requires team work, it is a demanding profession in which errors can cost lives. Men and women like Eileen Doorly ensure that patients are not harmed despite the many inexperienced doctors who must participate in healthcare to learn the art.

Picture by Jez

Innovate for quality first

Use of the term ‘quality‘ needs definition before it can be interpreted in any critique of the health service. I propose a definition of a quality as one which can be measured by the extent to which the person with the problem feels that s/he has been seen and heard by a healthcare professional with the requisite expertise. It has resonance with business where if the customer feels that she is not valued she takes her custom elsewhere. However as is sometimes illustrated by some aspiring healthcare providers they understand business but have no clue about medicine. There is a burgeoning of primary care providers, offering something akin to fast food outlets but these are likely to disappoint their clients.

Quality has four benchmarks:

 

There is no ‘quality’ if the patient has no prospect of consulting the person best placed to assist and especially when need is greatest. There are many examples of disastrous outcomes for people who have not been able to access the required expertise in time. In healthcare that may be a surgeon but it could also be a dentist, a physiotherapist, a pharmacist or an allied health practitioner. On that basis it is telling that in Australia access to general practice may be challenging in some communities but so is access to allied health practitioners. For this reason alone these communities have a diminished quality primary care service regardless of any other benchmark.

However ‘access’ alone is a poor proxy measure of quality although it often seems as if the public believes it is the only one that matters. It certainly makes very bold headlines when it fails. On the other hand there is little point in a very accessible service which is not effective. Once the access issue has been addressed the focus shifts to effectiveness. The Royal Australian College of General Practitioners offers a useful list of indicators that might guide a medical practice. Each discipline or organisation is likely to have its own list of ‘quality’ indicators for effective care.

The integration of care providers is a sensitive marker of quality in health care. There are many healthcare issues where a team approach is of critical importance to timely diagnosis or rehabilitation especially when transitioning from another setting. Practitioners in different disciplines rarely work as an effective team not because they don’t wish to, but because team work is inhibited by funding and or organisational  structures. This may be the one area where collaboration could improve quality for modest investment.

Finally, and crucially, continuity of care is a vital component of quality. Simon illustrates the point well. He has been admitted to three different hospitals in the same town over the past three years. He usually finds his way there in an ambulance or via the emergency department. He has two different problems which have been diagnosed as ‘alcoholism and  neurosis’ or ‘epilepsy’ and ‘stroke’ or ‘migraine’. Simon has certainly enjoyed access and on every occasion he has consulted someone who is suitable trained but there has been no integration of providers and the only hope for a good outcome is continuity of care. By any standard, eight CT scans later, he is at risk of iatrogenesis.  After three years he has been told he is fit to drive and not drive in the same month by practitioners with the same specialist qualifications. He has been commenced on antiplatelet medication by one  and advised to discontinue all medications by another. The only hope is that he has the same general practitioner and that continuity of care might be the light in an otherwise dark and it seems radiated tunnel.

Denying people the feeling that someone cares

The conversation I overheard in my practice many years ago went something like this:

Jean, I’m sorry there are no appointments available until Friday. Has he got a fever? Try him with some paracetamol today and I’ll book him in for Friday afternoon. There’s a lot of this flu like thing going around school. Ok, see you Friday.

A receptionist was triaging my patients! Medical qualifications = nil. She looked up with a pained expression, she was carrying more responsibility than I paid her for. And yet it has long been recognised that:

Little difference was observed between the symptoms reported by patients to the physicians as compared to those received by the receptionist staff. Physicians are more likely to use the telephone contact to treat the patient’s complaint with home care advice or a prescription. Receptionists are more likely to use the telephone contact for scheduling an office visit. Fischer and Smith.

What we also don’t acknowledge is that receptionists take calls from their friends, neighbours and relatives. The callers may be worried, unwell, confused, frustrated, angry, grieving, embarrassed, lonely, sad, suicidal, dying or just simply unable to cope. We place them in a front line role in a system that is often over subscribed, under staffed and the first port of call for anyone who thinks they need medical attention. Sometimes receptionists undertake tasks that should be the preserve of someone with other qualifications! We expect the receptionist to be polite, courteous, discrete, sensitive, thoughtful, obliging and intuitive. If she, and it’s usually a she, gets it wrong the practice faces complaint or litigation and a very bad press. Employers have recognised the challenge inherent in the role, but in many parts of the world those who under take this work have no formal qualifications or appropriate training. This issue has received research attention but there are challenges to developing innovations to help reception staff to prioritise patients.

Where contamination of the study population is an early complication, no current gold standard exists to define safe triaging, contextual differences between practices lead to inter-practice variation, and proxy outcomes (improvement in receptionist response to written scenarios of varying urgency) are used. Hall et al
Can we really guide someone who isn’t a doctor, or have any medical qualification, to make appropriate decisions based on a telephone conversation about potential medical emergencies?  There was a recent report of a disastrous failure to appropriately sign post the parents of a very sick child which involved ‘suitably qualified’ people working to nationally accredited algorithms. The issue at heart is that there is a greater demand for access to medical practitioners than supply. In response to demand policy makers have promoted ways to limit or control access to that expertise. The temptation is to innovate for alternatives that don’t involve the doctor. Those who advocate for this approach may be failing to recognise that people in distress aren’t simply disordered machinery in need of a technical fix. They can’t be rescheduled like a car service. That doesn’t mean they need to see the doctor straight away but they do need to feel they have had that experience sooner rather later. People are hard wired to feel better after contact with a doctor- it’s fundamental to how medicine works. That was what we decided back then so we relieved our reception staff from having to determine who was ‘not urgent for today’ when our schedules were full- instead we, the doctors, spoke to the patient by telephone and if we were not absolutely sure we had enough information we saw the patient and we still reduced our workload by 40%. Innovating to ration access to the healer is a bad idea if only because we are deny people the feeling that someone cares. The cost of that loss of connection is a failure to fulfill our purpose in people’s lives.

 

Innovating in the too-hard box

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

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

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

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

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

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

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

Where do innovators start?

Lean innovators can’t help themselves. They see ideas every where. Inspiration is to be found where ever there is a problem and healthcare is full of problems. I’m going to mention three problems:

1. Health care is rationed. Even in countries where it appears to be on tap- it is rationed. For example when it was launched by Britain’s then minister of health, Aneurin Bevan, on July 5 1948, the national health service was based on three core principles:

That it meet the needs of everyone
that it be free at the point of delivery
that it be based on clinical need, not ability to pay

No one believes this is true and the experience of many is that even if it is ‘free’ you may still have to wait for it even if your need is great- simply because the ‘gatekeeper‘ doesn’t recognise the urgency of your need. Here is scope to innovate.
2. Health care is organised around the needs of the provider. In many countries you have to make an appointment at a time, and a place that suits the practitioner. This might mean taking a day off work, traveling a long distance, sometimes, as in my country several hundred kilometers to consult the expert. It is possible that you don’t fit the mould designed for the ‘patient’ in that system. Your culture may clash with the provider- so that you struggle to be understood, cause or take offense and generally find that things are lost in the translation. Consequently inequity characterizes most if not all health care systems. Another prime opportunity to innovate.
3. Health care can harm you. It is possible, some would say probable that at some point in your life the drugs or procedures designed to relieve your suffering may actually harm you or at best do nothing for you.

Simply being a patient in an acute care hospital in Australia carries, on average, a 40-fold greater risk of dying from the care process than from being in traffic, and a 400-fold greater risk than working in the chemical industry.  Australian Patient Safety Foundation

Further honing the indications for tests, prescriptions and procedures may do much to improve outcomes for most of us. For example it has been shown that the participants in trials of most drugs bear little resemblance to those for whom those drugs are prescribed in practice.

Although 61% of new cases of cancer occur among the elderly…..studies indicate that the elderly comprise only 25% of participants in cancer clinical trials.  J Clin Oncol.2003 Apr 1;21(7):1383-9.

Similarly potentially harmful tests are performed unnecessarily and many invasive procedures are carried out for dubious reasons. Finding ways to reduce the scope for harm is therefore a priority.

Innovating at the interface between service providers

At least one in a hundred patients seen in general practice are referred to hospital.

In many countries the referral process hasn’t changed in decades. It’s still done with pen and paper and even in 2013 in some developed countries it still involves a fax machine. What’s interesting about the process is that once the letter is received at the hospital, it is read and then triaged by someone to determine when the patient should be offered an appointment. The decision is made in less than a minute. Everything, perhaps even life or death situations. hinges on the impression created by the writer of that letter.

In a government subsidised system, where there is a need to ration appointments, a patient might be seen next week, next month or six months from now. The reality is that in some cases a patient might wait longer than is ideal and the outcome for them may be compromised, because of what was in the referral letter and how that was interpreted. Who then is to blame, the doctor who was consulted first, or the hospital that arranged a deferred appointment? How can innovation help in this situation?

I’ve been involved on teams that have studied this problem from many different angles culminating in a randomised trial of an innovation in 2012. We came to a number of conclusions. Firstly involving people in innovation when they don’t believe they have a problem is frustrating. Many doctors think their letters are just fine, or that the recipient hardly reads them. Its difficult to innovate in a busy clinic where doctors are working flat out, and the truth is that if the innovation doesn’t make life easier for the doctor as well as the patient then it’s going to be hard to implement.

Secondly colleagues are reticent to demand change from one another, especially when they work in different parts of the system. So, as a hospital specialist I might not feel I have any mandate to require that referral letters contain the details that I like to have. It’s even worse when the paymasters across the sectors are different. In Australia hospitals are funded by State governments, whereas primary care is funded by the Federal government. What’s more primary care providers work to a ‘pay for service’ model. Which effectively means that primary care survives on profits.

Thirdly, it is unsafe to assume that all colleagues apply the same criteria about what clinical scenarios should be allocated an urgent specialist opinion, even within the same specialty, in the same healthcare system, and with reference to nationally accepted guidelines. That was unexpected!

Some problems require a whole systems approach. A problem that has seemingly obvious roots, with a strong(ish) evidence base can be difficult to crack with a lean medicine approach. Where multiple individuals are involved across health sectors, it is absolutely necessary that innovations make everyone’s life easier. Requiring letters to be written a certain way, and demanding that the process is enforced by the recipients, when there isn’t local consensus on what is an urgent case, is not going to work without something else to make it worthwhile for all concerned. What this problem calls for is more innovation when it comes to making the decision to refer. Perhaps more sensitive near-patient tests, which are better able to predict who is most likely to benefit from limited national resources.

What are your ideas for improvement that don’t require people to donate time and effort for no personal gain? Pushing out innovation is not enough, if there isn’t a pull from those at the coalface to adopt those ideas. It isn’t safe, even in medicine, to assume that people will do it, use it or promote it simply because they recognise that patients will benefit.