Tag Archives: future of health care

The case for shared care

People are uncomfortable, if not alarmed, when the behaviour of someone they live with suddenly becomes ‘deviant’, ‘offensive’ or embarrassing; Grandfather becomes disinhibited, son becomes violent, wife starts shoplifting, daughter steals money from home. The unfamiliar moves us out of our comfort zone and we start to question the future, often catastrophising. Many chronic medical conditions result in behavioural changes. People hope that there is something that can be done to remedy the situation quickly so one of the first steps is to seek medical advice. It may be that the person has one of a host of acute or chronic conditions including life limiting pathology; Depression,  psychosis, dementia, substance abuse or cancer. The reaction to the behaviour may also result from misinterpretation or the complainant may be the one with the problem or feel stigmatised by the experience. Once an explanation is found it is often the case that medicine could make things worse- prescriptions, hospitalisation and tests may be harmful. There is also a risk of medicalising the problem as noted by Dworkin.

In the past, medical science cared for the mentally ill, while everyday unhappiness was left to the religious spiritual or other cultural guides. Now, medical science is moving beyond its traditional border to help people who are bored, sad or experiencing low self esteem- in other words people who are suffering from nothing more than life.

Nonetheless people seek help from doctors and there is great scope to assist by sharing care with others who may be able to help with a problem for which there is no pill and people have to revise their ideas, concerns and expectations. It may be that doctors are reluctant to engage people in these circumstances because they do not perceive that they have the resources or expertise to assist with what they consider outside their sphere of influence. Nonetheless people will continue to expect assistance. Epidemiology records that the rates of chronic and complex conditions are set to rise almost exponentially as the population ages and suffers the pathological consequences of poor life style choices. At the same time the cost of healthcare is increasing to the extent that services may be rationed. Already in Australia, even with a relatively healthy economy, the government is proposing cuts to healthcare expenditure. Meanwhile the number of people living with a family member who has a condition where behavioural changes are possible, if not likely, will increase. For instance the prevalence of dementia in Australia will increase from 332,00 to just under a million by 2050. The proportion of people with behavioural changes in the context of  this diagnosis is the majority of patients with an average duration of about 8 months during the illness. Such behaviours may have a profound impact on the emotional well being of the caregiver. It is  acknowledged that some caregivers do not easily adapt to the stresses of caregiving and are at risk in terms of their ability to continue in their role. A failure to maintain this unpaid caring role would have a significant impact on the cost of caring for the patient who may have to be institutionalised sooner rather than later. The conclusion of a study from Sweden was that:

Informal care, measured as hours spent caring, was about 8.5 times greater than formal services (299 and 35 h per month, respectively). Approximately 50% of the total informal care consisted of time spent on surveillance (day and night).

Therefore innovations that allow the medical practitioner to quickly incorporate assistance from organisations that specialise in supporting caregivers will enhance the prospects of sustaining an effective health service for all. The services of organsiations such as Alzheimers’ Australia may be underutilised because of a failure to respond to calls of help from stressed carers. Similar observations can be made about other chronic illnesses including substance abuse, cancer and palliative care where changes in behaviour may be common and medication has a limited role.


Testing assumptions before innovating

Successful innovations are based on addressing ‘real’ problems. They are not founded on assumptions that haven’t been tested. All too often we are presented with ideas that don’t really address the problem from the perspective of the end user. Usually these innovations are designed to solve someone else’s problem and then foisted on an unsuspecting end user. The result is the creation of yet another problem and worse of all wasted resources at a time when economies are under strain.  There is another way. In a very generous contribution with a more sensible approach Julius Parrisius offers this brilliant slide deck. It involves actually finding out what the ‘client’ aka end user needs from you to get through their day, what they find challenging about the problem in question and what’s on their wish list.

The issue in healthcare is that many value propositions are hard to pin down, either because the circumstance are relatively uncommon or because people don’t want to talk about them. They include people presenting/ experiencing:

  • Cancer symptoms- especially the kind that involve embarrassing symptoms- diarrhoea or offensive discharging from unmentionable orifices.
  • Psychosexual problems
  • Sexually transmitted disease
  • Substance abuse
  • Death and dying

Sure you can organise focus groups with a handful of ‘representative stakeholders’ but are you really going to get to the truth? The whole truth? There isn’t really a better way then observing the interaction between practitioner and patient. The challenge is that no one wants you or your video camera in the room while they confess their problem and the care professional doesn’t care for this either. Ethics committees tend to agree. What’s more this preliminary, hypotheses generating research is seldom funded by anyone and sounds daunting- much more so than calling up a friendly ‘stakeholder’ from your list and taking it for granted that they know what they are talking about. So you enlist the ‘support’ of your token end user on one of your ‘project steering groups’ and then hope and pray that they haven’t misled you. Unfortunately it can persuade grant committees that you have done your homework. They won’t find out until they read the press following a launch of your baby and discover that other end users don’t agree. Then you…start again, if anyone still trusts you.

The other issue is that you may also uncover evidence that could land the professional end user into some difficulty-failure to provide evidence based practice with actual patients cannot be overlooked if it is likely to put people at risk in the future. You have a responsibility to protect people- notwithstanding your role as innovator. So, where to from here? How do you get behind closed doors without interrupting the business at hand and while also allowing the practitioner to demonstrate their ‘pain’ with this problem/ issue? Our team has done well deploying simulations. It has allows us to generate and even test hypotheses in an environment in which people have not been put at risk and also relatively quickly allowed us to duck blind alleys before we were committed to them. The key is to accept that the rubber always hit the road when the person with the problem seeks help- in our setting that is usually when they present to a general practitioner /primary care physician/ family doctor and therefore the stage, the props and the actors are already defined- all we have to do is produce enough of the script to let the cast develop the plot- the rest is done by the participants and the truth will out.

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.

Integrating primary care providers

People can, and do, consult other than doctors when they are unwell or perceive that there is something the matter with them. The list is large but includes:

  • Pharmacists
  • Nurses
  • Podiotrists
  • Dentists
  • Physiotherapists
  • Opticians

These care providers offer  a specific skill set but this does not include the ability to deal with undifferentiated conditions or to make a definitive diagnosis of a condition outside their scope of practice. However research suggests that such primary care professionals are often among the first to treat someone with depression, cancer, atheromatous vascular disease, hypertension and or dementia. Early diagnosis and treatment of any of these conditions would result in a much better outcome for patients. That does not mean that these health care professionals could or should be a substitute for medical practitioners. For one thing their business model does not allow them to spend time on dealing with the complexities that are inherent in establishing a diagnosis of such conditions, or to deal with the many others that need to be ruled out in the differential diagnosis. Nor are they equipped to coordinate the care of people with such conditions.

Cheap intuitive and creative solutions include ways to signpost people who present with such problems to the care professional best placed to coordinate their care. Research suggests that when someone is offered a note to present to a medical practitioner suggesting investigations for significant pathology, people will follow up with an appointment and benefit. The components of such an innovation include a way to screen people for risk of significant pathology- the person with persistent diarrhoea seeking advice from a pharmacist, the person with unrelenting back pain who might be clinically depressed, the person with undiagnosed diabetes presenting with visual problems. All these people need to consult a medical practitioner. However they are not always recognised and here lies the scope for relatively cheap innovation to integrate care providers without interfering in the way care providers function within their own domain of expertise.

Instruments of measurement vs. instruments of connection

9597562683_0f1bb9156a_zMany health innovators argue that future advances in health care will come from technological solutions. Things we can measure and quantify. Governments and health care providers are holding their breaths for a magic bullet that can easily, measure and thus fix everything.

People who advocate for technological health solutions think that it’s possible for doctors to routinely consult patients without touching them, or even looking them in the eye.

Stakeholders imagine that that health practitioners spend time with their patients simply to gather and process data. We imagine a future when a patient’s wearable device will be handed over to the doctor, who will have everything he needs to know and more, in order to treat any ill.

That is not to say that we should not innovate, or that technology will not enhance the encounter between patient and healer. However we do need to think about how those innovations will become part of that powerful ritual known as the medical consultation. Technology, high tech or low tech, needs to be incorporated in a way that responds to the person in distress. It should be seen as a means to an end, and not an end in itself. If information was all that was required to get people to adopt healthy choices then why do we make so many decisions that defy logic?

Science has identified that people act on impulse, are moved by emotion, or commit themselves to decisions because it makes them feel good even if they know it’s doing them harm.

The reality is that not everything that matters can be measured. Patients don’t just come to doctors to be fixed. As health care practitioners we mustn’t lose sight of the fact that what patients need as much, (if not more) than, instruments of measurement are instruments of connection.

Picture by Alberto Varela