How to stop a runaway train: Part 3

This is the final instalment in a series reflecting on my attendance at the Preventing Overdiagnosis Conference 2019 (PODC2019). Read part 1 here and part 2 here

There is no doubt that this ‘too much medicine’ train is off course in the musculoskeletal realm. No one is in control and this runaway train may even be speeding up. As our society improves in almost all other walks of life, we are getting sicker? We are becoming more painfully disabled year on year (Ref). In no uncertain terms, progress in stopping this train has been incredibly slow (Ref). We have been unable to muster much change from a key party in this conversation – the clinicians. Through this piece, I will discuss reasons why what we have tried hasn’t worked. And although this train seems completely lost with no chance of redemption, I will attempt suggestions to instil hope that we can get it back on track. 

Our runaway train has a complex web of factors driving it towards somewhere we never set out to be and adding to its inertia. We visited some systemic and patient factors in parts 1 and 2, these are mighty challenges. But solutions to this runaway train’s inertia thus far are akin to throwing boulders at the tracks and hoping for change. I will visit one type of boulder (of which there are more) in the form of Clinical Practice Guidelines (CPGs). It’s not that these boulders are a bad idea, it’s just that they empirically haven’t been successful for their intended purpose. So marked has this failure been, that there is now a dearth of work exploring it (Ref, Ref, Ref, Ref). These data reveal the extent to which CPGs can be misinterpreted and disagreed with in rich quotes like these (taken from systematic review by Slade et al 2016)

“ Some of it is a wee bit insulting.. It reduces medicine to… all these algorithms” Crawford (2007)

“ They are setting the profession back 20 years” Parr (2014)

These are extreme quotes, but they do provide a proxy for the context in which CPG’s are supposed to work. CPGs can be defined as

evidence based statements that include recommendations intended to optimise patient care and assist health care practitioners to make decisions about appropriate health care for specific clinical circumstances.” (Ref).

Successful implementation of guidelines should reduce the gap between research and practice by expediting advances in every day practice and reducing inappropriate variation. Guidelines, then, are a tool for clinicians to use in situations where multiple therapies are available, or where uncertainty in terms of treatment options exists. They are ultimately one of the most important tools HCPs are endowed with and should promote all of our best rationalistic tendencies (Ref). Instead, they don’t seem to promote reason or science at all.  

Where is our reason?

This may be because CPGs represent a direct attack on something that every HCP is endowed with: an identity. Clinicians are fallible humans and reason goes out the window when our identity is involved. CPGs should be a neutral and innocent entity; they simply provide a reductionist solution to a complex problem. The outcome, however, couldn’t be further from neutral. CPGs cut deep into something primal; beyond the thoughts of ‘reducing my clinical practice to a recipe’, they uncover the embarrassed school child whose capacity to help people is suddenly threatened (Ref). It’s threatening to many other things, like livelihoods and money spent on extravagant courses, but mostly CPGs are threatening to what people do. Clinicians are largely defined by what they do and CPGs specific to low back pain specifically identify and set limits around these modalities (Ref). This would be akin to telling a leopard not to have so many spots. What I’m not saying is that leopards shouldn’t be told this, simply that it’s hard telling a leopard to have less spots; you should try it. Clinicians can also be cruelly tribal amongst each other, bitterly divided by these CPGs amongst other issues. These issues, like the manual therapy versus no manual therapy debate, are not trivial by any means as they deeply impact the outcomes of patients. They do, however, quickly descend into mud slinging, and tribal psychology may be at the heart of this. Evidence based practice is part of the enlightenment of medicine, but this levity above our basic human instincts has yet to extend into cross-HCP communication. The number of issues HCPs get tribal about is mind boggling; is another ‘us and them’ scenario really the thing we need? 

Another well-established ‘us and them’ scenario is the gap between research and practice. The ‘know-do’ gap is a complex and dynamic place, one which has spawned a flourishing scientific practice (implementation science). A gap, which no CPG, no matter how nuanced in its language, could effectively close. The epistemology involved in implementing guideline based care by orthopaedic surgeons has been robustly studied by Amy Grove and colleagues across three hospitals in the UK (under the NHS).  When discussing knowledge translation, a first salient question needs to be, where does the knowledge come from? Made clear from her analysis, it can come from many places indeed.

Grove and Currie levels of knowledge in clinical decision making ortho surgeons NHS 

Once again, simple low hanging fruit in the ‘low value care’ discussion might be ensuring practitioners are aware of the CPG. But following this mammoth task, you still have a complex array of knowledge, from which the practitioner can weigh up and choose from when making decisions about care. One has to ask; is this even about knowledge? If it is, what knowledge do we value above others? Once again, human psychology could be at the heart of the matter. More fantastic thematic analysis by Amy Grove is presented by the below hierarchy.

Grove and Currie decision making in clinical decision making ortho surgeons NHS

Moving past the individual level of implementation, we get to groups. It has long been known that people who belong to a group will vehemently defend a concept that is demonstrably untrue (see Flat Earth Theory for background) because refuting it will mean a painful ostracism. When we belong to groups, our knowledge can be occluded from view because something much more powerful takes over: beliefs. Beliefs are richly entwined in our identities, more linked to our need to belong than knowledge. Certainly, the social construct in which decisions take place seems to be more predictive of what kind of care people receive, not, as would seem intuitive – the specific provider (Ref, Ref). Groups are incredibly important and much work has been done into finding out what clinicians state as barriers, but we have only just begun to scrape the surface of uncovering clinician beliefs and how to change these surrounding CPG implementation (Ref).     

A key clue to changing behaviour around evidence-based, clinical guideline based care is provided by this snap taken during Teppo Jarvinen’s keynote at PODC2019. It’s called GOBSAT (Good Old Boys Sitting Around a Table).

GABSAT

Involve me and I learn

On a more serious note, the problem of changing clinician behaviour around guideline based care is a question which continues to perplex even the best researchers. There is a derth of literature looking into what successful CPG implementation strategies should look like (Ref, Ref). Thankfully CPGs aren’t simply parachuted in from a height in isolation (tell me and I forget) and gone are the days of traditional guideline education strategies (tell me and I forget) (Ref). It is clear that multifaceted strategies are more successful than single component ones, but we have no real idea about what components may be most effective (Ref). There is high level demand from clinicians to be actively involved in implementing guideline based care (Ref). One reason for this might be that each strategy has to be both tailored to the context in which care decisions are made (including multiple levels of health service, hospital, ward, team) and tailored to the individual that makes them. This level of complexity is hard to garner an appreciation of, unless you’re there on the ground making decisions every day. Indeed, the peer review and auditing systems of implementation show promise (Ref).

A great example of this was presented by Adam Elshaug during PODC2019. His work with the Medicare Benefit Scheme Review Taskforce and Australian orthopaedic surgeons is an interesting take on this issue. He produced ‘dashboards’ available to all surgeons operating in a particular health district. Dashboards are populated with all of the ‘billable items’ a surgeon can perform (different surgeries), stratified by hospital. This notifies surgeons, in real time, about their volume of specific surgeries, which provides some objective data into performance. Although this may be at risk of adding more ‘noise’ to a chaotic decision-making framework, it does another crucial thing. Besides, most clinicians get used to using a computer system in this way (Ref). These dashboards also include peer data, which creates an altogether different effect. 

How does behaviour change? Slowly, incrementally, probably randomly. But it groups, peers and tribes are important Do allied health HCPs need this kind of system? Some may see this as another invasion into the clinical sanctity, but Adam’s results seem promising so far (unpublished data presented at conference) and if surgeons can change behaviour then… Well you know the rest of the joke. I think allied health HCPs have an inertia all their own when it comes to the low value care overtreatment conversation. Typically given a ‘bye ball’ because no one dies from too much of ‘our medicine’. But this is a moral hazard we need to shake, our patients’ deserve better.    

Another take on the wicked problem of social groups and behaviour change is depicted with the quote by Max Planck (also presented by Teppo Jarvinen at the conference), 

“ A scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it.”

Rather than revert to nihilism about the current predicament we find ourselves in, we can instead take on this challenge with open arms. I would be the first to admit the preventing overdiagnosis and overtreatment conversation can tend to a very paternal and elitist one and this can add to the problem, but it doesn’t actually have to be this way. That’s why I’ve written this blog, that’s why countless people toil away getting information to where it needs to be. This needs to be a discussion that everyone is involved in. If we embrace our tribal psychology rather than ignore it potentially we don’t have to wait until the previous generation scuttle off this mortal coil.

Having trust in the slow, steady pace of change for the better is a start. Trusting in the next generation of clinicians to make better decisions is a necessary stance; because they inevitably will. The new generation of clinicians are already better at providing high value care and more receptive to guidelines (Ref). Stopping this runaway train, may require more boulders, or something more subtle. Whatever it is, it needs to involve everyone. We do need health system change, but after this happens, which it inevitably will, it just leaves us. In the words of Hans Rosling, 

“I’m not an optimist, I’m a very serious possibilist.’

So, how do you stop a runaway train?

Upton Sinclair (2)

 

 

How to stop a runaway train: Part 2

This is part 2 of a reflection on the Preventing Overdiagnosis Conference 2019 (PODC 2019). Read part 1 here.

Overdiagnosis is closely related to overtreatment. So much so, that the two often become conflated and confused. Overdiagnosis can often lead to overtreatment but not always, and overtreatment can occur without overdiagnosis (Ref). So as not to continue the confusion, in this second part of my reflection, I will refer to overtreatment.

Overdiagnosis and overtreatment ven diagram
Overtreatment in the musculoskeletal realm is a much more complex issue than many can appreciate. It is indeed the rest of the train – the bulk of it. It is unruly, cumbersome and just so happens to be where the majority of people spend their time. This part of the train holds the passengers – patients and clinicians alike. The issue with this train is that it has completely lost its way, incapable from deviating from a path so removed from the one it may have originally set off on. This runaway train may look like it’s on-track from the outside, but when you’re on the inside it’s terrifying.

It’s a serious problem

The musculoskeletal realm, as far as the media goes, is a nuisance not a real problem because most people don’t die from low back pain or arthritis. Except when people do die. Like they are dying in one of the more terrifying trends of recent times. The opioid epidemic is well known in the United States for killing more people than HIV, car crashes or gun violence (Ref). And it’s coming to Australia (Ref). The Australian problem is very much real and it continues to march towards us unabated (Ref). And it’s strange how little coverage this actually gets.
This trend persists despite all guidelines recommending against pharmacological management as first line care in low back pain (Ref, Ref).

Opioid epidemic numbers
Guidelines specify that for chronic low back pain,

Clinicians should only consider opioids as an option in patients who have failed the aforementioned treatments and only if the potential benefits outweigh the risks for individual patients and after a discussion of known risks and realistic benefits with patients.” Qaseem, A., Wilt, T.J., McLean, R., Forciea, M.A (2017)

Choosing Wisely has paved the way with opioid education programs, for both practitioners and patients (Ref, Ref). A researcher who has been a maverick in this space is Emily Karanges from Sydney. She presented some amazing work at the PODC 2019. Unlike the imaging issue, the opioid epidemic represents low hanging fruit; it’s obviously a case of ‘too much medicine’ and the lines in the sand are clear. We need to act fast to avoid more deaths.

It’s a wicked problem

If only winding back too much medicine in the rest of musculoskeletal care was low hanging fruit. The rest of the train is filled with a complex web of what may be termed ‘low value care’. Value as it pertains to healthcare, continues to be an incredibly hard thing to define; it is often discussed but poorly understood (Ref, Ref). Broadly, value-based care means care where the clinical benefits outweigh the risks and the cost (Ref). It is dynamic and mutable. Just as in any other field, value is defined around the customer. Therefore in healthcare, value is defined as patient health outcomes achieved relative to the costs of care. It is value for the patient that is the central goal, not value for other actors per se (Ref). Value is an inherently loaded term; not only does this present an ideological attack on the sanctity of patient-clinician interaction but also confronts larger socio-cultural ideas (Ref, Ref). If value is defined by the “customer”, shouldn’t we let the free-market decide what this proves to be? What if you think we have patients not ‘customers’ and this whole discussion smacks of neoliberal progression? If universal healthcare is something you believe in, then should we be much more punitive around the types of care available? Importantly, practitioners may wonder, ‘If I’m getting people better, doesn’t that mean I am providing value to them?’ This much maligned term creates confusion; confusion creates inertia; and inertia keeps this train rolling. The problem of low value overtreatment is a really wicked problem to solve.

Buchbinders problem list
Dr Rachelle Buchbinder presenting a list of factors in this wicked problem. Hint: it’s more wicked than this.

Patients on the train

It is a key fact that patient expectations are a central tenet to the confusion around the value discussion. It is clear that patient expectations are an extremely powerful predictor of treatment success; however, this presents yet another quagmire (Ref, Ref, Ref). A common misconception is that if you don’t do what the patient wants, then it will violate their expectations and the outcome will suffer, thus reducing the perceived value in care. But this has yet to be borne out by any empirical evidence. In fact, there may be nothing wrong with expectancy violation, as long as it is contextualised (Ref). And although it is clear that patients want a diagnosis, they don’t seem to have similar feelings about treatment (Ref, Ref).

“At such moments, talking about the moment of diagnosis, doubt is being smothered and certainty is manufactured”

This desire for certainty could be adding the problem of overdiagnosis, but it may not be adding to the problem of overtreatment. Patients do expect healthcare professionals (HCPs) to do something but these wants and desires don’t seem to extend to specifics for the most part (Ref). With the utmost respect, what we could be seeing here is a case of classical conditioning. Just as Pavlov’s dog expects food as the bell rings, patients may expect certain types of care because it is all they’ve ever received. So although patient expectations may add to the confusion around the value discussion, it’s probably not in the way commonly espoused. All the same though, the inertia increases.
I won’t pretend that in this age of insta-garbage and meta-misinformation patient expectations aren’t impacted upon by other, external factors. These Google and Facebook-led expectations add to one of the most important jobs of healthcare; to educate and inform patients of what can help and what can harm them. Indeed, this is one of the most problematic issues of the modern age. The pursuit of an appropriately informed and critically thinking patient has engendered many responses; one of them is shared decision making. Shared decision making is obviously a worthwhile endeavour, as patients not only should be involved, but in fact really want to be involved in their care (Ref). To have patients at the centre of information exchange really ought to be standard practice, but progress in this arena has been slow (Ref). It seems the ‘real-life’ efficacy of this process is hard to discern (Ref, Ref). As part of the shared decision making process, decision making aids have proliferated throughout the health landscape. Producing these aids involves a lot of time and effort but also can involve unwanted and unscrupulous actors. There is now a copious amount of online decision making aids produced by pharmaceutical companies for syndromes you probably didn’t know you had (until you take the test) for which, conveniently, they will also sell you a remedy. It’s not only the obviously conflicted cases of decision making aids that are fallible. Legitimate, well produced aids can involve conflicts of interests beyond financial gain. Rachel Thompson from the University of Sydney is pioneering some fantastic work into rigorously evaluating these tools (Ref). Again this doesn’t take away from their merit, it simply exemplifies what a wicked problem we seem to have. What is clear is that a simple aid is not a magic bullet in undoing ‘too much medicine’ (Ref). The decision about what kind of treatment to receive is a dynamic and complex process. It is easy to talk about shared decision making, but harder to do and even harder to see what works, that’s if it works at all. It may be that in aligning the issues of value and patient centred care, what we may need to do is re-work the very fabric of our healthcare reality. A reality in which the train is going in a very different direction.

The tracks are set

Because the direction we are heading isn’t working and the tracks of the train are set. It keeps patients and clinicians from alighting (if they wanted to). We have a funding system that incentivises clinicians to do more at every level. The activity based funding (ABF) model is a proposed response to increased cost and accessibility of healthcare; the free market should improve efficiency, as it’s supposed to in other realms. It is now the dominant healthcare funding model locally (in Australia) and internationally. Although there are many guises to this model (synonymous terms in policy include – ironically – patient-centred funding and performance based funding), its primary function is to reward activity above all. A large systematic review of ABF models from OECD 10 countries demonstrate that when this experiment has been going on the longest it actually results in more episodes of care over time (Ref).

journal.pone.0109975.t002
While this system may manage simple cases well, it completely mismanages complex patients (Ref, Ref). And it just so happens that complex health needs create the majority of healthcare use (Ref). The data show that people with musculoskeletal conditions are more likely to have co-morbid conditions, so the population we primarily deal with are very much included in this problem (Ref). One has to ask, has this experiment worked? If we want customers for life, then this could be a positive or a negative depending on your vantage. There may be movements internationally towards more nuanced funding models for hospital and public systems, but change is difficult and will be slow (Ref).
We also have a system that may not even fund the care our patients actually need. Our patients exist within a complex web of social and medical needs. Care that accounts for all of these needs, which provides the optimum outcome for the patient at least cost to the healthcare system should be employed by everyone. This is high value care and our funding system seems not to value it much at all. A good, workable example of this is government rebated management of chronic conditions under the Chronic Disease Management scheme. Patients who have complex care needs are provided a referral to a small list of allied health HCPs, who are remunerated at a staggeringly low $52.95 per session. A minimum duration of service is set to 20 minutes and patients can only have 5 of these appointments per calendar year. This doesn’t engender a lot of enthusiasm on the patient or practitioner’s behalf to meaningfully change any factors that contribute to these complex health needs.

Not only do funding systems provide incentives to do more of the wrong care, they provide disincentives to give enough of the right care.

This train is surely very off course.
This is not absolving responsibility for the practitioner; I will explore that next. It is, though, an explanation demonstrating that the very system we exist in makes high value biopsychosocial care a difficult choice. Akin to jumping from a runaway train. A train whose momentum is maintained by the people involved. ‘Too much medicine’ in the musculoskeletal realm is a monumental problem. Like any wicked problem, the solutions need to be advanced, moveable, nuanced and laser focused. That’s probably not what we’ve tried so far. Stay tuned for part 3.

Upton Sinclair

How to stop a runaway train: Part 1

This blog is a reflection on the recent Preventing Overdiagnosis Conference 2019 in Sydney, Australia. This is a concept far too complex to fit into any publically consumable blog, so for brevity and background, I recommend you read all of Lisa Schwartz and Steve Woloshin’s work or Ray Moynihan’s work. Some selected work is (there are probably far better examples) here, here and here.

Richard Dawkins (1)
The overdiagnosis concept can apply to all of medicine, but it may be most well known in the fields of cancer, cardiovascular and diabetes. I will focus on the musculoskeletal application of this concept. I think it’s important to zero in on this area amongst the broader ‘too much medicine’ concept because the musculoskeletal problem dwarfs the others mentioned. Chronic pain is costing more to the Australian Society than cardiovascular disease and diabetes combined (Ref). It is literally crippling our society. Musculoskeletal problems represent the majority of chronic pain conditions, and low back pain represent the majority of musculoskeletal problems – for this reason I will use these terms interchangeably throughout. If the medical system has become unruly in these other areas, then it is a runaway train when it comes to musculoskeletal medicine. When pain is concerned, ‘too much medicine’ is a train we no longer have control over, it is filled with zombie patients and practitioners and the best we can muster is a few rocks thrown at the track.

Overdiagnosis in musculoskeletal medicine

Overdiagnosis has been defined as,

“Making people patients unnecessarily, by identifying problems that were never going to cause harm or by medicalising ordinary life experience through expanded definitions of disease.” Broderson et al 2018.

Unless you have been hiding under a rock, then you will be well aware of the significant problem that this represents in musculoskeletal medicine. The real problem, in my opinion, is that these labels can be applied by just about anyone who claims to treat pain. And in the current landscape, this can be anyone from your local GP, your naturopath to the global conglomerate whose advert you just saw on TV. Diagnosis is not reserved to the small minority with imaging or prescribing rights; it is a fluid, uncertain process which has far too many fingers in the pie. So uncertain, in fact, that 95% of all low back pain cases are given the moniker of ‘non-specific low back pain’, meaning our diagnostic process has been unable to find anything specific causing pain. If you know anything about the science of pain, you’ll understand how utterly nonsensical the concept of ‘finding pain’ really is. Although we find a lot of other things, it doesn’t seem to correspond to treating someone’s pain. With all our fancy imaging modalities we seem to be unable to find this mythical beast.
And it’s not like we haven’t tried. There is a large body of work demonstrating the rate of imaging is increasing across primary care (Ref, Ref, Ref). This is in spite of a very clear message that routine imaging is not recommended by all guidelines of spinal care (Ref). When imaging is ordered for spinal pain, without the suspicion of red flag pathology, we call this ‘inappropriate imaging’. A glutton of data was presented during the conference by fantastic scientists demonstrating the ‘inappropriate imaging’ rate remains fairly constant, while the overall imaging rate is increasing (mostly unpublished work from Adrian Traeger, Sweekriti Sharma, Romi Hass from the Institute of Musculoskeletal Health, Sydney). Which means this increasing rate of imaging reflects an increasing rate of suspected red flag pathology. This problem is perplexing and raises a few questions. Does this increase in imaging really reflect an increase in suspected red flag pathology? Is this a red herring? Are clinicians lying or billing incorrectly? Or is it just hard to know what a clinician deems appropriate in the complex melee that is the clinical encounter? Lastly, and probably most accurately, does this confusing conclusion reflect just how complicated the diagnostic paradigm is in low back pain?
The cost of spinal imaging is small compared to the overall burden of low back pain. ‘Inappropriate imaging’ costs our Australian government something in the region of $23 million per year (Ref). This information is freely available from medicarestatistics.humanservices.gov.au. The overall burden of low back pain of around $9 billion; that’s right imaging accounts for less than 1% (Ref). This begs the question, is imaging the real red herring of overdiagnosis? Another way to look at this may be to understand the downstream effects. In other words, does it affect the way people with low back pain recover?
Surprisingly, the argument could be made that it doesn’t. In one large cohort of over 5000 non specific low back pain patients, imaging did not meaningfully alter outcome (Ref). In another randomised control trial, from the UK, consisting of 782 non-specific low back pain patients there was no difference found in clinical outcome with early imaging (Ref). What I don’t think this does is refute all clinical practice guidelines and puts the scientific consensus in doubt, rather it highlights the complexity of the issue. While imaging may currently prove to be a confusing picture, it alludes to a far more pervasive and far reaching aspect of the medical system’s overdiagnosis. Imaging might just be the tip of the iceberg – the first carriage in the runaway train that is the medical system. There are many ways to ‘create patients’ and label someone pathological, and maybe imaging is merely a tool kept for those that can wield it.
Words can harm and it’s the process of labelling, not imaging, that may be the bigger issue in diagnosis. In some lovely (unpublished) work by Mary O’Keefe presented at the conference, this concept has been explored. She has shown that when people with and without low back pain are exposed simply to different sounding words to describe low back pain, this has a profound impact on the perception of how serious it is and what treatment they’ll likely need. These labels were split into two ‘kinds’ and these were randomised amongst all people, she was able to test this in a novel way with a large sample. In a nice representation of the problem, she called these serious labels ‘biomedical labels’. These biomedical labels come from a system whose reason d’etre is to fit people into boxes in order to apply the appropriate treatment. This biomedical system involves all manner of professionals and we are all culpable in labelling patients in our own scary language. These labels lead to overtreatment and disability (Ref). This is the runaway train we need to figure out how to stop; our patients deserve it.
So while imaging may be the ‘above the line’ way to label patients, it still represents a fairly small portion of this runaway train. The rest of the medical system takes up the slack in producing disabled patients with consistent and unabashed use of scary labels. This ‘below the line’ behaviour mames people and we have only just begun to explore it, let alone think of ways to stop it. We’ve only explored a small portion of this problem, the first two carriages of the train. We still have the rest of the train to explore in later instalments. We will also explore why the people on the train really matter and why the rocks we’ve thrown at the tracks haven’t worked. Stay tuned.

Why everyone should take some time to change their relationship with social media

There is currently a high degree of moral panic around social media. In my opinion, the push-back on social media, and the companies that own the platforms, is not without justification. It’s simply that the justification is not all that accurate. The current moral panic does, as it tends to, centre around two things – it’s harming us and it’s harmful for our kids. There is a lot being said about social media being harmful for our kids; the media is having a field day. There is also a multitude of books on the topic, which seem incredibly one-sided and alarmist – here are just a few: World Without Mind: The Existential Threat of Big Tech, Zucked – Waking up to the Facebook Catastrophe, and The Coddling of the American Mind

It is said it makes you less happy. Science has picked this up and there are now a lot of (on the surface) robust studies looking at this; it is very much in vogue for scientists as well. But the science, as it tends to, is fairly inconclusive (this might be dependant on who you speak to). 

So does it make you less happy? Is it harmful? 

For an idea of how many studies have now been done on this, see the table below. It’s extensive. 

Alcott et al 2019This table is taken from an open access paper, which is important to highlight because it is most applicable to my experience over the past month. A trial of 2,743 people run at Stanford randomised people to participate in a month of not using Facebook at all compared to going about their Facebook use unchanged. They found a small change in happiness (subjective wellbeing) scores in the group randomised to abstain from Facebook, and I mean it is a small effect. These kinds of results and this entire line of science is something that gives me goosebumps; there’s something just a bit off with the whole thing. 

On the other hand, an analysis of data that definitely does involve children and teens is from a group out of Oxford. They grouped several large European cohorts – coming to an amazing 355,358 youths – and examined the reported variation in reported mental health disorder alongside other variables over time. The use of social media amongst these teens explained about 0.4% of the variation in mental health disorders over time. For your information, this is very small, about the same effect that eating potatoes has on youth mental health. 

So, the jury is definitely still out. And unfortunately, while we bark about the harms of social media in youth (of which there may actually be some, we just don’t know yet), the real issues of social media goes unnoticed. 

Generally speaking, for the underhanded dealings with what is now the world’s most valuable commodity – our own data – and for running a monopoly on what was once a Utopian dream – the internet – I think it is only fair that the general public is given some brief airtime to voice concerns. The companies that own the social media space, and some would say now own our attention, are nation states with more capital and power than the world’s hyperpowers but with about as many laws and regulations guiding their activity as you would see in a travelling circus. So complaints against social media are definitely warranted, but instead of discussing health concerns, I think we need to focus on hard facts – our civil liberties are being silently attacked and we have no say in the matter.

Why I undertook a month of no social media (why I went cold turkey)

I have recently had a month of disengaging from the social media sphere, but this hasn’t been a ‘cleanse’ or some other ethical and moral stand. This has simply been to re-calibrate and change my physical habits. For me, I have steadily (very slowly – in fact over the last 5-6 years) become more of a ‘user’; this has purely been for professional reasons. I have used these platforms to build a professional ‘persona’. And in the last year, I have gone about this like I would do with any other job. So in essence, this was a long overdue holiday. 

I realise this is not how most consider their use of social media, but for me it is my way of ‘rationalising’ my use of it. And my use is just about as addictive as anyone else’s – and I do think this is physiological. I am an addict, with a habit that interferes with my home life, my role as a father and a husband, my work life and other relationships. So, if I am providing you with my honest appraisal of why I have undertaken this, it was to: 

  • Become a better father and engage more with my son
  • Become a better husband and be present with my wife
  • Get more ‘deep work’ done, rather than surface level work (not helped by constant distractions).

Put simply, this month freed my time and attention to gain things back into my life that I had lost. And to be very clear, I really don’t think social media is the cause of the lack of attention or inability to focus; using social media is likely a symptom of the deeper motivation behind attention and focus. So why did I go cold turkey? To change my relationship with a habit, and gain back some control over other areas in my life that are priorities for me. Think ‘Dry July’ or ‘Sober October’, and just like those months, this month is about being intentional about altering something and replacing it with healthier, sustainable patterns.

Eventually, yes, I would like to see many people do the same thing. And here is why. 

Why most people, especially health professionals and researchers, should take some time out from social media.

I don’t think this should revolve around harm or negatives; that’s a problem far too complex to get dichotomous about. But for many of the individual reasons that I’ve heard from many people, I would encourage them to take some time out. This year, a group of friends and I tested the concept. Some – like me – went cold turkey, but most simply made a pledge to change their use of social media – to reduce their time, or avoid certain apps. The reasons I have heard are all quite similar. It revolves around wanting to have control over your time and being intentional about changing that. It revolves around building things into your life that you have lost or haven’t quite been able to achieve.

For health professionals and researchers, it is important to challenge your own thinking. We’ve all heard about the filter bubble issue; I think health professionals are as guilty of this as anyone else and unfortunately it may not be the best thing for our patients. Spending a lot of time on facebook or other social media platforms can be a very positive experience – you learn more from people who think like you. But therein lies the issue – our time on social media tends to be positive, because it is designed to be that way. Our human psychology makes it ultimately much more appealing to interact with people we agree with and there is no other human arena out there quite like social media to ensure we seek out and interact with people we agree with. It’s just nicer that way, who would blame us. But if we used a month of reduced use or abstinence to go out of our way and interact with those people we don’t normally interact with, we will have conversations and debates about all manner of things that may help us grow more as people and clinicians. 

Researchers, in particular, may find it a worthwhile exercise to spend a month out of the now commonplace methods of research dissemination (Twitter, Facebook) and actually talk to people about their research – ideally the consumers (the public, other researchers, or clinicians). As I spend most of my week as a researcher these days, this idea has merit in my opinion, and I hope is something that continues to develop. My hope is that more researchers and health professionals hear this plead to do more of this and join in next year.

In conclusion   

Ultimately, the reasons why social media is demonised in the popular media may be a moot point. The real reason that social media’s harms may be just really difficult to discern may be that, the human psychology is complex and people’s use (and their consideration of why they are using it) is more important than the actual act of using it. In other words, the  motivation for use may be the primary issue (Andy Prsybylski); it depends on why you are using it in the first place. 

Copy of Copy of Copy of Copy of James Steven quote (1)So, this month is more around recalibrating your motivation. This month may be about gaining some control around your habits. This month should definitely be about growth and gaining aspects to your life. For me, it has definitely made me more focused on the important things in my life – my family. Changing my relationship with social media has made me more intentional with work – I have been more productive and gotten more ‘deep work’ done. It has though been disruptive for my business and I can’t say whether it has made me happier. That’s not the point though; this month was about different things and for these reasons I think people need to join in.  I want to continue to use social media – I enjoy it and it is incredibly beneficial. This month has reminded me of the reasons why I use social media moreso than serve as a reminder of why not to use it. It is great to now be more in control over this motivation. 

So, if you’re interested in exploring this concept, please join in with my friends next year. But not because you’re expecting to be happier or become a different person. Join in to grow, join in to change, join in to gain things rather than take things away.

 

The paternalism problem in pain

The HIV/AIDS epidemic is a shining example of a successful response to a complex social problem. The creation of AIDS counsils by the members of gay, lesbian, sex worker and drug user communities who were hit hardest by the epidemic created a groundswell of community action, which gave impetus to governmental and non-governmental organisations to collaborate on sustainable solutions. The period is characterised by grassroots action, rather than a top-down approach, and a high degree of partnership between all level of stakeholders (Ref). This is a history you cannot say many other of our modern-day epidemics share.

The number of people currently living with HIV/AIDS is 37.9 million, which is dwarfed by the point prevalence of Low Back Pain (in 2015) of 540 million (Ref, Ref). Low back pain is a different and arguably much more complex problem, but it is helpful to draw parallels to successful solutions rather than proceeding blindly into the unknown. This blog will discuss the problems with the unwavering medical paternalism in managing this burden and explore the potential of a different approach.

Pain and suffering

Pain and suffering are two distinct, albeit highly related, identities. This is an accessible, very intuitive concept, even for the lay person; think of the young man who stubs a toe in comparison to the widow suffering through intractable heartbreak at the loss of her spouse – both are obviously in (different forms of) pain, but one is experiencing significantly more suffering, and it doesn’t take a rocket scientist to figure out who would benefit more from support. The ability to act in a ‘common sense’ fashion towards pain and suffering is a basic human function. It is something, however, that has wholly and solely become the role of the medical and healthcare system in recent centuries. The overt medicalisation of pain has been a fortuitous advancement in many ways, but many of these advancements have not lead to a reduction in suffering. In fact, we have had a steady increase in suffering and disability through this process; we have medicalised pain and watched by as mass suffering occurs (Ref). We have been able to produce more and more advanced ways of treating pain, but this has caused more disability, not less. Is this not evidence enough that our medical paternalism has ultimately failed the test of time in solving this massive burden of our time?

Pain happens within and amongst people; it has vital social aspects. Our medical and healthcare system tends to remove this vital human aspect of the phenomenon. What would you do to alleviate the suffering of the widow from the example above; you would talk and empathise with anyone suffering to this degree because it is a natural human response. In fact, you probably wouldn’t care to spend a fair length of time with this woman because you know, intrinsically, that the time you are giving her is valuable; it means something, it heals. We have a medical system that provides our health care providers a model that is all but void of this valuable resource. Time is in short supply; human interaction is lacking and our medical system ensures health care providers work to the rhythm of their diagnostic-curative drum. Musculoskeletal medicine has followed other disciplines down this winding biomedical road, much to the detriment of our patients. The model seems to have separated itself entirely from the most important element of pain and suffering; the social aspect. We have become very ‘sophisticated’ at treating pain, but we have failed to do anything meaningful about suffering. Our model has failed those it was designed to help.

Our model and systems are not only unfit-for-purpose, we also have a systemic under-appreciation of the social aspect of pain and suffering from translational research and policy. There is some data on what non-biomedical areas are most pressing to low back pain patients, of which specific social support is important (Ref). This is unfortunately rare and exploratory. There is a vast well of untapped potential amongst the community, who can not only shed a different perspective on the lived-experience of pain, but also be instrumental in co-designing a solution to mass suffering. We have forgotten the social aspect; the human aspect of the pain burden is an under researched, underappreciated and under-utilised component of musculoskeletal healthcare.

Ending paternalism

Paternalism is characterised by physicians making decisions for patients, in their best interest. It is characterised by doing things to patients rather than with patients. Surgery is an example of something done to patients and one that typifies ‘the end of the line’ for our biomedical model of healthcare. We have learnt that surgery for selected conditions in the areas of low back pain, knee pain and shoulder pain fails to make a meaningful impact in not only pain, but also disability and are also associated with significant risk to the patient (Ref, Ref, Ref, Ref). The evidence base investigating the true value of surgery seems mounting for selected conditions, but to be clear this is not a discussion on the merits or detractors of surgical interventions. This argument can’t be limited to surgical interventions only; although not associated with the same degree of (life-threatening) harm, other components of our modern-day healthcare system – of which conservative care is a part – is categorically poor at considering the patient perspective in any meaningful way (Ref, Ref). The approach of making decisions for the patient and removing their perspective from the process of care is what characterises paternalism and is what has characterised musculoskeletal care for centuries. Patient centred care may be a step in the right direction, but power imbalance is baked into our system of healthcare and to be clear patient centred care is still a product of this system. Is it time we take a leaf out of a successful approach to a problem – the HIV/AIDS story – and turn to our communities and our patients to determine the next best step? Instead of us determining what is best for those suffering from pain and continuing to search for a solution, should we instead ask them to become part of the solution?

While the medical system has not been doing a great job of managing this problem, what can’t be the solution is yet another false dichotomy where the medical system should absolve its responsibility to contribute positively to the pain burden. This should be a truly collaborative process, which is informed and influenced – at every level – by the patient. The patient is the consumer of healthcare but currently they largely struggle to have an informed, equitable say in the care they receive. We need a trusting and collaborative relationship to create care that is appropriate for all consumers, and this first begins with stepping down from a paternalistic position. There a few examples of consumer advisory groups bringing another perspective to care (Ref, Ref, Ref), but these are rare and don’t seem to percolate through the levels of power necessary to make a meaningful impact on policy and decision making. These groups don’t seem to have an equal stake in how care is offered, they lack a seat at the ‘C-suite’ table, maybe they are still outside in the waiting room. A medical solution to our pain burden should include these voices, not just at a tokenistic level, but to create a truly collaborative system from the bottom-up. A grass-roots solution and community voice is going to help us get to more sustainable and appropriate solutions to the pain burden; it’s not a dichotomy at all and it really can’t be moving forward.

Creating an informed consumer

An equitable and trusting collaborative approach to solving the problem is great in theory, but in practice it would be an incredibly naïve thing to rush at. Healthcare is an inherently disempowering experience and the route cause of this power (like many power imbalances) is information. To have a real conversation, we first need a system of information exchange that actually contributes to the end goal for each party. We first need a shared language and a dialogue that contributes to both parties being similarly equipped to discuss key issues. Health literacy is an important step, but like any language, just being literate may actually contribute little to the eventual success or failure of a conversation. In creating an information exchange so far, our approach to patient education has – in itself – been a rather paternalistic exercise. We have asked our patients what they need from treatment, but once again, this is predicated on a patient’s ability to adequately navigate what is a confusing and homogenous system. This is rarely the case, and what isn’t even clear is that if we have a health literate populace, will we see this transfer over in the ability to access, navigate and make sense of healthcare (Ref). A system of information exchange will need to rest on having some basic discussions about shared values and outcomes. Once again though, this probably isn’t the entire picture and we can logically assume that the entire picture wouldn’t be clear until we travel some ways down the road. It first starts with travelling down the road together, and asking some hard, but basic questions in the search of an informed consumer and an equitable partnership.

A conclusion

We may not appreciate how far we need to go to create an equitable and just consumer voice, and how deep the paternalism problem really extends in healthcare. There may be multiple layers, we need to unpack before we get to a point where we are ready to embark upon a journey together. Everyone would agree that the pain burden is unacceptable, but most of us continue to do what we’ve always done. We have a system that is categorically poor at inclusivity and acts in a top-down manner; this has not worked. The paternalism problem in pain is deeply engrained and although we may provide patient centred care, how equitable and sustainable are these episodes or solutions? It is time a real partnership is created and this begins with some hard conversations. An informed consumer is a long way off in the value-based healthcare discussion and we probably have a lot further to go than we would all care to admit.