Hype, The Life Study and trying to do too much

A while back I reviewed Helen Pearson’s, “The Life Project” in the TLS. I had previously blogged on the perils of trying to do too much and mission creep and overload.

From the original draft of the review (published version differed slightly):

Pearson is laudably clear that the story of the birth cohorts is also a study of failure; the failure of the NHS to improve the inequality of health incomes between social classes, the failure of educational reforms and re-reforms to broach the similar academic achievement gap. Indeed, the book culminates in a failure which introduces a darker tone to the story of the birth cohort studies.

Launched in January 2015, the Life Study was supposed to follow 80,000 babies born in 2015 and intended to be a birth cohort for the “Olympic Children.” It had a government patron in David Willetts, who departure from politics in May 2015 perhaps set the stage for its collapse. Overstuffed antenatal clinics and a lack of health visitors meant that the Life Study’s participants would have to self-select. The optimistic scenario has 16,000 women signing up in the first eighteen months; in the first six months, 249 women did. By October 2015, just as Pearson was completing five years of work on this book, the study had officially been abandoned.

Along with the cancellation of the National Institute for Health’s National Children’s Study in December 2014, this made it clear that birth cohorts have been victims of their own success. An understandable tendency to include as much potentially useful information as possible seemed to have created massive, and ultimately unworkable cohorts. The Life Study would have generated vast data sets: “80,000 babies, warehouses of stool samples of placentas, gigabytes of video clips, several hundred thousand questionnaires and much more” (the history of the 1982 study repeated itself, perhaps.) Then there is the recruitment issue. Pregnant women volunteering for the Life Study would “travel to special recruitment centres set up for the study and then spend two hours there, answering questions and giving their samples of urine and blood.” Perhaps the surprise is that 249 pregnant women actually did volunteer for this.

Pearson’s book illustrates how tempting mission creep is. She recounts how birth cohorts went from obscure beginnings to official neglect with perpetual funding issues to suddenly becoming a crown jewel of British research. Indeed, as I observe in the review, while relatively few countries  have emulated the NHS’ structure and funding model, very many have tried to get on the birth cohort train.

This situation of an understandable enthusiasm and sudden fascination has parallels across health services and research. It is particularly a risk in eHealth and connected health, especially as the systems are inherently complex, and there is a great deal of fashionability to using technology more effectively in healthcare. It is one of those mom-and-apple-pie things, a god term, that can shut down critical thinking at times.

Megaprojects are seductive also in an age where the politics of funding research loom large. The big, “transformative” projects can squeeze out the less ambitious, less hype-y, more human-scale approaches. It can be another version of the Big Man theory of leadership.

Whatever we do, it is made up of a collection of tiny, often implicit actions, attitudes, near-reflexes, and is embedded in some kind of system beyond ourselves that is ultimately made up of other people performing and enacting a collection of tiny, often implicit actions, attitudes, and near-reflexes.

 

Post for CCIO blog 20/02/17 – The “technodoctor” and putting stories at the heart of healthcare

Here is a post on the CCIO blog which I guess crystallises some of the thoughts I have posted here inspired by Cecil Helman. So this marks a culmination of sorts of engagement with his work.

The “technodoctor” and putting stories at the heart of healthcare

Cecil Helman was a South African-born GP who died in 2009 of motor neurone disease. He was also an anthropologist whose textbook, Culture, Health and Illness, remains a key reference and teaching text for medical anthropology. His approach to medicine, and life, is summed up in the words of one of his obituaries:

For Cecil literature and art were as important as the science of medicine. He was fascinated by people, their cultural and ethnic backgrounds, the narratives of their illnesses, their interaction with practitioners, and the role of traditional healers in many different societies. As he said, to be an effective healer, a doctor needs to ‘understand the storyteller as well as the story’.

Cecil_HelmanWhile his academic works have had a major influence on healthcare education and training, his most popular book was 2006’s Suburban Shaman a “mosaic of memories” of storytellers/patients and their stories, informed by his anthropological knowledge and approach. A posthumous sequel, An Amazing Murmur of the Heart, is a sort of sequel, in which Helman discusses the often-dehumanising process of medical education, during which the patient becomes something denatured, disconnected from their narrative. And in this book Helman identifies a new kind of doctor – the “technodoctor”:

Young Dr A, keen and intelligent, is an example of a new breed of doctor – the ones I call ‘techno-doctors’. He is an avid computer fan, as well as a physician. He likes nothing better than to sit in front of his computer screen, hour after hour, peering at it through his horn-rimmed spectacles, tap-tapping away at his keyboard. It’s a magic machine, for it contains within itself its own small, finite, rectangular world, a brightly coloured abstract landscape of signs and symbols. It seems to be a world that is much easier for Dr A to understand , and much easier for him to control, than the real world –  one largely without ambiguity and emotion.

Helman further identifies that this attitude marks a further step along the road of reductionism and dehumanising in medical care:

Like many other doctors of his generation – though fortunately still only a minority – Dr A prefers to see people and their diseases mainly as digital data, which can be stored, analysed, and then, if necessary, transmitted – whether by internet, telephone or radio – from one computer to another. He is one of those helping to create a new type of patient, and a new type of patient’s body – one much less human and tangible than those cared for by his medical predecessors. It is one stage further than reducing the body down to a damaged heart valve, an enlarged spleen or a diseased pair of lungs. For this ‘post-human’ body is one that exists mainly in an abstract, immaterial form. It is a body that has become pure information.

I was reminded by Robert Wachter’s speech at the 2016 CCIO Network Summer School in Leeds, on unintended consequences in health IT. He gave the example of hospitals where doctors are no longer to be found on the wards interacting with patients and other staff, but in a room full of doctors on computers, interacting with the EHR. The most stark illustration he used, however, was a child’s picture of a visit to the doctor, showing the doctor’s back turned to the child and her mother, tap-tapping away at the screen.

“A body that has become pure information” is how Helman describes the end process of the dehumanisation he decries. While I think the “technodoctor” is something of a straw man, Helman is certainly pointing to a genuine risk. “An Amazing Murmur of the Heart” is full of wisdom about the importance of connection, of physical touch, of attending to the story the patient brings, and the meaning of their symptoms for them. It would be a pity if this kind of rich, truly humanistic approach to medicine is somehow placed in opposition to the world of the “technodoctor.”

One way of avoiding the development of this false dichotomy into something tangible lies in Helman’s emphasis on the need to “understand the storyteller as well as the story.” What Helman doesn’t discuss in these passages is how paper-based information systems in healthcare can obscure the story and the storyteller in a welter of disjointed confusion. My own experience of paper notes is all too often wading through pages of confusing, if not illegible, notes, searching for something typewritten or printed. In this circumstance, the story the person is bringing to the encounter is utterly lost.

Initiatives like the EHR Personas allow for the conscientious, judicious use of narratives in planning and executing a major health IT change, one that could radically alter not only how healthcare is delivered but also how the personal story that is at the heart of all this activity is told.

Helman is, from the grave, issuing a warning, however, about what could go wrong. It is the same warning as that Bob Wachter gives with the child’s picture. It is fortunate that “narrative medicine” has become an academic subject in its own right, although perhaps this development indicates that something has been lost. In planning health IT interventions, we must ensure that they allow the story to be told and the storyteller to be heard. Let us focus on ensuring that the human stories that are the real stuff of every single clinical encounter are never lost, and that we turn our faces not to the screen but to those human stories.

Once again, it isn’t about the tech

From MobiHealthNews:

West Virginia hospital system sees readmission reductions from patient education initiative
A telehealth initiative at Charleston Area Medical Center led to reduced readmission rates for several chronic conditions, the health system reported today.

What led to the reductions wasn’t the advent of video consultations with specialists or sophisticated biometric sensor monitoring, but health information for patients and workflow integration for hospital staff via SmarTigr, TeleHealth Services’s interactive patient education and engagement platform that offers videos designed to educate patients about their care and medication

Technology is an enabler of improved patient self-management and improved clinician performance – not an end in itself.

More on the health education elements of this project:

As only 12 percent of US adults have the proficient health literacy required to self-manage their health, the four-hospital West Virginia system launched the initiative in 2015 to see what they could do to improve that statistic. With SmarTigr, they developed condition-specific curriculums – which are available in multiple languages – and then “prescribed” the videos, which are integrated into smart TVs, hospital software platforms and mobile applications. Patients then complete quizzes, and the hospital staff review reports of patient compliance and comprehension, and all measurements become part of the patient’s medical record.

“Self-management” can be a godterm, shutting down debate, but the sad reality that health literacy (and, I would argue, overall literacy) is such in the general population that it will remain a chimera.

Finally, this project involved frontline clinicians via a mechanism I hadn’t heard of before – the “nurse navigator”

Lilly developed a standard educational approach by working with registered nurse Beverly Thornton, CAMC’s Health Education and Research Institute education director, as well as two “nurse navigators,” who work directly with the front-line nurses. They developed disease-specific video prescriptions for CHF and COPD that give a detailed list of educational content videos patients are to watch before they are discharged, followed by quizzes.

“actual clinic services with real doctors”

Again, from MobiHealthNews:

A new kind of doctor’s office opened in San Francisco this week: Forward, a membership-based healthcare startup founded by former Googler Adrian Aoun that infuses a brick-and-mortar office with data-driven technology and artificial intelligence.

For $149 per month, Forward members can come to the flagship office that features six examination rooms – equipped with interactive personalized displays – and doctors from some of the Bay Area’s top medical systems. Members are given wearable sensors that work with Forward’s proprietary AI for proactive monitoring that can alert members and their doctors of any abnormalities as well as capture, store and analyze data to develop personalized treatment plans. Members also have 24-7 mobile access to their data, rounding out what Aoun believes is a new type of preventative care.

What is interesting about this piece is that there are various other start-ups whose vision is not based on telemedicine or on “empowering consumers”, but on what is at its core the traditional surgery office except with much slicker tech. It is also interesting that Forward’s approach is based on a personal experience:

The impetus for Forward came from a personal experience of Aoun’s. When one of his close relatives had a heart attack, he found himself sitting in the ICU and realizing healthcare wasn’t quite what he thought it was. Seeing doctors having to obtain health records from multiple sources and wait days or weeks for test results and suffering from all-around communication breakdowns within their health system, he was inspired to create an alternative model – one focused on prevention, efficiency and connected tools to create a increasingly smart healthcare plans based on each individual’s needs and goals.

I took the title of this post from what I found a rather amusing aside in a later paragraph:

It also isn’t the first company to offer a hybrid of physical and digital services. In September 2016, startup Carbon Health opened its first clinic, also in San Francisco, that offers actual clinic services with real doctors

“actual clinic services with real doctors”! – sounds truly revolutionary – and quite a difference from the techno-utopian slant of the Financial Times piece I blogged about earlier in the week. At times readers may detect a certain weariness with the hype that surrounds digital health, the overuse of “revolutionary” and “transformative” and so on, the goes-without-saying presumption that healthcare is bloated and inefficient while tech is gleaming and slick and frictionless.  This is far from saying that healthcare doesn’t need change, and can’t learn from other fields – I look forward to hearing more about Forward.

Financial Times: How smartphones are transforming healthcare

This piece from last weekend’s FT magazine naturally caught my eye. It is rather techno-trumphalist narrative, with a few paragraphs of caveats on data privacy and lack of regulation in this area.However, the first and last quotations are from the CEO of Babylon an “artificially intelligent medical adviser” – the last words being:

But although we will continue to seek out physicians, it will not necessarily be because of their superior clinical skills. “If what you need is to solve a specific clinical problem, a diagnosis, then we can diagnose you better, faster, cheaper than a human doctor can,” Parsa says, with a wry smile. “Five years from now, technologically I do not believe you will have any need to see a human doctor for diagnosis… there is no scientific reason”

He would say that, wouldn’t he?

I’ve written before on the (much superior) Nature piece on “The Wild West of Health” care and have dashed off a few lines to the FT magazine on the lack of mention of the importance of clinical engagement. The piece is worth reading however, my allergy to mention of “transforming” and “revolutionising” healthcare

 

#flicishere, the #IoT and invisible health IT

#flicishere, the #IoT and invisible health IT

 

#Hereisflic! Flic is a wireless smart button “for your smartphone, smarthome and smartlife” as the website puts it. While I am rather deficient in the smarthome and smartlife departments, I do have a smartphone and had an enjoyable evening playing around with Flics. A Flic is a little button – the pack above contained 4:

 

Each is a pleasingly solid little artefact. Put very simply, there are three ways of pressing the Flic – single click, double click, and hold. Each of these can be linked with an action of your smartphone (or smarthome devices/system) or using If This, Then That a whole range of other apps and devices:

Playing around with Flic was great fun and had that you-can-do-that? factor which I don’t get all that much with technology any more. Indeed, messing around with Flic got me thinking of grandiose, utopian vision of healthcare (I suspect some of my aversion to grandiose, utopian visions of technology and healthcare is pure reaction formation. And obviously my grandiose, utopian vision is better than everyone else’s grandiose, utopian vision) – which to recap was:

So my vision for the future of healthcare is sitting in a room talking to someone, without a table or a barrier between us, with the appropriate information about that person in front of me (but not a bulky set of notes, or desktop computer, or distracting handheld device) in whatever form is more convivial to communication between us. We discuss whatever it is that has that person with me on that day, what they want from the interaction, what they want in the long term as well as the short term. In conversation we agree on a plan, if a “plan” is what emerges (perhaps, after all, the plan will be no plan) – perhaps referral onto others, perhaps certain investigations, perhaps changes to treatment. At the end, I am presented with a summary of this interaction and of the plan, prepared by a sufficiently advanced technology invisible during the interaction, which myself and the other person can agree on. And if so, the referrals happen, the investigations are ordered, and all the other things that now involve filling out carbon-copy forms and in one healthcare future will involve clicking through drop-down menus, just happen.

That’s it.

I suppose putting flesh on those bones would involve a speech to text system that would convert the clinical encounter into a summary form “for the notes” (and for a summary letter for the person themselves, and the GP letter, and for the referrals) – perhaps some key phrases would be linked with certain formulations and phrases (to a great degree medical notes, even in psychiatry, are rather formulaic) – with of course capacity or editing and adding in free text. While clicking Flic-type devices during a consultation would be distracting, a set of different Flic type buttons with different clinical actions – ie contact psychologist to request a discussion on this patient, make provisional referral to dietitian, text community nurse to arrange a phone call – would certainly smoothen things much more than the carbon-copy world I currently live in.

When I wrote the above vision I was not familiar with the illustration Bob Wachter uses in his talks of a young girls picture of her trip to the doctor:

childspic

Turned away, tapping at a keyboard, disengaged from the family. That is what technology should not facilitate. Perhaps the internet of things could be a way of realising my particular grandiose vision of invisible Health IT.

“The Wild West of Health” care: mental health Apps, evidence, and clinical credibility

“The Wild West of Health” care: mental health Apps, evidence, and clinical credibility

We read and hear much about the promise of mobile health. Crucial in the acceptance of mobile health by the clinical community is clinical credibility. And now, clinical credibility is synonymous with evidence, and just “evidence” but reliable, solid evidence. I’ve blogged before about studies of the quality of mental health smartphone apps. I missed this piece from Nature which, slightly predictably, is titled “Mental Health: There’s an app for that.” (isn’t “there’s an App for that a little 2011-ish though?) It begins by surveying the immense range of mental health-focused apps out there:

 

Type ‘depression’ into the Apple App Store and a list of at least a hundred programs will pop up on the screen. There are apps that diagnose depression (Depression Test), track moods (Optimism) and help people to “think more positive” (Affirmations!). There’s Depression Cure Hypnosis (“The #1 Depression Cure Hypnosis App in the App Store”), Gratitude Journal (“the easiest and most effective way to rewire your brain in just five minutes a day”), and dozens more. And that’s just for depression. There are apps pitched at people struggling with anxiety, schizophrenia, post-traumatic stress disorder (PTSD), eating disorders and addiction.

The article also has a snazzy  infographic illustrating both the lack of mental health services and the size of the market:

naturegraph

The meat of the article, however, focuses on the lack of evidence and evaluation of these apps. There is a cultural narrative which states that Technology = Good and Efficient, Healthcare = Bad and Broken and which can give the invocation of Tech the status of a godterm, pre-empting critical thought. The Nature piece, however, starkly illustrates the evidence gap:

But the technology is moving a lot faster than the science. Although there is some evidence that empirically based, well-designed mental-health apps can improve outcomes for patients, the vast majority remain unstudied. They may or may not be effective, and some may even be harmful. Scientists and health officials are now beginning to investigate their potential benefits and pitfalls more thoroughly, but there is still a lot left to learn and little guidance for consumers.

“If you type in ‘depression’, its hard to know if the apps that you get back are high quality, if they work, if they’re even safe to use,” says John Torous, a psychiatrist at Harvard Medical School in Boston, Massachusetts, who chairs the American Psychiatric Association’s Smartphone App Evaluation Task Force. “Right now it almost feels like the Wild West of health care.”

There isn’t an absolute lack of evidence, but there are issues with  much of the evidence that is out there:

Much of the research has been limited to pilot studies, and randomized trials tend to be small and unreplicated. Many studies have been conducted by the apps’ own developers, rather than by independent researchers. Placebo-controlled trials are rare, raising the possibility that a ‘digital placebo effect’ may explain some of the positive outcomes that researchers have documented, says Torous. “We know that people have very strong relationships with their smartphones,” and receiving messages and advice through a familiar, personal device may be enough to make some people feel better, he explains.

And even saying that (and, in passing, I would note that in branch of medical practice, a placebo effect is something to be harnessed, not denigrated – but in evaluation and study, rigorously minimising it is crucial) there is a considerable lack of evidence:

But the bare fact is that most apps haven’t been tested at all. A 2013 review8 identified more than 1,500 depression-related apps in commercial app stores but just 32 published research papers on the subject. In another study published that year9, Australian researchers applied even more stringent criteria, searching the scientific literature for papers that assessed how commercially available apps affected mental-health symptoms or disorders. They found eight papers on five different apps.

The same year, the NHS launched a library of “safe and trusted” health apps that included 14 devoted to treating depression or anxiety. But when two researchers took a close look at these apps last year, they found that only 4 of the 14 provided any evidence to support their claims10. Simon Leigh, a health economist at Lifecode Solutions in Liverpool, UK, who conducted the analysis, says he wasn’t shocked by the finding because efficacy research is costly and may mean that app developers have less to spend on marketing their products.

Like any healthcare intervention, an App can have adverse effects:

When a team of Australian researchers reviewed 82 commercially available smartphone apps for people with bipolar disorder12, they found that some presented information that was “critically wrong”. One, called iBipolar, advised people in the middle of a manic episode to drink hard liquor to help them to sleep, and another, called What is Biopolar Disorder, suggested that bipolar disorder could be contagious. Neither app seems to be available any more.

And even more fundamentally, in some situations the App concept itself and the close relationship with gamification can backfire:

Even well-intentioned apps can produce unpredictable outcomes. Take Promillekoll, a smartphone app created by Sweden’s government-owned liquor retailer, designed to help curb risky drinking. While out at a pub or a party, users enter each drink they consume and the app spits out an approximate blood-alcohol concentration.

When Swedish researchers tested the app on college students, they found that men who were randomly assigned to use the app ended up drinking more frequently than before, although their total alcohol consumption did not increase. “We can only speculate that app users may have felt more confident that they could rely on the app to reduce negative effects of drinking and therefore felt able to drink more often,” the researchers wrote in their 2014 paper13.

It’s also possible, the scientists say, that the app spurred male students to turn drinking into a game. “I think that these apps are kind of playthings,” says Anne Berman, a clinical psychologist at the Karolinska Institute in Stockholm and one of the study’s authors. There are other risks too. In early trials of ClinTouch, researchers found that the symptom-monitoring app actually exacerbated symptoms for a small number of patients with psychotic disorders, says John Ainsworth at the University of Manchester, who helped to develop the app. “We need to very carefully manage the initial phases of somebody using this kind of technology and make sure they’re well monitored,” he says.

I am very glad to read that one of the mHealth apps which is a model of evidence based practice is one that I have both used and recommended myself – Sleepio:

sleepio-logo

One digital health company that has earned praise from experts is Big Health, co-founded by Colin Espie, a sleep scientist at the University of Oxford, UK, and entrepreneur Peter Hames. The London-based company’s first product is Sleepio, a digital treatment for insomnia that can be accessed online or as a smartphone app. The app teaches users a variety of evidence-based strategies for tackling insomnia, including techniques for managing anxious and intrusive thoughts, boosting relaxation, and establishing a sleep-friendly environment and routine.

Before putting Sleepio to the test, Espie insisted on creating a placebo version of the app, which had the same look and feel as the real app, but led users through a set of sham visualization exercises with no known clinical benefits. In a randomized trial, published in 2012, Espie and his colleagues found that insomniacs using Sleepio reported greater gains in sleep efficiency — the percentage of time someone is asleep, out of the total time he or she spends in bed — and slightly larger improvements in daytime functioning than those using the placebo app15. In a follow-up 2014 paper16, they reported that Sleepio also reduced the racing, intrusive thoughts that can often interfere with sleep.

The Sleepio team is currently recruiting participants for a large, international trial and has provided vouchers for the app to several groups of independent researchers so that patients who enrol in their studies can access Sleepio for free.

sleepioprog

This is extremely heartening – and as stated above, clinical credibility is key in the success of any eHealth / mHealth approach. And what does clinical credibility really mean? That something works, and works well.