From Paula and Andrew’s Travels – a visit to Burghley House which is full of entertaining detail , especially this:
From Paula and Andrew’s Travels – a visit to Burghley House which is full of entertaining detail , especially this:
I will be speaking as a living book in this:
The College is delighted to announce our 4th annual event in partnership with See Change for Green Ribbon Month – A Living Library
When it comes to mental health everyone has a story to share and we find comfort, empathy and compassion in shared experiences. Social contact is known to be one of the most effective ways of reducing mental health related stigma and discrimination so with this in mind, and to mark Green Ribbon month, the College is delighted to announce our ‘Living Library’ event, a library come to life in the outdoors!
At our library the ‘books’ are a little different, they are people; people with different experiences and stories to tell related to mental health including those who have experienced mental health issues and illness, their family members and carers, and the psychiatrists who help them towards the path of recovery. Mental health stigma too often creates discrimination and misunderstanding so we want to give members of the public the opportunity to connect and engage with psychiatrists and people they may not normally have the occasion to speak with.
The aim is to better understand the lived experiences of others who have experienced or facilitated recovery from mental illness and distress and to challenge their own assumptions, prejudices and stereotypes. We invite you to ‘read’ the human books through conversation and gain understanding of their experiences.
For Green Ribbon Month Let’s End the Stigma by not judging a book by its cover and develop a greater understanding of each other’s stories.
Thursday 31st May 2018
12.30pm – 2.30pm
St Stephens Green, Dublin
This is a Free Event, but space is limited. Book your place here.
Dr Séamus Mac Suibhne, psychiatrist and member of the Health Service Executive research technology team says that while the task of vetting all apps for their clinical usefulness is virtually impossible, it would be helpful if the Cochrane Collaboration [a global independent network of researchers] had a specific e-health element so it could partner with internet companies to give a meaningful rubber stamp to specific mental health apps.
“There is potential for the use of mental health apps to engage people with diagnosed conditions – particularly younger patients who might stop going to their outpatients appointments,” says Dr Mac Suibhne. However, he cautions their use as a replacement to therapy. “A lot of apps claim to use a psychotherapeutic approach but psychotherapy is about a human encounter and an app can’t replace that,” he says.
Here are some other posts from this blog on these issues:
From Mike Caufield, a piece that reminds me of the adage Garbage In, Garbage Out:
For many years, the underlying thesis of the tech world has been that there is too much information and therefore we need technology to surface the best information. In the mid 2000s, that technology was pitched as Web 2.0. Nowadays, the solution is supposedly AI.
I’m increasingly convinced, however, that our problem is not information overload but information underload. We suffer not because there is just too much good information out there to process, but because most information out there is low quality slapdash takes on low quality research, endlessly pinging around the spin-o-sphere.
Take, for instance, the latest news on Watson. Watson, you might remember, was IBM’s former AI-based Jeopardy winner that was going to go from “Who is David McCullough?” to curing cancer.
So how has this worked out? Four years later, Watson has yet to treat a patient. It’s hit a roadblock with some changes in backend records systems. And most importantly, it can’t figure out how to treat cancer because we don’t currently have enough good information on how to treat cancer:
“IBM spun a story about how Watson could improve cancer treatment that was superficially plausible – there are thousands of research papers published every year and no doctor can read them all,” said David Howard, a faculty member in the Department of Health Policy and Management at Emory University, via email. “However, the problem is not that there is too much information, but rather there is too little. Only a handful of published articles are high-quality, randomized trials. In many cases, oncologists have to choose between drugs that have never been directly compared in a randomized trial.”
This is not just the case with cancer, of course. You’ve heard about the reproducibility crisis, right? Most published research findings are false. And they are false for a number of reasons, but primary reasons include that there are no incentives for researchers to check the research, that data is not shared, and that publications aren’t particularly interested in publishing boring findings. The push to commercialize university research has also corrupted expertise, putting a thumb on the scale for anything universities can license or monetize.
In other words, there’s not enough information out there, and what’s out there is generally worse than it should be.
You can find this pattern in less dramatic areas as well — in fact, almost any place that you’re told big data and analytics will save us. Take Netflix as an example. Endless thinkpieces have been written about the Netflix matching algorithm, but for many years that algorithm could only match you with the equivalent of the films in the Walmart bargain bin, because Netflix had a matching algorithm but nothing worth watching. (Are you starting to see the pattern here?)
In this case at least, the story has a happy ending. Since Netflix is a business and needs to survive, they decided not to pour the majority of their money into newer algorithms to better match people with the version of Big Momma’s House they would hate the least. Instead, they poured their money into making and obtaining things people actually wanted to watch, and as a result Netflix is actually useful now. But if you stick with Netflix or Amazon Prime today it’s more likely because you are hooked on something they created than that you are sold on the strength of their recommendation engine.
Let’s belabor the point: let’s talk about Big Data in education. It’s easy to pick on MOOCs, but remember that the big value proposition of MOOCs was that with millions of students we would finally spot patterns that would allow us to supercharge learning. Recommendation engines would parse these patterns, and… well, what? Do we have a bunch of superb educational content just waiting in the wings that I don’t know about? Do we even have decent educational research that can conclusively direct people to solutions? If the world of cancer research is compromised, the world of educational research is a control group wasteland.
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’.
While 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.
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.