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.

 

“Happy Organisations and Happy Workers” – blog post by Maria Quinlan

On the ARCH (Applied Research in Connected Health) website, research lead Dr Maria Quinlan  has a blog post entitled
“Happy Organisations and Happy Workers – a key factor in implementing digital health”

The whole is worth a read. Of course, having a happy organisation made up of happy workers is inherently important of itself, as well as from the point of view of implementing digital health. As Dr Quinlan writes in the first paragraph:

To paraphrase Tolstoy, “all happy organisations are alike; each unhappy organisation is unhappy in its own way.” The ability for healthcare organisations to innovate is a fundamental requirement for adopting and sustainably scaling digital health solutions.  If an organisation is unhappy, for example if it is failing to communicate openly and honestly, if staff feel overworked and that their opinion isn’t valued, it stands to reason that it will have trouble innovating and handling major complex transitions.

Reading this, I am struck by how important it is to make time in a day with an accumulation of pressing demands for reflection:

 

What these factors combine to achieve is happy, engaged workers – and happy workers are more effective, compassionate, and less likely to suffer burnout [2]. Clear objectives, praise, a sense that your voice matters – these can seem like fluffy ‘soft’ concepts and yet they are found over and over to be central to providing the right context within which new digital health innovations can flourish. Classic ‘high involvement’ management techniques – for example empowering team members to make decisions and not punishing them for every misstep are found to be key [1].  As Don Berwick of the Institute of Healthcare Improvement (IHI) says, people who feel joy in work are “not scared of data”, rather “joy is a resource for excellence” [3]

Managing what Sigal Barsade, Professor of Management at Wharton calls the ‘emotional’ culture of an organisation is a very important concept – especially in the healthcare environment which expects so much of staff [4]. Healthcare workers face pressures which many of us working in other fields can’t really comprehend, a recent systematic review found that clinicians have higher rates of suicidal ideation than the general population, with a high prevalence of burnout, psychiatric morbidity and depression linked to excessive workload [5].  Attempting to introduce innovative new ways of working within such constrained environments can be challenging to say the least. Exhausted workers, those with little time in their day for reflection, or those who work in organisations which fear failure are less likely to innovate [6].

Much of the rhetoric around healthcare innovation tends to be messianic in tone. A gap between this rhetoric and the messy, pressured reality of healthcare can diminish the credibility of innovators.

The concept of “adaptive reserve” is an important one, especially in the context of reforms and innovations being introduced into already pressured environments:

Drawing from their work researching healthcare organisations ability to handle complex transitions in the US, Jaen et al (2010) developed a 23-item scale measure for what they term ‘adaptive reserve’. Adaptive reserve is an internal capability for change which includes being agile; capable of continuous learning; and being adept at self-assessment, reflection and improvisation. The Adaptive Reserve questionnaire asks staff to rate their organisation according to a variety of statements which include statements such as; ‘we regularly take time to consider ways to improve how we do things’ and ‘this organisation is a place of joy and hope’.

Overall, this a fascinating blog post on an issue which is close to my heart. I intend to post some more on this topic over the next while.

 

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.

#EHRPersonas – blogpost on CCIO site

Here is a post on the CCIO website on the recent EHR Personas workshop organised by eHealthIreland:

 

The HSE’s Chief Information Officer and the Clinical Strategy and Programmes Directorate are currently developing ‘Personas’ and ‘Scenarios’ to support the introduction of Electronic Health Records (EHR). As part of this project, a series of workshops for those working in the health services and also patients/service users was held on January 31stand February 1st.

One of the challenges of developing an EHR is capturing the diversity of needs it must address. Even a seemingly straightforward clinical setting will involve multiple interactions with multiple information sources. Contemporary mental health practice is focused on the community, but at the same time acute psychiatric units now co-located in acute general hospitals, and mental health issues very commonly arise simultaneously with general health needs, there is considerable overlap with the hospital system. Mental health services increasingly integrate multiple models of mental health, not only a purely medical one; while simultaneously safe psychiatric practice requires access to laboratory and imaging systems to the same degree as other medical disciplines.

Mental health services are therefore interacting with hugely complex information networks. Capturing all this complexity in a useful form is a considerable challenge. Personas and scenarios allow the expertise of patients and clinicians to be synthesised and for assumptions about what an EHR is for and can do to be challenged.

As a participant in a service provider workshop, I naturally enough was grouped with other mental health professionals. Most of our team were mental health nurses – in the community, delivering therapies and liaising with general hospital staff. We also had representation from pharmacy and administration, and myself as a psychiatrist. Other workshops include the diverse range of health professionals that make up a multidisciplinary community mental health team.
The service user persona was Tom, a 19 year old student from Mayo who has recently started university in Dublin. Tom’s friends notice he is more withdrawn and generally “not himself” and are sufficiently concerned to persuade him to attend the college health services where he sees a GP. There a physical examination, blood work and a urine drug screen are performed. A referral is made via HealthLink to a community mental health team. However a couple of nights later Tom becomes much more distressed and tells his friends he needs to escape from black-coated men following him everywhere. Tom’s friends bring him to the local Emergency Department where he is medically assessed and referred for a psychiatric opinion.

The scenario attempted to address how an EHR would address multiple issues that effect current mental health practice – from communication between primary care and mental health services to the avoiding duplication of investigations and of questioning.

One of the most persistent items of feedback from mental health service users is the initial contact with services involving much repetition of the same questions – often including biographical and demographic data – at a time of distress and anxiety.There is also frequently repetition of investigations and physical examinations, even when these have already been performed.

In our scenario, the situation developed with Tom deciding to move back home to Mayo and re-presenting to his local GP. This brought up a whole range of issues around the interaction between primary care, student health services, the mental health services across different catchment areas and regions. In our group, we discussed how the issue of access to the National Shared Record could play out with various permutations of consent from Tom, and the impact this could have on his care.

The second persona focused on a community mental health nurse, Ann, on her daily routine of calling to service users across a geographically dispersed mixed urban/rural area, engaging with clients at various stages of recovery, and administering treatments such as depot injections of antipsychotic medication and centrally dispensed medication such as clozapine. In our scenario we introduced features typical of remote working in an environment where mobile connections are not always reliable. Features such as the ability to work offline and upload updated records when back online were discussed.

In both service user and clinician scenarios, it became clear that if technology is to improve how health systems work for the benefit of the patient, it is in many ways by becoming invisible, by making the clinical interaction frictionless and about the person at its heart. The need for repeated, intrusive and unnecessary investigations – and questioning – could be reduced, allowing therapeutic interactions to take place unhindered. Both personas, and both scenarios, reinforced for me that the health system must have the service user – such as Tom – at its heart, and the delivery of healthcare is ultimately by people – such as Ann.

At its best, technology can enable this ultimately deeply personal interaction, rather than acting as another barrier, another “system” to be navigated.

2007: “Lifespan extension and the growing number of elderly people, once considered as catastrophic, are now viewed as an indisputable progress.”

Continuing my rather self-indulgent nostalgia trip, here is a blog post from 2007 (a decade ago!) on an then-upcoming conference. Note that I was unable to embed links!:

 

A rather melodramatic way of putting it – but that’s what the organisers of 19th World Congress of Gerontology and Geriatrics – http://www.gerontologyparis2009.com/site/view8b.php?id=119 They have two years, almost, to further encourage the “growing consensus” (and presumably take care of anyone who would dispute the progress that is lifespan extension)

“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.

“evolved strategy”: Online CBT provider Joyable lays off 20, shifts focus from direct-to-consumer to employers, providers

From MobiHealthNews:

“We let a number of talented people and friends go this week,” CEO Peter Shalek said in an emailed statement. “We did this in order to refocus our efforts on partnering with employers, insurers, and providers to increase access to evidence-based mental health care and to reduce costs. We are positioned financially to pursue this new strategy over the next several years. We’ve built a product known for having the best engagement and outcomes of any mental health-focused digital therapeutic, and we believe that our evolved strategy will allow us to reach and help the most people.”

In an interview, Shalek clarified that Joyable’s direct-to-consumer offering, an online cognitive behavioral therapy (CBT) and coaching program for social anxiety, isn’t going away completely: people currently using it will still be able to use it and new sign-ups will still be supported. But the company won’t put any more resources into developing or marketing the direct-to-consumer offering, and most of the staff involved in marketing and support for that product specifically were let go.

Shalek said that the company had always planned to go in this direction anyway and that, while they reached a lot of people, they recognized that the best way to move the needle meaningfully on social anxiety would be to help more people, which the company could accomplish by targeting populations that don’t need to pay for the service directly (the company charges individuals $23 per week for a 12-week course after a seven-day free trial).

With Joyable’s platform, first users are paired with a coach who has been trained in CBT techniques. Before starting the program, users are invited to speak to the coach for 30 minutes on a phone call about how social anxiety affects them and what they want to get out of the program. After that, the program helps consumers identify and understand their social anxiety triggers. Users must complete activities such as challenging anxious thoughts with evidence and developing alternative thoughts that are more helpful. Each activity takes around 10 minutes to complete.

From there, Joyable teaches users techniques to reduce their anxiety by putting themselves in anxious situations and working on applying the skills they learned. The coach supports the user throughout the program through text and email, and the user can also reach out for help whenever they want. The program is available online, and can also be accessed from smartphones and tablets.

One does wonder how much of Shalek’s statement on “evolved strategy” and the assurance “we always intended to go this direction anyway” masks a certain realisation that many online mental health providers are coming to: that, for all the hype and optimistic rhetoric about empowering “consumers”, ultimately engaging providers is a necessity for these technologies to actually reach the potential users who could benefit most.