We should look to automation to relieve the current pressures on healthcare

Image by TheeErin (Flickr CC BY-NC-ND 2.0), who writes: “Working on a national cancer research project. This is the usual volume of mail that comes in two-days time.”

In many sectors, automation is seen as a threat due to the potential for job losses. By contrast, automation is seen as an opportunity in healthcare, as a way to address pressures including staff shortages, increasing demand and workloads, reduced budget, skills shortages, and decreased consultation times. Automation may address these pressures in primary care, while also reconfiguring the work of staff roles and changing the patient-doctor relationship.

In the interview below, Matt Willis discusses a project, funded by The Health Foundation, which looks at opportunities and challenges to automation in NHS England general practice services. While the main goal of the project is to classify work tasks and then calculate the probability that each task will be automated, Matt is currently conducting ethnographic fieldwork in primary care sites to understand the work practices of surgery staff and clinicians.

Since the first automated pill counting machine was introduced in 1970 the role of the pharmacist has expanded to where they now perform more patient consultations, consult with primary care physicians, and require greater technical skill (including a Pharm.D degree). While this provides one clear way in which a medical profession has responded to automation, the research team is now looking at how automation will reconfigure other professions in primary care, and how it will shape its technical and digital infrastructures.

We caught up with Matt Willis to explore the implications of automation in primary care.

Ed.: One finding from an analysis by Frey and Osborne is that most healthcare occupations (that involve things like social intelligence, caring etc.) show a remarkably low probability for computerisation. But what sorts of things could be automated, despite that?

Matt: While providing care is the most important work that happens in primary care, there are many tasks that support that care. Many of those tasks are highly structured and repetitive, ideal things we can automate. There is an incredible amount of what I call “letter work” that occurs in primary care. It’s tasks like responding to requests for information from secondary care, an information request from a medical supplier, processing a trusted assessment, and so on.

There is also generating the letters that are sent to other parts of the NHS — and letters are also triaged at the beginning of each day depending on the urgency of the request. Medical coding is another task that can be automated as well as medication orders and renewal. All of these tasks require someone working with paper or digital text documents and gathering information according to a set of criteria. Often surgeries are overwhelmed with paperwork, so automation is a potential way to make a dent in the way information is processed.

Ed.: I suppose that the increasing digitisation of sensors and data capture (e.g. digital thermometers) and patient records actually helps in this: i.e. automation sounds like the obvious next step in an increasingly digital environment? But is it really as simple as that?

Matt: Well, it’s never as simple as you think it’s going to be. The commonality of data originating in a digital format usually does make data easier to work with, manipulate, analyze, and make actionable. Even when information is entirely digital there can be barriers of interoperability between systems. Automation could even be automating the use of data from one system to the next. There are also social and policy barriers to the use of digital data for automation. Think back to the recent care.data debacle that was supposed to centralize much of the NHS data from disparate silos.

Ed.: So will automation of these tasks be driven by government / within the NHS, or by industry / the market? i.e. is there already a market for automating aspects of healthcare?

Matt: Oh yes, I think it will be a variety of those forces you mention. There is already partial automation in many little ways all over NHS. Automation of messages and notifications, blood pressure cuffs, and other medical devices. Automation is not entirely new to healthcare. The pharmacist is an exemplar health profession to look at if we want to see how automation has changed the tasks of a profession for decades. Many of the electronic health record providers in the UK have different workflow automation features or let clinicians develop workflow efficiency protocols that may automate things in specific ways.

Ed.: You say that one of the bottlenecks to automating healthcare is lack of detailed knowledge of the sorts of tasks that could actually be automated. Is this what you’re working on now?

Matt: Absolutely. The data from labour statistics is self-reported and many of the occupations were lumped together meaning all receptionists in different sectors are just listed under receptionist. One early finding I have that I have been thinking about is how a receptionist in the healthcare sector is different in their information work than a receptionist’s counterpart in another sector. I see this with occupations across health, that there are unique features that differentiate health occupations from similar occupations. This begs the need to tease out those details in the data.

Additionally, we need to understand the use of technologies in primary care and what tasks those technologies perform. One of the most important links I am trying to understand is that between the tasks of people and the tasks of technologies. I am working on not only understanding the opportunities and challenges of automation in primary care but also what are the precursors that exist that may support the implementation of automation.

Ed.: When I started in journals publishing I went to the post room every day to mail out hardcopy proofs to authors. Now everything I do is electronic. I’m not really aware of when the shift happened, or what I do with the time freed up (blog, I suppose..). Do you think it will be similarly difficult in healthcare to pin-point a moment when “things got automated”?

Matt: Well, often times with technology and the change of social practices it’s rarely something that happens overnight. You probably started to gradually send out less and less paper manuscripts over a period of time. It’s the frog sitting in a pot where the heat is slowly turned up. There is a theory that technological change comes in swarm patterns — meaning it’s not one technological change that upends everything, but the advent of numerous technologies that start to create big change.

For example, one of the many reasons that the application of automation technologies is increasing is the swarming of prior technologies like “big data” sets, advances in machine vision, machine learning, machine pattern recognition, mobile robotics, the proliferation of sensors, and further development of autonomous technologies. These kinds of things drive big advances forward.

Ed.: I don’t know if people in the publishing house I worked in lost their jobs when things like post rooms and tea trolleys got replaced by email and coffee machines — or were simply moved to different types of jobs. Do you think people will “lose their jobs“ as automation spreads through the health sector, or will it just drive a shift to people doing something else instead?

Matt: One of the justifications in the project is that in many sectors automation is seen as a threat, however, automation is seen as an opportunity in healthcare. This is in great part due to the current state of the NHS and that the smart and appropriate application of automation technologies can be a force multiplier, particularly in primary care.

I see it as not that people will be put out of jobs, but that you’ll be less likely to have to work 12 hours when you should be working 8 and to not have a pile of documents stacking up that you are three months behind in processing. The demand for healthcare is increasing, the population is aging, and people live longer. One of the ways to keep up with this trend is to implement automation technologies that support healthcare workers and management.

I think we are a long ways away from the science fiction future where a patient lays in an entirely automated medical pod that scans them and administers whatever drug, treatment, procedure, or surgery they need. A person’s tasks and the allocation of work will shift in part due to technology. But that has been happening for decades. There is also a longstanding debate about if technology creates more jobs in the long term than it destroys. It’s likely that in healthcare we will see new occupational roles, job titles, and tasks emerge that are in part automation related. Also, that tasks like filing paperwork or writing a letter will seem barbaric when a computer can, through little time and effort, do that for you.

Matthew Willis was talking to blog editor David Sutcliffe.

Exploring the world of self-tracking: who wants our data and why?

Benjamin Franklin used to keep charts of his time spent and virtues lived up to. Today, we use technology to self-track: our hours slept, steps taken, calories consumed, medications administered. But what happens when we turn our everyday experience — in particular, health and wellness-related experience — into data?

Self-Tracking” (MIT Press) by Gina Neff and Dawn Nafus examines how people record, analyze, and reflect on this data — looking at the tools they use and the communities they become part of, and offering an introduction to the essential ideas and key challenges of using these technologies. In considering self-tracking as a social and cultural phenomenon, they describe not only the use of data as a kind of mirror of the self but also how this enables people to connect to, and learn from, others.

They also consider what’s at stake: who wants our data and why, the practices of serious self-tracking enthusiasts, the design of commercial self-tracking technology, and how people are turning to self-tracking to fill gaps in the healthcare system. None of us can lead an entirely untracked life today, but in their book, Gina and Dawn show us how to use our data in a way that empowers and educates us.

We caught up with Gina to explore the self-tracking movement:

Ed.: Over one hundred million wearable sensors were shipped last year to help us gather data about our lives. Is the trend and market for personal health-monitoring devices ever-increasing, or are we seeing saturation of the device market and the things people might conceivably want to (pay to) monitor about themselves?

Gina: By focusing on direct-to-consumer wearables and mobile apps for health and wellness in the US we see a lot of tech developed with very little focus on impact or efficacy. I think to some extent we’ve hit the trough in the ‘hype’ cycle, where the initial excitement over digital self-tracking is giving way to the hard and serious work of figuring out how to make things that improve people’s lives. Recent clinical trial data show that activity trackers, for example, don’t help people to lose weight. What we try to do in the book is to help people figure out what self-tracking to do for them and advocate for people being able to access and control their own data to help them ask — and answer — the questions that they have.

Ed.: A question I was too shy to ask the first time I saw you speak at the OII — how do you put the narrative back into the data? That is, how do you make stories that might mean something to a person, out of the vast piles of strangely meaningful-meaningless numbers that their devices accumulate about them?

Gina: We really emphasise community. It might sound clichéd but it truly helps. When I read some scholars’ critiques of the Quantified Self meetups that happen around the world I wonder if we have actually been to the same meetings. Instead of some kind of technophilia there are people really working to make sense of information about their lives. There’s a lot of love for tech, but there are also people trying to figure out what their numbers mean, are they normal, and how to design their own ‘n of 1’ trials to figure out how to make themselves better, healthier, and happier. Putting narrative back into data really involves sharing results with others and making sense together.

Ed.: There’s already been a lot of fuss about monetisation of NHS health records: I imagine the world of personal health / wellness data is a vast Wild West of opportunity for some (i.e. companies) and potential exploitation of others (i.e. the monitored), with little law or enforcement? For a start .. is this health data or social data? And are these equivalent forms of data, or are they afforded different protections?

Gina: In an opinion piece in Wired UK last summer I asked what happens to data ownership when your smartphone is your doctor. Right now we afford different privacy protection to health-related data than other forms of personal data. But very soon trace data may be useful for clinical diagnoses. There are already in place programmes for using trace data for early detection of mood disorders, and research is underway on using mobile data for the diagnosis of movement disorders. Who will have control and access to these potential early alert systems for our health information? Will it be legally protected to the same extent as the information in our medical records? These are questions that society needs to settle.

Ed.: I like the central irony of “mindfulness” (a meditation technique involving a deep awareness of your own body), i.e. that these devices reveal more about certain aspects of the state of your body than you would know yourself: but you have to focus on something outside of yourself (i.e. a device) to gain that knowledge. Do these monitoring devices support or defeat “mindfulness”?

Gina: I’m of two minds, no pun intended. Many of the Quantified Self experiments we discuss in the book involved people playing with their data in intentional ways and that level of reflection in turn influences how people connect the data about themselves to the changes they want to make in their behaviour. In other words, the act of self-tracking itself may help people to make changes. Some scholars have written about the ‘outsourcing’ of the self, while others have argued that we can develop ‘exosenses’ outside our bodies to extend our experience of the world, bringing us more haptic awareness. Personally, I do see the irony in smartphone apps intended to help us reconnect with ourselves.

Ed.: We are apparently willing to give up a huge amount of privacy (and monetizable data) for convenience, novelty, and to interact with seductive technologies. Is the main driving force of the wearable health-tech industry the actual devices themselves, or the data they collect? i.e. are these self-tracking companies primarily device/hardware companies or software/data companies?

Gina: Sadly, I think it is neither. The drop off in engagement with wearables and apps is steep with the majority falling into disuse after six months. Right now one of the primary concerns I have as an Internet scholar is the apparent lack of empathy companies seem to have for their customers in this space. People operate under the assumption that the data generated by the devices they purchase is ‘theirs’, yet companies too often operate as if they are the sole owners of that data.

Anthropologist Bill Maurer has proposed replacing data ownership with a notion of data ‘kinship’ – that both technology companies and their customers have rights and responsibilities to the data that they produce together. Until we have better social contracts and legal frameworks for people to have control and access to their own data in ways that allow them to extract it, query it, and combine it with other kinds of data, then that problem of engagement will continue and activity trackers will sit unused on bedside tables or uncharged in the back of drawers. The ability to help people ask the next question or design the next self-tracking experiment is where most wearables fail today.

Ed.: And is this data at all clinically useful / interoperable with healthcare and insurance systems? i.e. do the companies producing self-monitoring devices work to particular data and medical standards? And is there any auditing and certification of these devices, and the data they collect?

Gina: This idea that the data is just one interoperable system away from usefulness is seductive but so, so wrong. I was recently at a panel of health innovators, the title of which was ‘No more Apps’. The argument was that we’re not going to get to meaningful change in healthcare simply by adding a new data stream. Doctors in our study said things like ‘I don’t need more data; I need more resources.’ Right now we have few protections for individuals that this data won’t be able to harm their rights to insurance, or won’t be used to discriminate against them and yet there are few results that show how the commercially available wearable devices are delivering clinical value. There’s still a lot of work needed before this can happen.

Ed.: Lastly — just as we share our music on iTunes; could you see a scenario where we start to share our self-status with other device wearers? Maybe to increase our sociability and empathy by being able to send auto-congratulations to people who’ve walked a lot that day, or to show concern to people with elevated heart rates / skin conductivity (etc.)? Given the logical next step to accumulating things is to share them..

Gina: We can see that future scenario now in groups like Patients Like Me, Cure Together, and Quantified Self meetups. What these ‘edge’ use cases teach us for more everyday self-tracking uses is that real support and community can form around people sharing their data with others. These are projects that start from individuals with information about themselves and work to build toward collective, social knowledge. Other types of ‘citizen science’ projects are underway like the Personal Genome Project where people can donate their health data for science. The Stanford-led MyHeart Counts study on iPhone and Apple Watch recruited in its first two weeks 6,000 people for its study and now has over 40,000 US participants. Those are numbers for clinical studies that we’ve just never seen before.

My co-author led the development of an interesting tool, Data Sense, that lets people without stats training visualize the relationships among variables in their own data or easily combine their data with data from other people. When people can do that they can begin asking the questions that matter for them and for their communities. What we know won’t work in the future of self-tracking data, though, are the lightweight online communities that technology brands just throw together. I’m just not going to be motivated by a random message from LovesToWalk1949, but under the right conditions I might be motivated by my mom, my best friend or my social network. There is still a lot of hard work that has to be done to get the design of self-tracking tools, practices, and communities for social support right.

Gina Neff was talking to blog editor David Sutcliffe about her book (with Dawn Naffs) “Self-Tracking” (MIT Press).

Facts and figures or prayers and hugs: how people with different health conditions support each other online

Online support groups are being used increasingly by individuals who suffer from a wide range of medical conditions. OII DPhil Student Ulrike Deetjen‘s recent article with John PowellInformational and emotional elements in online support groups: a Bayesian approach to large-scale content analysis uses machine learning to examine the role of online support groups in the healthcare process. They categorise 40,000 online posts from one of the most well-used forums to show how users with different conditions receive different types of support.

Online forums are important means of people living with health conditions to obtain both emotional and informational support from this in a similar situation. Pictured: The Alzheimer Society of B.C. unveiled three life-size ice sculptures depicting important moments in life. The ice sculptures will melt, representing the fading of life memories on the dementia journey. Image: bcgovphotos (Flickr)
Online forums are important means of people living with health conditions to obtain both emotional and informational support from this in a similar situation. Pictured: The Alzheimer Society of B.C. unveiled three life-size ice sculptures depicting important moments in life. The ice sculptures will melt, representing the fading of life memories on the dementia journey. Image: bcgovphotos (Flickr)

Online support groups are one of the major ways in which the Internet has fundamentally changed how people experience health and health care. They provide a platform for health discussions formerly restricted by time and place, enable individuals to connect with others in similar situations, and facilitate open, anonymous communication.

Previous studies have identified that individuals primarily obtain two kinds of support from online support groups: informational (for example, advice on treatments, medication, symptom relief, and diet) and emotional (for example, receiving encouragement, being told they are in others’ prayers, receiving “hugs”, or being told that they are not alone). However, existing research has been limited as it has often used hand-coded qualitative approaches to contrast both forms of support, thereby only examining relatively few posts (<1,000) for one or two conditions.

In contrast, our research employed a machine-learning approach suitable for uncovering patterns in “big data”. Using this method a computer (which initially has no knowledge of online support groups) is given examples of informational and emotional posts (2,000 examples in our study). It then “learns” what words are associated with each category (emotional: prayers, sorry, hugs, glad, thoughts, deal, welcome, thank, god, loved, strength, alone, support, wonderful, sending; informational: effects, started, weight, blood, eating, drink, dose, night, recently, taking, side, using, twice, meal). The computer then uses this knowledge to assess new posts, and decide whether they contain more emotional or informational support.

With this approach we were able to determine the emotional or informational content of 40,000 posts across 14 different health conditions (breast cancer, prostate cancer, lung cancer, depression, schizophrenia, Alzheimer’s disease, multiple sclerosis, cystic fibrosis, fibromyalgia, heart failure, diabetes type 2, irritable bowel syndrome, asthma, and chronic obstructive pulmonary disease) on the international support group forum Dailystrength.org.

Our research revealed a slight overall tendency towards emotional posts (58% of posts were emotionally oriented). Across all diseases, those who write more also tend to write more emotional posts—we assume that as people become more involved and build relationships with other users they tend to provide more emotional support, instead of simply providing information in one-off interactions. At the same time, we also observed that older people write more informational posts. This may be explained by the fact that older people more generally use the Internet to find information, that they become experts in their chronic conditions over time, and that with increasing age health conditions may have less emotional impact as they are relatively more expected.

The demographic prevalence of the condition may also be enmeshed with the disease-related tendency to write informational or emotional posts. Our analysis suggests that content differs across the 14 conditions: mental health or brain-related conditions (such as depression, schizophrenia, and Alzheimer’s disease) feature more emotionally oriented posts, with around 80% of posts primarily containing emotional support. In contrast, nonterminal physical conditions (such as irritable bowel syndrome, diabetes, asthma) rather focus on informational support, with around 70% of posts providing advice about symptoms, treatments, and medication.

Finally, there was no gender difference across conditions with respect to the amount of posts that were informational versus emotional. That said, prostate cancer forums are oriented towards informational support, whereas breast cancer forums feature more emotional support. Apart from the generally different nature of both conditions, one explanation may lie in the nature of single-gender versus mixed-gender groups: an earlier meta-study found that women write more emotional content than men when talking among others of the same gender – but interestingly, in mixed-gender discussions, these differences nearly disappeared.

Our research helped to identify factors that determine whether online content is informational or emotional, and demonstrated how posts differ across conditions. In addition to theoretical insights about patient needs, this research will help practitioners to better understand the role of online support groups for different patients, and to provide advice to patients about the value of online support.

The results also suggest that online support groups should be integrated into the digital health strategies of the UK and other nations. At present the UK plan for “Personalised Health and Care 2020” is centred around digital services provided within the health system, and does not yet reflect the value of person-generated health data from online support groups to patients. Our research substantiates that it would benefit from considering the instrumental role that online support groups can play in the healthcare process.

Read the full paper: Deetjen, U. and J. A. Powell (2016) Informational and emotional elements in online support groups: a Bayesian approach to large-scale content analysis. Journal of the American Medical Informatics Association. http://dx.doi.org/10.1093/jamia/ocv190

Ulrike Deetjen (née Rauer) is a doctoral student at the Oxford Internet Institute researching the influence of the Internet on healthcare provision and health outcomes.