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quality and safety of health care
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Wearable health technologies: better health for all or new ways to confuse, confound and exclude?

This is the first of two Croakey Conference News Service reports from a symposium examining issues for culturally and linguistically diverse (CALD) communities with emerging wearable health technologies.

Marie McInerney reports:

Over the next decade, millions of us will apparently not only strap on devices like fitness trackers to monitor our exercise and diet, we will likely implant and inject them to track everything from our sleep to lung performance, the growth of tumours, and our UV exposure.

Wearable health technologies are touted as one of the next major “digital disruptions” and a major advance in preventing illness, increasing health literacy, and improving health care.

But will they be all they promise for our health and wellbeing? And will they be accessible, meaningful and appropriate for all of us?

Not on the evidence to date, which tells us that these technologies are focused on devices like the Fitbit that appeal to the ‘white, well, and worried’ and not to those who might really benefit.

A symposium in Melbourne last week aimed to shape a research agenda on wearable health technologies that puts the needs and values of culturally and linguistically diverse (CALD) communities at the centre, rather than on the sidelines as they are now.

It was hosted by Melbourne’s Centre for Culture, Ethnicity and Health (CEH), a unique research centre on the grounds of North Richmond Community Health and alongside one of the city’s biggest public housing communities.

For 40 years, the area and service have been home to refugees and other newly arrived cultural communities but now, like much other inner city public housing, it is rapidly gentrifying and has lost the manufacturing base that once provided a pathway to work and broader participation for so many.

The CEH was partnered at the event by Melbourne University’s Research Unit in Public Cultures and the Better Health Channel.

Run at speed dating pace with participants from diverse areas, the three-hour symposium aimed to be a conversation starter and to kick off a community of interest around an overarching question posed by organiser Dr Ruth De Souza:

 Do wearables reinforce structural inequalities, or do they give us a chance to challenge those structures?”

It was clear the jury is very much out on the benefits of these technologies in general, much less to CALD communities.

As a result, discussions canvassed broader concerns about data, reliability, standards, interoperability, workforce/clinician readiness, privacy, and ethics, as well as specific issues for CALD communities – from language access through to whether such highly individualised technologies can be tailored to non-Western concepts of health, wellbeing, and care.

Digital disruption and the ‘Silicon Savannah’

Providing a market perspective, Deloitte Digital partner Sean McClowry told the symposium that wearable health technologies have had a slower take-up compared to other ‘digital disruptions’ like smart phones, with particular frustration around battery life and charging.

There have also been questions around the quality of data. It’s easy to produce lots of information – in fact we’ve seen nine times more data generated in the last two years than “in the history of humanity”, he said. “The trick is to make it meaningful.”

But he said it’s safe to assume that the accuracy and sophistication of wearables will continue to improve. (As will the risk of theft, he warned, with the “average health record” worth 10-20 times more on the black market than stolen credit card numbers).

McClowry highlighted some emerging wearable technologies including a flexible tattoo-like bio-stamp that can be embedded with sensors for heart rate, UV exposure and brain activity.

But who will they be aimed at?

Tweeting at @WePublicHealth last week, De Souza linked to an article lamenting that developers are more likely to focus on the easier, instant rewards of fad technologies (like the so-called ‘Dorothy’ shoe clips that when clicked three times will call an Uber ride home!).

That’s unfortunately at the expense, it said, of people who could most benefit – among them the old, the chronically ill, and the poor – and particularly if that requires navigating the more rigorous standards (and slower approval times) of the health sector.

McClowry is confident the technology will shift to other markets over time, saying we have seen that happen with the global distribution of the smart phone.

But he also pointed to where we could be looking for innovation, highlighting the development of an HIV and syphilis tester that was first piloted in Rwanda and is powered by a mobile phone or app.

He said unmet need is seeing African countries take a real “leapfrog” in new technologies, all centred around mobile phones (and leading to Kenya being dubbed “the Silicon Savannah”). As an example, the first electricity that many African households now get comes through renewable, clean energy, connected through their mobile phone.

CEH CEO Demos Krouskos also highlighted, in this interview, the ubiquity of mobile phones in refugee and migrant communities; one of the first pieces of infrastructure now installed in refugee camps is a mobile phone tower.

And thanks to participant @benomara for linking on Twitter to this project that provided mobile phone based peer support to a group of nine Sudanese women in Melbourne who had experienced trauma and difficulties associated with settlement.

Beware the equivalent of a mood ring

Melbourne university researcher and lecturer Suneel Jethani, who is soon to submit his PhD, said wearables technology has a whole range of advantageous applications that should make both clinicians and consumers optimistic – including in medical histories, remote patient monitoring, and producing data for clinical trials.

Other benefits are that they help link the environment to behaviour and health, help us accept certain aspects of illness and foster lifestyle change, offer greater flexibility, and they are cost effective, unobtrusive, easy to use, and can be incorporated into everyday devices.

But he titled his address ‘Curb your enthusiasm’ and counseled scepticism about what they really may deliver for health, particularly for CALD communities.

Jethani said the value of devices like Fitbits in clinical encounters is akin to taking a mood ring to show to a psychoanalyst.

He admitted he didn’t have to look far for evidence that wearables encourage cheating, saying he has an app that tracks his heart rate, and tells him what is life expectancy is going to be – “all those sorts of things you want to know at 9am when it prompts me.” He said:

I know how to cheat and I know how to get good data out of it. I know how to avoid getting a bad data set and I know if I use my left or right hand, or sit in a different position, I’ll get a different reading.”

Symposium respondent Bhargavi Battala, a media and communications student, provided similar insights, saying she had gone from not really wanting a fitness tracker to getting into challenges with friends on who could take the most steps in a day or week.

One had shaken her device to get it to notch up more ‘steps’ when she was losing the challenge. In fact, there’s at least one website, kindly pointed out by participant Chris Marmo on Twitter (@kurisu), that shows how to make results better.

Battala also observed how one day, when she’d completed her 10,000 steps task by 5.30pm, she refused to do any more. She was still feeling active but she’d done her quota so she stopped walking.

It made her wonder: how qualified are we to make decisions about the data presented to us and how much do we understand about the way the data is measured?

It was a question echoed by another participant, a sonographer, who said it seemed a “leap” to describe wearables as health technologies when they are fundamentally “very rudimentary measurement devices”.

He said an important question to consider was: “is the information being interpreted by the appropriate person, is it representing a complete picture of the diagnostic situation?”

Pharmakon and Western models of health

Jethani invoked the concept of pharmakon, where an object has the capacity to be both beneficial and detrimental to the same person at the same time.

One serious risk, he said, was that wearables may promote compulsive tracking of daily food consumption and exercise, or blind spots in analysing the data, that “might either repathologise or inadvertently pathologise a person with a tendency to body dysmorphic conditions.”

He showed slides featuring two quotes from users of the technology on its pros:

Your body usually lets you know when something is off, but it’s good to be able to give a doctor some specifics other than “I’m not feeling so good”

…and cons:

The worst part was the anxiety that I felt every time I encountered instances of “poor” data, such as missed or incomplete information, and activities which are not easily recorded or even quantifiable.

Of course the manufacturers and developers do not discuss what happens when their product is not operating smoothly, yet even if the application is working 100% as designed, it exerts force on the daily habits of the user in unexpected ways.

Those forces can create a great deal of anxiety, leading the individual to be less spontaneous and avoid unknown or unquantifiable situations.”

cheating tweetingLike others at the symposium, Jethani said a major issue for equitable health care is how to scale up this sort of technology from individual to community or population level, given different cultural conceptions of body, health, care, and responsibility. He said:

That’s always going to be difference between eastern and western philosophies on health and the body but also other cultural and socioeconomic determinants….”

It was an issue for others at the symposium who asked (among many other questions):

  • how do we resolve that ‘Californian cultural tendency’ to disrupt everything while also being culturally sensitive and respectful of policies and standards?
  • how do we bridge the gap between highly individualised, Western understandings of health and health technologies to address the needs of CALD communities?

Battala said it is surprising that the demographic “dividend” of wearables has yet to be addressed, with health technology seeming to look more “at addressing Western medicine than the alternative medicine (for example, Ayurveda, or Chinese Medicine etc).”

Jethani’s  other major concern was that getting technology to cater to “under-served” – usually less lucrative communities – may end up coming with more trade-offs, particularly in terms of data ownership and privacy, and even functionality.

It’s a risk that’s hinted at in another study shared by De Souza that looked at whether employees would be willing to use a wearable device provided by their employer, and how the data gathered could be used to benefit both.

Nearly 40 per cent said they did not trust their employer with access to their personal health data but, of that group, 25 per cent would consider doing so in return for increased pay or more flexible working hours.

A valuable trial with a crucial limitation

Wearable health technologies, of course, go beyond fitness trackers and commercial gadgets.

Melbourne nursing informatic specialist Janette Gogler provided insights from a randomised control trial that looked at emerging technologies for remote patients (that is, living at home) with chronic heart failure and chronic obstructive pulmonary disease (COPD).

Under the trial, the patients, who ranged from moderately to severely unwell, took a range of physiological measurements themselves, including electrocardiography (ECG) monitoring, blood pressure, and spirometrics.

Gogler, who is now based at Eastern Health, said patients welcomed being able to know more about their conditions and actually intervened earlier with medications, noticing their measurement weren’t good faster than that they felt unwell.

But the program also had to learn to manage expectations and be sensitive. One patient was upset when admitted to hospital for an unexpected urinary problem: he assumed the nursing team would have been monitoring it, when their focus was on his congestive heart failure.

Another, who was nearing end-of-life, asked for the machines to be removed, because he was watching his own physiological decline. “(It was) a constant reminder of his imminent death,” Gogler said.

There were other helpful lessons: it was important to avoid technical language (the project referred to ‘pages’, rather than screens) and it helped when the technology was efficient, easy to use, attractive, and safe.

But the most telling aspect, in the context of the symposium, was that the trial had to exclude patients who were not English speaking, because they would not have been able to respond to the device prompts.

Gogler said that while one device was later developed in Mandarin, she did not know whether Australia would be able to identify and respond to core languages of the many different cultures living here, and to ensure the interpretation was correct.

Another symposium respondent Mishell Hernandez agreed that access did not come by language alone. She said:

When we translate something, that doesn’t necessarily mean it gets through – there’s a difference between translation and interpretation.”

As well as contemplating what would make her sign up to a fitness tracker or other wearable, Hernandez talked about her non-English-speaking grandmother’s experience with having a surgical procedure: even with her daughter translating, she still struggled with issues about trust. Hernandez said:

Whether it’s technology or people, trust is really important in health care. That’s how you get people to sign up.”

Some #wearablesCEH Twitter snaps

room filing

L-R Danny Butt, Sean McClowry, Jeanette Gogler, Suneel Jethadi, Ruth De Souza
welcome
Elder Colin Hunter with CEH CEO Demos Krouskos (right)

 

View from a breakout group, discussing challenges and opportunities

culture club introTweet Culture Club

culture club 2


Bookmark this link to track Croakey’s coverage of the #WearablesCEH symposium.


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