Meet Janet O’Leary, 80, Dublin
Janet O’Leary, 80, has COPD, or Chronic Obstructive Pulmonary Disease, and also runs a support group for people in South Dublin living with the disease. They meet twice a week in a whitewashed community center whose windows announce bingo and car boot sales, and about fifteen of them then exercise together for an hour. ‘You get what you put into it,’ Mrs O’Leary says. ‘You can either give up, which to me isn’t great fun, or you can fight it.’
Ireland has the highest hospitalization rate for COPD in the 35 industrialized OECD nations. ‘You’re twice as likely to be hospitalized here than if you lived elsewhere,’ says Damien Peelo, executive director of COPD Support Ireland.
‘Partly climatic conditions play a part, and partly in Ireland there’s a higher incidence of a gene mutation that increases the risk,’ explains Dr Keith Thornbury, principal investigator in a new EU-funded COPD research project. It will link his Smooth Muscle Research Centre in the Irish border town of Dundalk with research laboratories at Queens University Belfast and the University of the West of Scotland. COPD is endemic in all three areas.
Meet Chelsea Hands, 27, Texas
COPD is largely associated with smoking, but Chelsea Hands, who is 27 and lives in America, has never smoked. She grew up around family members who did, and as a child, she got to know cough syrups well. ‘In case you’re wondering,’ she says, ‘orange is the worst, grape is all right, and cherry or no flavor at all is my favorite.’
She tweets about living with COPD. Technology helps her cope, and communicate. ‘It’s hard for me to say anything when I don’t know how my voice is going to sound,’ she says. ‘Sometimes it cracks, sometimes it’s a lower pitch, sometimes it’s strained as if I’m about to cry, and sometimes I sound like I just chain-smoked a pack of cigarettes.’
She has not yet found many other technologies to help her live with her disease. Air purifiers, she says, ‘make gurgling noises. The noise is loud and obnoxious.’
Digital technology for diagnosis
But Dr Meir Kryger, Professor of Pulmonary Medicine at the Yale School of Medicine, says that ‘in the last one or two years, people are using smartphones as part of monitoring their own disease and their own treatment.’
He points to sleep apnea, a respiratory disease of which he says 80 per cent of people living with it are undiagnosed. ‘You can get some preliminary information by simply looking at the noise from snoring – many people with sleep apnea snore quite loudly, then stop breathing, which a mobile app can detect,’ says Dr Kryger.
This may be enough to tell someone to go to their doctor, but measuring blood oxygen levels, which drop when someone with sleep apnea stops breathing, can also be done with a special sensor which tethers to a smartphone, he says.
Digital technology for treatment
Already common and helpful, mHealth apps are another approach which Britain’s National Health Service has found incredibly effective. Using an Android mobile or tablet, COPD patients keep daily diaries about their pulse rates, oxygen levels (through a tethered oximeter), breathlessness, and coughing. The app then gives users tailored self-management plans, and raises an alarm if it predicts an ‘exacerbation’ episode, a sudden worsening of symptoms, may be coming soon.
In a 2015 study, an mHealth app was able to predict 40 per cent of exacerbations beforehand. And 95 per cent of the time, the user (88 per cent of users were over 60) was able to enter all of the information within 100 seconds. And similar apps are being introduced worldwide – for people living with COPD in Canada, and helping Dutch sufferers be more physically active every day.
Continuous Positive Airway Pressure (or CPAP) machines are now an old albeit trusted therapy for sleep apnea, but the new machines, Dr Kryger says, speak to the cloud. ‘The data can be monitored by a doctor, to tell whether a patient is being treated properly,’ he says. ‘Not only that, but a patient using a smartphone can see if the treatment is working for them.’
‘We’re on the cusp actually of a revolution,’ says Dr Richard Russell, a consultant in respiratory medicine and medical advisor at the British Lung Foundation, who also edits the International Journal of COPD. ‘Not just with good drugs, but in personalized medicine,’ he says, we are soon going to see widespread ‘personalized, molecularly- based anti-inflammatory therapy.’
What does the future have in store?
Technology will in the next five years begin targeting treatments ‘in a much more efficient and safer way,’ says Dr Russell. So one person with COPD might be predicted to respond well to an implanted endobronchial valve, while another might be a promising match for a particular drug therapy.
Another further-off development towards more personal therapies could lie in modelling a patient’s own lung, using a swab of their cells. ‘It’s what’s called organs on a chip,’ says Dr Remi Villenave about his research, saying his modelled lungs are ‘about the size of a USB stick.’ Dr Villenave researched technology and COPD during a post-doctorate at Harvard, and has recently been involved in launching a medical tech start-up in Boston.
If a revolution in digital respiratory health is around the corner, it is still the way with revolutions that they tend to hit some countries before others.
The 2016 Future Health Index (FHI), released last June, looked at 13 countries, surveying a total of 2,659 doctors, surgeons, and nurses, along with 25,355 adult patients. Differences between countries, it turns out, are vast in terms of readiness to adopt digital technologies and connected models of care, combining a patient’s mobile with the cloud and – when needed – their doctors and nurses.
One pattern that appears is emerging countries–like the UAE and South Africa–are early adopters of digital health care. As has been the case with smartphone technologies in Africa, like mobile money, these countries have ‘leapfrogged’ others dealing with older legacy systems. In China, to take an example, 61 per cent of patients have devices, software, or apps to monitor their weight, compared to 29 per cent in France and 35 per cent in Sweden.
Back in Ireland, at the moment, Mrs O’Leary isn’t using any apps to manage her COPD – yet. But she may well be temptable.
I get out, and you look around and you see people with wires strung out of their ears, and what’s the difference?” says Mrs O’Leary. “They do it for pleasure and it doesn’t look any different really – I’ve got tubes coming out of my nose, it’s not that much different.