Long-term conditions: helping patients use apps and eHealth for self-management

June 2016 Vol. 16 (3)
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A dizzying amount of digital help is now potentially available for nurses to help patients self-manage their long-term conditions.  FIONA CASSIE seeks some advice from the experts on what technology nurses can add to their toolkits.

 

LTCIn 2010 there were 5,820 health-related apps available for smartphones. By 2015 there were 165,000 health apps and counting…

Google ‘diabetes advice’ and 67.6 million results arrive in 0.37 seconds; google ‘heart disease prevention’ and 64.1 million results are delivered in just under half a second.

The digital health revolution can be dizzying for nurses and consumers alike.

The potential is there for today’s digitally savvy ePatient to use not only Dr Google but to also be using mobile apps to count carbohydrates to heartbeats and to gather daily digital data on blood sugar to blood pressure; to be checking lab test results via their patient portal, and to be available for face-to-face video consultations at any time, anywhere.

But today’s nurse can also be working with the patient who is digitally poor – no broadband connection and always running out of phone credit – and struggling to control their diabetes, reduce their blood pressure or manage their asthma.

So while some long-term conditions patients are waiting for their nurses to catch-up with the digital revolution, others may be reliant on their nurse getting up to speed to introduce them to the difference that eHealth or mHealth could make to their health and wellbeing (see ‘Definitions’ box).

Because, says Dr Karen Day, the digital health revolution is not just for the mislabelled ‘worried well’ but also for those patients about whom nurses worry.

Day, a nurse and the health informatics programme director at the University of Auckland, says a lot of the digitally savvy ePatients are probably wealthy people who have the education and the means to take charge of their health and do well.

Then there are the patients who – according to the ‘inverse care law’ principle – are those most likely to benefit from it (mHealth) but the least likely to have access to it, says Day. “Those are the people that apps, mobile technologies and curiosity will help a lot.”

Janine Byrcroft Karen Day Westbrooke Robyn Whittaker Sharon Sandilands
Janine Bycroft Karen Day Lucy Westbrooke Robyn Whittaker Sharon Sandilands

No single platform is the answer

What technology platform is best for nurses seeking out new tools for their toolkit? The short answer from the experts is whatever works for the people you work with.

Around two-thirds of Kiwis aged 15 and over now own a smartphone – according to a recent online survey – and use it to access everything from music to the weather.

This indicates around a third of New Zealanders who regularly go online still don’t have a smartphone and in addition to this sizable minority are the Kiwis who don’t have the technology, money or inclination to go online and be surveyed in the first place.

Dr Robyn Whittaker, a Waitemata public health physician and mHealth researcher for a the University of Auckland, says her research team is aware that there is still a digital divide.

She says that’s why ideally health professionals should have a suite of tools available to them to support the self-management of long-term conditions to match the needs and technology available to their patients. “So whichever platform people should want to use, they can find material to support their long-term condition” – be it paper brochures to sophisticated mobile apps or a phone call to a text message.

There is also still an issue around internet connectivity, says Lucy Westbrooke, telehealth programme manager for the Auckland DHB.  Westbrooke has been involved in nursing informatics since the 1990s and is currently the chair of the nursing informatics general assembly of the International Medical Informatics Association (IMIA).

“One of the biggest challenges we have is whether people have access to satellite, 3G or 4G broadband services because, despite the rural broadband initiative, there are still gaps around New Zealand,” says Westbrooke.

The digital divide is why Whittaker’s team opted to use the now near ubiquitous technology of text messaging for an mHealth research initiative to support people with poorly controlled diabetes (see case study).  It is also using text messages in another project delivering nutritional and other health information text to pregnant women and mothers of young children and is about to launch a pilot study for a text-based cardiac rehabilitation support programme.

“Texting is an example of a reasonably simple technology that may help a lot of people,” says Whittaker.  “It doesn’t have to be apps.”

She says the focus should also be on what technological supports people are comfortable with and can fit into people’s lives. The research indicates giving people extra devices, like wearable fitness trackers, is less likely to be sustainable as people don’t want yet another device they need to charge or download data from.

This is echoed by Karen Day, who says health technology fitting into people’s lifestyles is important, with findings showing only 30 per cent of people persist with wearable devices after six months.

She believes health also needs to look closely at the phenomenon of online communities created by people sharing the same long-term condition – with just a quick search for Facebook arthritis communities showing the immense choice. Future nursing competencies may need to include being able to moderate an online conversation and being ready to provide advice and education through two or more degrees of separation.

Day believes nurses should also put to rest any fears that that telehealth technology will see a loss of connection with patients. 

She has sat in on one of the regular video calls between a telehealth nurse and an 85-year-old patient taught to use a digital monitoring device to daily check and record their blood pressure to pulse oximetry. “That isolation that you think the technology is going to make hasn’t happened – in fact it has connected the people better than a face-to-face appointment.”

Likewise, Day believes some health technology innovations currently used largely by the affluent could in time help address health inequities.

For example, last year an Auckland-based company launched Doctor2Go – a service offering 24/7 video, voice or messaging consultations with GPs via a secure mobile app aimed at the time-poor or people living far from a general practice.

Day says at the moment only the more affluent are trying it out but the technology has great potential for the low-waged or carless who can’t afford the lost pay or travel time for follow-up or monitoring visits to their GP or nurse.

 

LTC graphicAll apps aren’t equal

The digital divide does exist but there are still 2.5 million plus smartphone users in the country. Should nurses be ‘prescribing’ mobile apps to help their clients self-manage their long-term condition?

With literally thousands of health apps to choose from it can be daunting for both patients and clinicians to try and sort the wheat from the chaff.

“We are realising now that the cat is already out of the bag,” says Westbrooke. “How do you deal with what is out there and how do we ensure that people aren’t harmed by apps that could be put up by just ‘Joe Bloggs’ with no evidence-based research for what they are offering.”

The increasing sophistication of mobile apps – from analysing skin lesions for melanoma to using sensors to measure ECG (electrocardiograph) signals – saw the United State’s Food and Drug Administration (FDA) step in in 2013 to regulate apps that had crossed the line to becoming medical devices and could present a risk to patients if they didn’t work as intended.

But the FDA also lists many, many more app types that fell just below the threshold ranging from those aimed at improving medication adherence to exercise motivation and tracking asthma inhaler usage to calorie counting.

Popularity in the app store doesn’t equate to an app being evidence-based or clinically effective; ratings may be skewed by buying ‘clicks’ and reputable clinician-run sites, such as www.imedicalapps.com, that attempt to evaluate health apps are few and far between and are aimed at American or British audiences.

 

Health Navigator a first step

Health Navigator, the non-profit community initiative website (www.healthnavigator.org.nz) that has been helping Kiwis to navigate the health information maze for some time, is attempting to tackle the issue by taking the first steps towards building a New Zealand library of evaluated apps.

Dr Janine Bycroft, a GP and the founder and clinical director of Health Navigator NZ, says apps can be a helpful addition to the nurses’ toolkit for supporting LTC self-management but it is important that any apps they recommend are validated as some are potentially inaccurate or harmful.

“I think that is why when I talk to colleagues that very few are recommending apps because of the unknown.”

The Health Navigator website already provides a range of recommended LTC self-management toolkits from workbooks to videos and began on an ad hoc basis to also add mobile apps reviewed or recommended by clinician groups. But around 18 months ago it decided what was needed was a single national criteria for evaluating apps – something similar to the Heart Foundation ‘tick’.

An advisory group was set up and the first review – of a diabetes app used to track blood glucose – under the still-evolving criteria was recently posted to the Health Navigator app library and it hopes to have 20 reviewed apps up by the end of June.

Amongst the initial criteria are a thorough review using the Australian-developed and tested MARS (mobile application rating scale) that covers an app’s evidence base to aesthetics and functionality to user appeal, a clinical review from relevant clinician experts (is it clinically current, accurate and useful?), consumer test and technical review (checking for bugs, security and platform compatibility).

Bycroft says it will be evaluating apps suggested by clinicians from the relevant specialty’s professional group – for example, the New Zealand Society for the Study of Diabetes (NZSSD) – and asking non-tech savvy consumers to test whether it works for them.

The app initiative received a small amount of Ministry of Health seeding funding and Bycroft says as the library develops it will seek feedback from the sector on whether it is considered useful.

(The five-year action plan to implement the ‘refreshed’ New Zealand Health Strategy (2016) includes establishing “a list of certified mobile ‘health apps’ that service users and health providers can use with confidence (to be known as the ‘Health App Formulary’).” You can read a summary of the new Health Strategy (2016) and nursing leaders’ response in this edition’s online-only article New Health Strategy: What does it mean for nurses? at www.nursingreview.co.nz)

It is no easy task to set up an apps library on a shoestring budget, but ambitious though Health Navigator’s own attempt at an app library is, Bycroft thinks it is a project worth tackling.  “We’ve got to start – there’s huge potential with technology and we’ve got to look at how to harness that and make it easier for us to support and work with clients much more in partnership.”

 

Being open: Patient portals

Another eHealth initiative with potential for building partnerships between nurses and their LTC clients are patient portals.

About a third of the country’s 1,000 or so general practices are offering patient portals and in mid-April around 110,000 patients were registered portal users.

What facilities are offered through the secure online portal is up to each practice. Some start with patients simply booking appointments and requesting prescription repeats before progressing to offering patients whatever personal health record information the practice agrees to digitally share – from current medications and lab test results through to a patient’s full record. Portals can also be used for secure messaging between the patient and their practice nurse and GP.

This winter Day and GP researcher Dr Sue Wells are sending out a follow-up survey to GPs and practice nurses to find out current attitudes to portals. Her anecdotal feedback to date from nurses is that they are keen on portals as they are ‘sick to death’ of printing out lab results and would rather spend the time explaining results to patients.

Bycroft says a lot of the concerns expressed by GPs and nurses involve being inundated by questions from patients, but the overseas studies and the experience of New Zealand practices, including her own, was that they get very few questions.

She says the American Open Notes research indicates huge benefits to opening up access to patient notes, including that medication adherence improved by 75 per cent through patients able to double check their medications online, share results with their families and generally feel more engaged.

Whittaker says the onus is on the sector to provide patient-centred information and data in the language and form that patients can understand and act on without requiring a lot of clinician input; for example, presenting information graphically so people can understand the trends and providing links to click so people can see whether their lab test results are inside or outside the normal range.

Bycroft says Health Navigator is working with portal providers to see whether they want to provide links straight to the site’s section explaining common test results.

She adds that once people become more familiar with portals the potential is there for patients to upload blood pressure or blood glucose data to their portal and for any findings outside set parameters to trigger a response from the practice.

“We want technology to make it easier to do the right thing and to enable patients and families to develop the skills and confidence to manage well at home.”

It appears that the digital health revolution can potentially provide a step forward in building self-management partnerships with all patients – the tech-savvy and the tech-deprived. And there is always room for more tools in a nurses toolkit.

 

DEFINITIONS

Telehealth: defined as the use of information and communications technologies along with appropriately trained health professionals and other health workers to deliver health services and transmit health information over distance, using voice, data, images, and information.(Ministry of Health 2016)

Telehealth covers:

  • mHealth: anything delivered via a mobile device like a smartphone or tablet, including apps, face-to-face video consultations, text prompts, etc
  • eHealth: any clinical/business change enabled by information and technology solutions (Ministry of Health 2014)
  • patient portals: a secure online website where a patient can interact with their general practice and view their personal health record information (what services and information are available via the portal is dependent upon the general practice).

 

CASE STUDY: teleDOTS

Mobile video apps for face-to-face connection

Reducing the time public health nurses spend stuck in Auckland’s traffic can only be a good thing.

Lucy Westbrooke, telehealth programme manager for the Auckland DHB, has been involved in a project doing that for the nurses working for the Auckland Regional Public Health service.

Amongst the work carried out by the public health nurses is monitoring patient adherence to medication treatments for notified diseases like tuberculosis. In some cases this monitoring involves ‘directly observed therapy’ (DOT) to ensure, for example, a full course of antibiotics is taken to prevent the risk of relapse or an increase in drug-resistant tuberculosis.

So rather than sending public health nurses by car to battle Auckland’s traffic – serving a region spread from Waiuku in the south to Wellsford in the north – the service looked to technology for an alternative way of delivering ‘face-to-face’ monitoring.

Westbrooke says the first platform for remote monitoring was video telephones, but technology was moving rapidly so after an early evaluation it quickly moved on to using a video app for electronic face-to-face DOTs or teleDOTs as they are now known.

At first the app was used purely on computers and laptops but then it downsized so mobile devices as smartphones and tablets could produce the good quality images needed to ensure a patient was taking their medication.

They addressed the digital divide – clients without their own computer and broadband connection or a mobile device with plenty of data – by supplying them with iPads and 3G cards.

Finding the right app was not as straightforward as downloading Skype or FaceTime to a device because of the need to ensure a secure private connection for clients and patient data was not stored off-shore. So they are using a New Zealand-hosted video conference provider rather than one using cloud storage.

Westbrooke says the DHB is now talking to the community long-term conditions directorate about using similar telehealth technology to support other services including hospice and community palliative care and linking its mental health sites.

She says video calls also have great potential for supporting people doing home dialysis as you can help someone having problems by saying ‘just look to your right and you will see the button you need to push’.”

 

CASE STUDY: Diabetes text alerts

Crossing the digital divide with diabetes text messages

'Old school’ text messaging is at the heart of an mHealth project to help motivate and support people with poorly controlled diabetes.

Results from the pilot study indicate 
that keeping the technology simple and focusing on motivational text messages still made a positive difference to people’s blood glucose control.

Public health physician and mHealth innovator Dr Robyn Whittaker says the research team chose texting as it was conscious that a digital divide still exists, as not everybody has access to the internet by a broadband connection or a smartphone. Also internet and smartphone connectivity is still an issue in parts of the country and the affordability of mobile data is another issue.

“But everybody has access to a mobile phone and any phone can receive a text message – even if the phone is not in credit.”

Whittaker, who is the public health physician for innovation and research at Waitemata District Health Board and an associate professor at The University of Auckland’s National Institute for Health Innovation, says following a successful pilot of the joint DHB and university project, it is now running a larger randomised controlled trial across the country.

The SMS4BG (self-management support for blood glucose) programme offers people with diabetes (type 1 and type 2) a package of modules (including Māori and Pacific versions). Some participants choose to just receive motivational texts to help them manage their diabetes. But others also receive regular reminders to check their blood glucose – and can opt to send their blood glucose levels to the research team to be graphed – plus a range of other modules covering smoking cessation to preventative behaviour modules

The pilot with 42 participants saw some “really good improvement in glucose control” leading to the larger trial. The trial is seeking 1,000 participants – half randomised to receive the SMSB4G programme for up to nine months in addition to usual diabetes care and the other half receiving just usual diabetes care – and is still enrolling participants with a lot of referrals coming through primary health and diabetes nurses.

To find out more about the SMS4BG study – or enroll a patient – email [email protected].

 

CASE STUDY: Diabetes CNS

Diabetes telemedicine in the rural heartland

Telehealth helps rural diabetes nurse specialist Sharon Sandilands serve a community spread across one of the most beautiful but isolated stretches of the country.

Sandilands has a clinical master’s degree and has been a diabetes nurse specialist for the past 15 years – training at Nelson Hospital before the keen skier shifted five years ago to take up her current position based at Dunstan Hospital in Central Otago.

She supports the more than 300 people with type 1 and type 2 diabetes across an area stretching from Queenstown and Wanaka in the west to Ranfurly in the east and down to Roxburgh in the south. In 2012 – despite of and because of the isolation – she became the first prescribing diabetes nurse specialist in the South Island, which has reduced the barrier of travel for people.

She is employed as part of the Southern District Health Board diabetes specialist team and works in collaboration with her supervisor, Dunedin-based endocrinologist and associate professor Dr Patrick Manning, with whom she holds regular case reviews both in person and by email.

She offers clinics in Queenstown and Wanaka and most of the general practices across Central so she gets to mentor practice nurses in diabetes care. This means that most of the 18 practices she works with now have a nurse competent to start and titrate patients on insulin – though she is always only a phone call away – compared with  only two or three when she arrived in 2011.

Since last year she has been involved in offering up to monthly paediatric diabetes telemedicine clinics.

A big screen has been set up in Dunstan Hospital so Central Otago families can skip the six-hour-plus return trip to Dunedin and instead join Sandilands and the local dietitian at Dunstan for a video link consultation with paediatrician Dr Ben Wheeler in Dunedin. The children arrive with their downloaded insulin pump information to see “TV Dr Ben” who is larger than life on the big screen and she can do the physical examination and HbA1c tests while Wheeler from Dunedin can discuss test results, ongoing management and any other issues. And Sandilands can write any prescription needed there and then.

Amongst her rural diabetes patients are those keen on smartphone apps with quite a few using an app to download results from their blood glucose meter to share with her and others using apps recommended by the dietitian as being good for carb-counting. While she is concerned about the lack of validation of the many apps on the market she says with so many patients really keen the key was to work alongside the patients who want to use them.

New blood glucose sensor technology to avoid finger pricking (yet to be released in New Zealand) is also appealing to some of her younger clients who are bringing it in from overseas.

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  • Health Navigator is looking for health professionals to review health apps targeted at the following conditions:
    o Diabetes
    o Hypertension and Stroke
    o Mental Health and Wellbeing
    o General - such as eczema, alcohol tracking, neonatal care

    If you are keen to participate in this initiative, please contact Sandra Ponen [email protected].
    It's a easy review process - once you download the app, Sandra will send you an online form that guides you through the review process

    Posted by Sandra Ponen, 23/07/2016 12:34pm (9 months ago)

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