The three-term Hawke’s Bay DHB member and Hastings Health Centre primary care liaison and long-term conditions nurse specialist received her PhD from Massey University’s School of Nursing. Her studies included following 16 people with significant long-term conditions over about 18 months, alongside their primary care clinicians.

She was driven to embark on the study after identifying gaps in the self-management approach to healthcare, which was geared to meet the needs of people with only one serious illness, the money or the connections to fully take advantage of that care.

“The families I talked to had all sorts of awful things going on in their lives – poverty and other disadvantages – and their health never really gets to the top of their pile of priorities, and the care we offer does not meet their needs as well as it could.

“One woman in my study was really, really sick, but she was also a caregiver for her brother, who was far more ill than she was. She couldn’t look after her health because her priority was looking after her brother.”

She said another woman had had heart attacks, asthma, diabetes, arthritis, and more. Her daughter had serious mental health issues, so she also took on six grandchildren aged from 4 to 16.

“As health professionals we say to you go for a walk or stop smoking – you may or may not do that, there’s not much stopping you.

“But for other people who may be looking after their grandchildren, have no money, are unemployed, or who are really sick and caring for other people it’s really hard for these people to pay attention to their own health.”

She said the doctors and nurses she spoke to found this frustrating because often they would be caring for other members of the patient’s families.

They had a good idea of what would work, but working within a system where forms had to be filled in and boxes ticked they felt they were not meeting their needs as well as they could be.

“We need to look at other ways of doing things,” Dr Francis said.

Having now completed her studies, she was also preparing to step down after 10 years at Hastings Health Centre, where she was working as a contractor until Christmas.

She said the plan was to create some space to see if she could do something with the findings of her study.

“It’s a bit difficult in Hawke’s Bay being quite far away from the main centres but I will look at what opportunities there are and how I can use my studies to help people regionally and nationally.

“I really hope my research might go some way to making people think differently about how we approach this sector of the community.”

In 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.”

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.

All 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.

I suspect, perhaps, it never was in common usage except in comedy skits about bossy, voluptuous, or sexualised nurses. None of these stereotypes are useful, and I am not going to explore them here. Instead, I want to ruminate a little on the notion of partnership and collaboration in nursing, and then on how we (the discipline this time) are doing.

This issue of Nursing Review has a focus on chronic illness. Latterly, this ill-defined category of illness has become known as Long Term Conditions, frequently written with Capital Letters, as I have presented them here. Of course, humans have lived with chronic illnesses for centuries. By definition, they are problems that can neither be fixed by current medical techniques, nor kill us swiftly. However, they consume a major portion of the health dollar all around the world.

Over the past 20 years or so, researchers have discovered what those with long- term conditions have known all along, that the person with the illness becomes expert at managing his or her life. Also that, on the whole, a respectful, collaborative relationship with the medical team is the most productive kind, and one that leads to the best outcomes. In the literature, this is known as self-management.

There are several models that can be employed by doctors, nurses, and others to achieve patient self-management. Some of them have been developed into marketable commercial commodities, and I know of many nurses who have learned helpful skills as a result of training in these methods.

A recent and very useful publication from the UK Health Foundation, Evidence: Helping people help themselves reviews more than 550 pieces of high quality research and identifies the most effective techniques to support self- management. Two stand out: increasing self-efficacy and encouraging behaviour change. The report also identifies the need for “a fundamental shift in power dynamics and the way both patients and professionals view their roles” and the need to better understand how to motivate all members of the team, including patients and clinicians, to be part of co-created health services.

I would be pleased to see some change in terminology as part of this shift; I see some tension in the idea that someone else supports my ‘self-management’. It doesn’t seem a very reciprocal idea, but perhaps I am being a little too sensitive. In any case the idea, and the practice when done well, is great. Which brings me to the question of how we are doing today.

Empathy is virtually synonymous with the profession of nursing itself – and as old.

That being so, it ought to be easy for the nursing discipline to move to a position of collaborative partnership with our patients. Indeed, our own New Zealand nurse theorist, Judith Christensen, described nursing as partnership in her 1990 book Nursing Partnership: a model for nursing practice. It is a comfortable thought, and I am sure there are many places where this is working well.

Yet, in a recently released longitudinal study, published this year by Ward in the Journal of Professional Nursing, found that empathy actually declined as nursing students were exposed to more clinical environments and patient care. Their findings are very similar to those in studies about medical students. As the astronauts said, “Houston, we have a problem”.

I have seen some exemplary practice throughout my career, but like most nurses, I have also heard horror stories and seen instances where care and compassion, let alone partnership, have been nowhere to be seen. There are workplaces where bullying is protected in a fearful culture of silence. There are instances of racism, sexism, and ageism alive and well in some corners of our health organisations.

There are nurses who simply don’t know what to do to make things better. I don’t know the answer either, but I do know that naming the distasteful is a powerful way of bringing it into the light. The simple question ‘How are we today?’ asked of each other could be a potent means of supporting our nursing self-management, of encouraging behaviour change, and of increasing our own self-efficacy.

I recently read the two ‘Francis Reports’ detailing the inquiry into care provided by Mid Staffordshire NHS Foundation Trust January 2005-March 2009. They are chilling accounts of things going quietly wrong until a full scale crisis erupted. Could it ever happen here?

How are we today?

Jo Ann Walton is Professor of Nursing at Victoria University of Wellington and an elected member of the Nursing Council.

Article references are available by emailing [email protected]