Patients 2.0: Navigating life after cure
Community-based care forms a key part of the future of the UK health and care system. The NHS’s long term plan has set out ambitions to ‘boost out-of-hospital-care’ and ‘dissolve the divide between primary and community health services.’ Despite a series of policies sought to strengthen health services outside hospitals, community services still remain poorly understood and challenges are still faced around funding, shortages in workforce, limited national data on activity and most importantly, appropriate awareness around the issue.
For individuals living with chronic conditions who rely on community-based care, digital tools have played a buffer role in providing functionalities that make everyday life easier. Most recently, as part of its ten-year plan, NHS England has pledged that health professionals will receive the digital tools they need to make digitally-enabled care ‘mainstream’, especially for those working in community settings.
The digital tools rolled out in the last few months have been hailed for their role in improving communication between patient and healthcare professionals, connecting individuals with mental health resources, and assisting with everyday administrative tasks. Although the UK government has released information on the digital innovations tested to support vulnerable people during the COVID-19 outbreak, lists like these are not exhaustive and do not cater to every health and wellbeing need required after cure.
Healthcare IT News spoke to patient speaker, Monica Evason about the importance of bringing awareness to digital tools that are tailored to the specific needs of individuals post-cure and how they can make a significant difference to navigating everyday tasks. In September, Evason will be a moderator at the HIMSS & Health 2.0 European Digital Event, in the ‘Community-Based Care: Building the Digital Continuum’ session, where the panel will expand on some of these key issues in greater detail.
The impact of the post-cure gap
“A key area of my work is around education and awareness of life after cure. This is what we classify as the post-cure gap. There is a massive gap,” explains Evason.
“Both my husband and my son are survivors. When they were being treated in hospital, the support system was incredible. But like many families, we found that when we got home the support wasn’t there. It wasn’t a holistic treatment, we just had to wait until the next appointment.
“When you survive, that is the end of one part of life but really it marks the beginning of a new one, which is you’ve got to adapt to a new normal. The term 'new normal' has come a lot out of COVID-19.”
Expanding on the impact COVID-19 has had on the post-cure gap, Evason said: “What COVID-19 has made us realise is that instead of working in silos, we can interconnect.
"What we’ve been learning in the corporate world, we can apply into the hospital world. For example, having courageous conversations - we’ve been doing for years in the corporate world. That’s now coming into hospitals. Doctors need to learn to have those painful difficult conversations.”
Evason went on to explain why there’s space for improvement in the digital apps offered and the importance of adopting an interconnected approach to ensure tailored care: “I was completely horrified to hear that a lot of families split up and relationships fall apart when their child survives. That seems ironic, surely we’re celebrating the survival but we focus so much on survival, it’s been at the expense of quality of life.
“So the digital platforms are incredibly important to help promote that. The problem is, that it’s not joined-up thinking. A lot of the time the apps that are out there do one concrete job.
"There might be a medical app but that’s not necessarily interconnected with one that promotes wellbeing and so really what we’re looking at is a whole blended approach. Not working in silos but working together much more collaboratively, much more collectively.”
Evason also highlighted MediQuo as a digital app in the post-cure space she’s most looking forward to learning about at the HIMSS & Health 2.0 European Digital Event: “Another key part is having a space where anybody around the world can ring and ask any medically related questions.
"How many people ignore their symptoms for too long to avoid going to a doctor’s surgery? An app like this one means people can ring, put their mind at ease or take action. When we find a good app, we should all be promoting it.”
Being able to see with the help of digital tools
Jason Monero is one of the many young people that Monica Evason works with to improve quality of life post-cure. As a visually impaired teenager he has a complex medical condition and yet the support he looks for from the digital world isn’t for the medical issues, it’s for managing life. He has written the list below entitled, ‘being able to see with the help of digital tools’, which details the digital apps and tools that help him complete a range of tasks through each day.
The Liquid level indicator - It’s a great gadget for making drinks. When pouring liquids it will let you know when you have reached near the top of a glass or mug.
Talking watches - Some might say there is nothing more handy than a gadget on your wrist to let you know the time. Let’s see if we can top that. What if that gadget on your wrist spoke the time, set alarm reminders, as well as tell you the date? Well, mine does. You can get a number of different talking watches linked to your mobile phone.
Dictaphone - I use this as a note-taker, as well as to keep myself in check when giving speeches, without using paper. It leaves people wondering how I remember all the things that I am talking about. The other handy feature with some of these are the extra folders for music and podcasts.
Mobile phones with speech software - This was a revelation for me when I first lost my sight. I would’ve never imagined a phone with speech software which makes it possible for me to use not just for calls but for email, podcast, music etc. This is really your everyday smartphone that anybody could use but with a few taps on the screen, a blind person like me can access everything in the same way.
Seeing AI - A Microsoft App, this is a brilliant app that is improving all the time. It lets you explore the world around you, be it through reading documents whether handwritten or text, descriptions of pictures or scenes, colours and my favourite - it tells you when the light is left on.
TapTapSee - This app is brilliant at describing things in detail like descriptions of clothing and sceneries.
BusMate - It gives you instructions for the nearest bus stop and you can select the route you would like to take. I learnt about this app from a meeting I attended with my visually impaired group. I decided to give it a go on my way home as it was not far to go. What should’ve been a five-minute walk was calculated as a half an hour journey, so I gave up.
Smart TV box - I use this with Freeview. It is very handy as it will speak the TV channels, programs and the time. It will even read out announcements, for example if an update has come through. Not to mention the TV that it is connected to automatically has audio description.
Sky Q - Has a remote I can speak into to request channel changes as well as recordings. It also gives you access to programs with audio description but you have to turn that function on yourself. It does not read program menus out loud but with the help of Sky I can go on my phone or iPad, and still get the menus and programs read out to me.
ATM with headphones - I still haven’t mastered this yet. Gave it a try and it only worked part of the way. To be precise it sounded like R2d2 or BB8 (Star Wars).
Vibrating sunglasses - It will let you know how far or how close you are to objects by giving you a short vibration. I find it only works when things are directly in front of you.
Sonar cane - I have used this and found it useful. You can have it attached to your cane. It connects to headphones and lets off a sonar which grows sharper depending on how close you get to an object.
BuzzClip 3m radius - This does the same as the sunglass but is attached to your cane.
Be My Eyes - You have to give this app access to your camera. Someone will assist you to help you find or look where you want to go, through your camera.
Learn more at the HIMSS & Health 2.0 European Digital Event taking place on 7-11 September 2020.