I saw this tweet from the organisers of the Mobile Health Meetup that was held tonight in London on the topic of “Exploring design around end of life care” quoting presenter Ivor Williams (Senior Design Associate at the Helix Centre) and it highlighted for me how important it is for us all to appreciate how our imagination is failing us and be more open to the unthinkable things that mHealth is making possible.
I’ve been lucky enough to get the opportunity to train Healthcare Professionals to better understand and deploy mHealth (eg. through the course that I developed for the Healthcare Informatics Society) and it’s clear to me that bereavement is actually one of the biggest opportunities we have to use mHealth applications with Patients but most Clinicians need to change the way they work first (something that I explained in this Doctors 2.0 event in Paris in 2014).
The BornMobile generation clearly do think “I’ve just lost someone, I’m going to use an app” (eg. they update their friends/networks via Facebook, whatsapp, etc) but surely it’s not too hard for us oldies to also appreciate the opportunities now that the vast majority of us use Google rather than the Yellow Pages (to look up the details of a funeral home perhaps)? Or to find a list of recommended reading for children who are mourning?
When Doctors let Patients communicate with them via their mobile they will find:
Patients will feel encouraged to share concerns that they have about things that an office visit might not be well suited to help (bereavement concerns are a good example of this as clearly most of us don’t have the time to take off to sit in a waiting room with sick people when they’ve got families gathering, funeral arrangements to make, etc).
The consulting process can be flipped: you no longer need to wait until the Patient turns up in your consulting room to know what their concerns are (eg. in this example bereavement) and this provides you with the opportunity to send information to your Patient instead of an appointment or perhaps as part of a conversation that can leverage the fact that we can all now look things up eg. “from the information you’ve shared via the Instant Medical History questionnaire I think it would be helpful to schedule a video consult or office visit (whichever suits you best) with my colleague Jennifer (the clinics counsellor). In the meantime here’s a link to some TedTalks on coping with bereavement that Jennifer thinks you might find helpful”.
Of course you can always say ‘not going to happen’ but please don’t then be surprised or ask why Patients wait until they arrive five minutes late for their 10minute 9am Monday morning appointment (when your waiting room is standing room only) to tell you they’re suicidal… it’s simply time you were retrained as the world has left you behind.
Update Thursday 9 Feb 2017: A video has been shared from the meeting:
Watching the video and it’s quite clear that the team at St Mary’s clearly have no imagination for the opportunity that mHealth offers (Ivor describes how they have his team in 2017 trying to polish paper based clinical records that are in clipboards on the end of beds in a trust that has an income of more than £900 million per year) and Ivor’s experience of medicine comes across to be like something he’s picked up from TV or anecdotes that have been shared with him by medics he’s met in his work at the Helix Centre (“you’d be surprised how many people turn up to A&E with the weirdest, vaguest symptoms that would be you know like chest pain and they’ve got like stage 4 lung cancer that they didn’t realise they had and at that point like you have days or some people just like arrest right there”).
“(51:40) it’s like a weird conflict. The app that we made ‘Cove’ is like a music maker, so you can make music and we built it for young people experiencing bereavement. So we found when we started the project we understood that a lot of young people going through a bereavement can find it very hard even when you’re a teenager to explain how you feel let alone something as devastating as losing your mum or dad or a brother or sister and our kind of hypothesis was that a lot of these social media platforms a lot of technology that is currently available have not been designed for grief. They’re not designed for the reality of losing someone. It’s too binary or it’s not deep enough it doesn’t provide you with the sort of elbow room to kind of be expressive in that way so we were like what if we just provided that alternative and how would that fly? But there’s something funny about it like everyone on our team has lost someone in the last year and we’re like whenever like one of our guys was like I’m really sorry I haven’t been in touch my gran’s just died and I’m like yeah playing Cove is probably the last thing you’re ever going to do.I feel really bad but the whole point is like there is a time and place for the technology. so for us it’s not like ‘i;ve just lost someone i’m going to use an app, it’s just never going to happen”
I think the classic mistake being made here is we have designers starting with technology and trying to use it to fix problems that they imagine Patients might have. It’s incredible that NHS Trusts are wasting resources on pie in the sky stuff like this when ICU Consultant Simon Ashworth is having to decide on BBC2’s Hospital which Patients have to die due to the shortage of beds.
Even as a musician with direct experience of tragic bereavement as a child I cannot imagine why a young person in such a position would ever want to use an app to make music that has been built by a designer working for a Hospital in the hope it would serve young people who have been recently bereaved.
I’m also completely stunned to learn that qualified Doctors at St Mary’s (a part of Imperial College London – the biggest medical school in Europe) are still using pagers and being taught to approach end of life discussions with Patients in a Paint-by-numbers approach with cues provided by an iPhone app that’s been built by tech designers who don’t have any real clinical experience:
To end positively Ivor proposed an interesting question needed answering: Technology is the answer but what was the question?
I think the question was: What do I need to understand better in order to make this quality documented healthcare affordable to more citizens?
Update Friday 10 Feb 2017: A response from @JimARosenberg to seeing this post shared on twitter:
This reminds me of an old Samsung Galaxy Tablet I have kept in a drawer as a memento. I used it on the bed of a relative I adored who was dying of cancer to show her a slideshow of some photos I’d put together for her. I could never forget how with very little strength in her body she pushed herself up and kissed the screen when I flicked to the photo of a very special new baby in the family that she would never see. 100% agree: “Yes tech fits in Endoflife”…
Update Friday 10 Feb 2017: A response from Child Bereavement UK after I asked (via twitter) if they had any evidence that pointed to the value of their iPhone app:
“Thanks for your interest in our mobile app which was created by a group of bereaved 11-25 year olds working with Child Bereavement UK for other young people who have been bereaved of someone important to them. It is also designed for use by their friends, parents, teachers and other professionals who would like to know how to help support bereaved young people.
The app was initiated and developed by the bereaved teenagers in response to the lack of accessible resources aimed at their age group.
To date, there have been 3,110 downloads in over 40 countries worldwide and it has won an award from the Patient Information Forum.
Feedback from users has indicated benefits around accessibility and reduce sense of isolation:
“The app enables you to get the support you want in your own space and your own time.” – Charlie, 15
“It would have helped me to feel I’m not alone and given me ideas of how to cope when my Dad died” – James, 17”
Update Friday 11 March 2017: I’m preparing for a talk to a group of medics in which I will be discussing this post and edited a couple of cartoons to help get my points across. Thought I might as well post them here (let me know if there’s anything you think I could add in the comments):