The UK Department of Health is currently running a campaign to crowdsource people’s ideas for ‘maps and apps’ and to gather feedback. They are interested in what apps people currently use and what they would like. From where I sit any campaign by the DH to listen and engage with people is a good thing, so I’m all for this. Check out the website to see what people have submitted and commented so far.
I had an idea tonight while talking with Lesley @nibby01 on twitter. She was recalling a story of how she’d sneaked a peek at her own chest x-ray and been really concerned about the two ‘growths’ on her lungs. When she got the chance to ask a doctor she was reassured that the growths were actually her breasts 😉 Come on, own up, who else has done that – tried to sneak a peek at the xray or notes, I know I have. I’m fascinated by that sort of thing – who wouldn’t be.
(cc) Photo by ryochiji
This got me thinking though, I have spent hours in hospital rooms and at the ends of beds, while my father has been ill with bile duct cancer. I have spent time looking at his charts and notes when they have been lying around. My Dad has had excellent care and the medical staff who have supported and treated him have nearly always responded with interest and enthusiasm when I’ve asked difficult or probing questions. That said, on the whole, I’ve always felt like reading the notes or charts was a little wrong, in fact my Mum used to panic that we’d get caught doing it – although she soon got into the habit of doing it herself, even if you don’t understand what you’re looking at over time it is easy to see whether something is unusual especially temperature, pain relief score or blood pressure.
I’m rarely afraid to ask for more information but even I used to sometimes feel like it was rude to be reading my Dad’s notes – even with his permission. I think the physical design of our hospitals, especially having notes clipped to the end of the bed, by a patient’s feet which is pretty much the hardest part to reach if you can not get out of bed without assistance, while invariably making the medical staff’s lives a tiny bit easier (knowing where they are, quicker and closer to access) leads to a power and control imbalance. The notes are the recordings of your health – as a patient why can’t you have access to that? More to the point there must be more reliable ways to record and monitor that data than on pieces of paper, clipped to a clipboard at the end of a bed. So how about an app for recording stats, preferably with a easy interface that patients understand – why not go crazy and give the patient the option of recording, inputting or monitoring this data. I know it wouldn’t work for everyone but I’m sure some would be interested.
My second idea, sorry I’m on a roll now, is about having access to reliable information – both within hospital and once you return home. This isn’t as simple as having reliable information – which is hugely important, but it’s about having accessible information that you understand and can share with people. My Dad is dyslexic and in stressful situations he can find it hard to process a lot of information or words. In fact the dyslexia is almost irrelevant, as a patient, family member or carer hearing lots of information for the first time, it is hard to process. My Dad’s consultant drew a diagram of a bile duct on the back of my Dad’s folder of notes and would often refer to it when talking to us, on another occasion a more junior doctor did the same thing, to help her explain to us Dad’s latest complication she drew it. As far as I’m aware doctors often draw pictures and why wouldn’t they, it seems a sensible way to share information. Certainly my Dad’s notes have a few drawings and diagrams in there – I have a sneaking habit, I explained before. So how about an app that includes simple diagrams that you can flash up on an iPad or tablet and show to a patient when sharing information with them. Better still, an app that you can share with the patient so they can access it and use to share information with their family and friends.
Which brings me onto my third suggestion – a simple, plain and easy, information sharing portal. This is not new, it is not rocket science, for all I care it could just share the functionality of facebook, in fact for all I care it could just be a facebook group or page – if support staff were enabled to write there too. When my Dad was (or is) in hospital it is hard to keep in touch with him. As a family member or friend it isn’t unreasonable to want to know how someone is doing, and luckily for most of the time Dad has spent in hospital he has had a mobile so he could text and keep in touch with us. That’s not always reliable though, and Dad doesn’t always retain the right information, or ask the questions that Mum or I would have asked if we had been there at ward round. We wasted hours of our lives, hanging around in the hope that we would catch someone on ward rounds when if there had been a virtual space that we could have logged into and seen a basic update – a daily tweet would do, it doesn’t need to take loads of time or have stacks of information in it, we would have been more comfortable leaving Dad to it. My Dad had a lot of treatment in Plymouth which is about an hour from where my parents live, so the daily two hour drive to see him got quite draining after a while (not to mention expensive) – I am confident that we would not have visited every day if there was a reliable way of getting an idea of how he was doing. To be fair when Dad was in intensive care it was usually easy to get this information by ringing up, but quite understandably that’s not possible once you move to a larger ward.
So an app that was updated with a status update daily would be great – in my dream world it would include an area for patients to rate themselves and how they feel and record their own observations, a place for the nurses or doctors to record, and of course an area for relatives or friends to ask questions, lets stretch it and include a photo sharing area too! The icing on the cake for this app would be if it had the functionality to allow users with the correct permissions to collate the info into a summary document and share more widely that would be fantastic. When a family member has an illness for a long time it can be incredibly draining to have to ‘fill in’ all interested friends and family members. You know that you need (and want) the support of all your friends and family, and you don’t want to offend anyone or leave anyone out, but it is hard work having the same conversations on repeat. Some way of creating a place where people can visit for updates, that takes the onus off the family member, friend or carer who is the liaison would be great.
I’m going to stop now, I didn’t expect to go on this long, but there are three ideas for starters:
1) An app for recording notes and observations – preferably that the patient can control if they would like
2) Simple diagram/drawings app with reliable information
3) Information sharing network portal
I guess, all of these could roll into one super-app, from my perspective it’s all about the information and giving patients more control of their situations. Bring it on.
ps I am delighted to report that the NHS have already developed the facebook-style info sharing system and there are several answers to patients record on the DH site already. I’ve added the picture/diagram idea – if you think it’s a good or a bad idea, please go give it a thumbs up or down http://departmentofhealth.ideascale.com/a/dtd/46021-15482 Thanks