What people think about this project... #1

I've mentioned to a handful of my family and friends that I've started this project. It certainly gets a passionate response... I say passionate as it has so far instigated some pretty ranty/involved conversations about very individual experiences each person has had. It reminds me that digital and personal health is very individual. 3 themes have come up in these informal chats.

 

1. Privacy. It can be hacked. 🙀

Some of the people I've spoken to have been very passionate on this point. Even when I make the argument that the same information on pieces of paper could be lost, stolen, set on fire, this doesn't have the same impact as hacking. It's a fair point but not a blocker.

 

2. 'I want one'. Most people have solutions in their minds and most people have access to devices or some kind of tech. They all said they would want something to manage and understand their health records.

 

3. Healthcare horror stories. Whether they have been caring for family or for themselves they have all had to make their own makeshift system to keep track of medication, diagnosis and treatment. Most people have horror stories or had bad experiences and want something to change.

 

It inspires me to carry on but also makes me wary and wide eyed about all the pit falls. I need to keep focused so will now get on with looking and organising this data I've had now for 2 weeks!

Talk review – 'Can startups save the NHS'

I attended a talk last night at Second Home excellently hosted by Soheb Panja from Courier which asked the question 'Can start-ups save the NHS'. It was an interesting insight into how start up's are trying to penetrate such a huge organisation which is governed by bureaucracy and complex work systems. There were many comments which stuck with me including a quote by Mahiben Maruthappu who said 'Digital has a big piece to play on preventable health problems'. I wholeheartedly agree and believe the more we own our own health the more we can prevent and help others in turn. Being reactive is how our local healthcare works now, and we should be striving for a predictive state where we, as individuals know the state and potential future state of our health.

Since I have been undertaking this project, I have finally considered being a blood donor - something of which I never considered before due to my fear of needles, and lack of consideration - I literally didn't think to do it. I have began to overcome the needle fear in the past few years - oddly by having a few tattoos I have faced up to this fear. But my main reason to want to donate is because I learned (through obtaining my health records) my blood type is one of the most common and ideal for donation. This is not something I would have thought about previously due to the lack of understanding but now I feel I can make a difference and want to take this forward. 

Some more frustrating comments were around how startups can work with the NHS and if you want to pitch a product it needs to solve the clinicians problems there and then - how you can save them time and money. Which to me is approaching the problem from the wrong angle, we should be looking to solve the patients problems which in turn looks to solve the issues around the NHS complex and impenetrable systems. This is from my own naive (non business focused) point of view, however if they switch this they might find better, longer term and more relevant solutions. Learn from patients not from backlogs of technical and UX dept.

The spokesman from uMotif made a relevant comment on how this can work - that the patients need to go to doctors and say 'we want this' rather than doctors/hospital's telling patients what they think they need. This has buoyed my enthusiasm to carry on with this project and see where it goes.

Check out this piece on Courier for a more in-depth business focused take on the subject.

Organising my data

So now I have the data, I want to do something valuable and usable with it. I will be breaking it down, pulling it apart and putting it back together. I have done some basic research to see how this type of information is organised in existing health apps.
 

Key points

  • Using medical terminology isn't helpful

  • Having a 'summary' of information is useful but how can you make a summary which would work for everyone

  • The concept of a 'timeline' of data could be an interesting starting point. This is how the paper documents seem to work but it needs to work harder

  • It needs to be relevant


My main aim from this exercise is to make sense of groupings of information, what goes together and what doesn't. I will then be looking into how to store it in a database type format. Something which should cross populate and what links can be made to piece of relative data.


The two examples below show simplicity to the extreme (you can only upload photos onto this app) and unnecessary complexity. 👇

Please send me any good examples if you have them to jo@okjo.uk. 👍

'What is your family medical history?'

How many times have you been to the doctors or hospital and the clinician has asked.

'What is your family medical history?'

I will typically reply with erm, well, erm my Nan had cancer twice and beat it but that was in her later life... I know a bit about my grandparents, a bit about my parents... is this relevant?

The doctor will then apparently write something down or completely ignore what I said and move on....

That was definitely not a correct family history report right there...

I realise I don't really know my medical family history or what that means and what the doctors need to know. It is something some families don't want to share with each other or can't for any reason. Or often information is shared verbally or through experience which can result in incorrect information being passed down from person to person.

How much should we know about our family and how do we know which parts are relevant? This does bring up some big privacy issues and I'm sure there are some health records we don't want to share with each other and some we know is vital to ensure understanding of anything which may effect our own life style.

It is something I will be revisiting further down the line - digital connections could be an answer but not without rules, security and privacy.

How much do you know about your families medical history? Has there ever been a situation you wish you had known something and you didn't? Do you wish you didn't know?

*please note I have been to many different doctors and this comment is a brief summary of my experiences.

What now

Now I have my records what am I going to do with them.... I spent an hour or so reading through them last night and had a little reminisce about some old stories... a whiplash injury from a toboggan ride when I was a child was a favourite! 

The records actually go back to my childhood which is super helpful.

I found out my blood type, and saw some reacurring issues I had not remembered had been going on for so long.  

I certainly gained more respect for the clinicians and it was reassuring to read their comments throughout time. Reading them made me feel like I can understand them more and gives me time to break down what they mean. I'm sure they have written what was said to me verbally but having it on paper in front of me certainly gives me more reassurance and confidence in understanding the issues. 

First step - get my medical records

The first step for me to start compiling my info is to get my medical history from the GP.

I visited the NHS website to find out how to go about doing this. This page was pretty helpful.

Monday

I called the doctors to ask how I can obtain my records. The receptionist informed me that she didn't know what the process was but I should call back on Tuesday to speak to the practice manager.

Tuesday

I called back asking the same question, but a different receptionist said I should call back on Wednesday between 10.30 - 11 to speak to a specific person. This time they gave me a name of the specific person. 👀

  • They asked if I wanted a summary.
  • I asked 'what does that include?'
  • They didn't know

Wednesday

I called at the specific time. 😄 I spoke to the specific guy who was very helpful. I asked what I would get. He informed me of the following:

  • A full summary is: Consultations, medication, past records
  • It would cost £10 to get them printed
  • I could not get a digital version of them
  • When you moved from GP to GP your records get sent back to the health authority (I presumed they go direct from doctor to doctor)
  • I should call back on Friday morning and see if he managed to get them all sorted, and he would let me know when I could pick them up
  • He asked if it's for insurance or lawyers, as people usually only request them for these reasons
  • He found it strange I wanted them but was happy to help

Friday

I called back at the specific time on Friday morning and my records had been made ready for me. Apparently due to there being non digital records dating back to 1990 it would now cost me £40 to take them away. 

£40!! 😮

I picked them up and begrudgingly paid £40 cash for some photo copies of my own personal data.

 

My £40 record! It wasn't even sealed. 😮

My £40 record! It wasn't even sealed. 😮

Researching medical record apps

So, the first thing I want to do is find an app where I could store my records... this is what I found:

I have 6 requirements at the moment

  • It has to be a free service/app
  • I can access it from my iPhone and online (this is due to the amount of information I need to add)
  • I need to trust it
  • It must be easy to use and well designed
  • I need to own my data and be able to export it at any time in a CSV format if I decide to stop using the service
  • It has to be secure

I found:

None of the above fulfils my requirements. If I have missed some good ones please do let me know.

I will be doing more in depth research as I go along the journey - this is a first glance from a users point of view.... trying to find what's out there.

Why now?

Thankfully, I am not doing this project due to any serious health concerns. I have a few on going issues which I want to understand better and have been experiencing difficult user experience across all of the touch points... GP, booking, letters, hospitals, aftercare... 

I feel clueless, and I want to change that.

In the past few years I also have experienced problematic healthcare situations through my family, from nieces and nephews being born to grandparents with dementia. In most cases the clinicians themselves were fantastic but the systems around that were more tricky. I want to explore how it can be improved or what services are out there I can use to improve mine and my families experience of health.

What kind of patient am I?

I am the kind of patient who:

  • Doesn't want to waste the doctors time
  • Forgets what the doctor said at the appointment
  • Find's making an appointment time consuming and off putting (due to having to call at a certain time)
  • Sometimes google's things but doesn't trust what it says
  • Trusts doctors advice
  • Feels nervous in the appointment room
  • Avoids hospitals
  • Scared of needles (although this is improving over time)
  • Doesn't understand medical terminology - and doesn't have the confidence to ask for a more simple explanation
  • Nervous about answering medical questions 'wrong'
  • Forgets detail about medical history

About this project

Something I, my family and friends have been talking about for what seems like forever is how difficult it is to understand your own health records. 

I have spoken to people working in the NHS on different levels and increasingly hear about how clinicians feel that patients should understand their own medical history, and take ownership of it.

I can openly say I don't understand my own records. I don't understand the language medical professionals explain any problems I may have and I don't know what the NHS knows about me.

I have decided to go on a mission to understand my records from the past and create a system to keep them digitally in a usable form for the future - I don't know yet what the outcome is but it must be something digital and scalable. 

This is a UX project led by my own direct user experience issues with our healthcare system. I will log each step of the way from my own perspective - I am the persona, I am the audience, I am the patient + and I am the designer. 

Lets see where this goes. 👀