Archive March 2019

The Digital Academy

Experiences, insights and tips from a cohort one NHSDA plodder, with no post graduate academia ability!

Modules Display at Residential 1

As I’m re-reading and tweaking the last assignments, correcting the spelling errors and checking the references this seemed the ideal time to share some thoughts on the journey the DA has taken me. Hopefully there is some musings of worth for cohort 2 and beyond within!

OK, so… you “get the email” and you are accepted! Congratulations! You’re in for a one amazing ride! The DA is still new, the paint hasn’t dried and the vibrant buzz in the room on the first day of the first Residential will be a revelation.

Team exercise to build Card Tower
‘mmm… guys look at what they’ve done…’

But first things first, we are all very very busy people… as soon as you get the Residential dates get them in your personal and work diaries immediately. You cannot (and will not want to) miss any days… the time at a Residential is golden, pure turbocharged learning, every day is massive, and every day will be packed with learning that will leave you inspired for months to come.

Day with Havard students and joint Speakers

My first top tips are to enthuse and engage with your peer group, make a What’s App group for chat and support, make a Slack group for sharing and peer critique of your work and ensure to drink a gin or two at the end of the day whilst sharing reflections on the end of your first day. 

Residential 3 Dinner

Your peer group is beyond doubt a vital lynch pin. The connections you make with these colleagues will be deep. Effective peer groups enhance the DA experience more than I can place into words.

My peer group are now trusted and life long friends, I call them “thunder buddies for life”. When the workload is high (more of that later) and you cannot find that paper / really need to let off steam; there are colleagues who can appreciate and guide and support. It’s also really good fun to be part of the DA day to day with likeminded folk!

If, like me, you haven’t done any true academic learning for over 25 years there is an element of culture shock. The first module is an excellent scene setter, and eases you in to the learning process. Top tip… define and ring fence dedicated time straight off the bat. When that time is obviously different for everyone, but make sure it’s time just for the DA. If the time is at work, turn off your email app, put your phone on divert. You will have a local to your organisation sponsor; book in regular (at least once a month) catch-ups with them. They can be crucial to help open doors for the modules. Get them on board right from the start. They need to appreciate the scale and worth of your endeavours, which will be huge. 

Module 1 Evolution of Informatics Exercise

As cohort one the DA course organisers were straight up with us, they had an idea what the time commitment was, but that was an estimate. Cohort one has truly been listened to, co-design has been high on the agenda all year. In terms of time I would say on average it’s 5 to 8 hours a week, this is for a late middle aged clinician who hasn’t done a Masters and had no idea how to write, never mind cite a paper, who has a lust for knowledge… that is the time I needed. Make of that what you will. Some weeks flew by, others took considerably more. I didn’t need to take any annual leave to complete the work, but certainly a dozen weekends over the year have been pretty much DA only. I am known in my peer group as a plodder, I’m not a fast learner.  The thing is, on the whole (everyone has a bad day once on a while) it’s not felt like a chore. The reason is simply that the course content is spellbinding.

Considering the short time frame that the degree was devised in it’s a breathtaking feat.

This will be even better for cohort 2, in fact I’m even jealous of future cohorts, as they will be experiencing an even better course. 

It’s vital you consider when you are going to take annual leave, some forward planning is needed to be sure the deadlines for the work are in your mind, so you can complete what is required and have time to relax and recharge. 

Keep your sense of humour! Yes, there are fundamental academic expectations; this is a postgraduate degree from some big hitting and respected institutions of higher learning. But, there is a time and a place for some light hearted moments, I wont put any spoilers in here, but there will be some times of pure hilarity I assure you! 

So, to rap this up I would say:

  • be organised
  • engage immediately with you peers
  • make dedicated time
  • ensure you have time for yourself
  • download as much as you can to read when you can (I also have to admit to watching the majority of the videos at twice speed whilst reading the transcripts)
  • do not skip the optional material
  • and always have in the back of your mind some relevance to your situation when composing assignments.

Finally it’s worth re-iterating that the DA is a co-designed course between the faculty and the members, you really feel part of a digital entrepreneur family. I will miss it once I’m done. I have never said that about any other post grad learning in my entire career. Enjoy it, you will miss it once it’s happened… I already am.

@JCLiaCRH

Who owns my health data?

In 2008 I was diagnosed with Polycystic Kidney disease and as a renal patient was offered access to PatientView which gave me visibility of my blood results on that same day as I have the blood test.

PatientView welcome screen

PatientView is a great system and gives me more control of my health and almost realtime access to key results information. If everyone who wanted it could have it I think it would make a real difference. If I see something that looks odd I can escalate to my consultant and get a rapid response. I use the data to plot my kidney function and accurately predicted future deterioration ahead of kidney failure.

Kidney function graph

I’ve always taken an avid interest in my health. Recently I had an ultrasound of my transplanted kidney to check all was well – I was surprised at the refusal to allow me to take a picture of the screen and the reluctance to even let me see the image on the screen. It made me think there is still a long journey to reach real engagement and patient owned records.

I was sad that the staff probably felt they were helping and protecting me by refusing my request to see my data. For someone very keen to ‘own’ their condition I felt excluded from my care.

My kidney is completely normal – but the experience made me wonder who owns my data? Me or the NHS? Was it right or wrong of the clinical team to refuse my requests to see the scan? And isn’t the image of my kidney mine anyway – or does it belong the the NHS as they funded gathering it?

In my study on the NHS Digital Academy I’ve reviewed other health systems including the innovative Estonian eHealth model where all citizens own and control access to their health data online.

I think health and care in the UK is on a journey towards more accessible records but we’ve still got a long way to go – and perhaps the culture in the NHS needs time to adjust and develop to reach acceptance that giving more ownership and responsibility to those who request it is a good thing.

I recognise the arguments for NHS control of investigative treatment data in case there is sensitive information that needs to be carefully shared with the patient. But I also believe there are benefits for one’s own health that comes about through transparency, ease of access access and visibility of my own data.

I look forward to a time when our health records are available via the internet on secure patient portals and perhaps the new NHSApp is the beginning of that future.

NHS App Screenshots

For now I’ll get on with a subject access request to get a copy of the ultrasound images of MY kidney – which no doubt will cost more to provide compared to having just let me see the images at the time of the scan.

What are your views of personal health records?
Should the NHS offer greater visibility to patients or not?

@robblagden

Rob Blagden works for 2gether NHS Foundation Trust in Gloucestershire as Deputy Director of IT, he is also the Trust’s Lead Governor. Rob was recently elected to sit on the first Alumni Committee for the Digital Academy.