Blog - Patient: Engaging, sharing, supporting – Part 2

Kayleigh Price is AQuA’s Improvement Lead for Safety & Mortality. In the first part of her Quality Forum blog she shared her thoughts on patient experience. For part two, she explores how innovation and technology can play a part in improving patient experience.

Kayleigh Price

In this second part of my blog I want to draw on patient innovators and tech. Thanks for staying tuned…

#Wearenotwaiting- How can we safely spread patient innovations and involvement?

Health care is notoriously reticent in using new technology; requiring many rounds of testing before anything can be deemed as fully safe. I’m not saying that this is wrong but we sometimes seem too scared of this tech to let out patients use it. Despite our fears, they are using it anyway. In fact they are using it and then some!

We heard from some patient innovators who had a very strong message for healthcare. This message was beautiful in its simplicity - #Wearenotwaiting (go away and search for it on Twitter- I promise you will be impressed).

Tic tacs for monitoring diabetes and finger tap apps for Parkinsons?

We also heard from Tim Omer who has Type 1 Diabetes. He, along with a number of fellow diabetics, has hacked his monitoring kit. He showed us a tic-tac box which had been emptied (I assume he didn’t eat all of the sweets!) and filled with some simple electronic circuits.

This then connected to his monitoring device to give him real time consistent monitoring of his blood sugar levels, without the need for him to constantly check it. He had then connected this to his smartwatch so that he could easily view this data and make adjustments according to what his body was telling him. Not only that, but this group of diabetics have created over 100 artificial pancreata, just by connecting all of these bits together.

Then there was Sara Riggare, who is living with Parkinson’s disease. She is using apps on her smartphone to measure and monitor her tremor, and uses this data to discuss with her care provider the best options for her care, depending on how her condition is manifesting in real time.

This blew my mind in a couple of ways. Firstly that people have the ingenuity to go out and create these things for themselves. Secondly, that they are having to in the first place.

Are our healthcare systems letting us down so much that patients have to take it in to their own hands to create solutions, often dicing with death whilst they tweak and finesse their systems? (I feel the need to point out that this is not just the NHS - Sara was from Sweden and some of the other speakers were from America and India)

Innovations and engagement for all?

The third and perhaps most important way that all of this has blown my mind is this - How can we as healthcare providers catch up to the innovations our service users are creating? How can we safely ensure access to these innovations for the vast majority of our patients, rather than the very small minority of activated and vocal patients?

And this is the real point I wanted to make - yes patients want to be involved in decisions about their care - of course they do. Let’s be honest, it doesn’t take a genius to work that out. But how best to do it? Not every patient is brave enough to push themselves forwards, or has time (or even the ability) to sit and develop innovative ways to assist themselves. Even those who are leaders in their field often cede all power once they become a patient.

I recently read a book called ‘When breath becomes air’ by Paul and Lucy Kalanithi (I thoroughly recommend this for ANYONE working within health and social care). Paul trained for years to become a neurosurgeon and this book outlines his story as he transformed from highly trained medical practitioner to end of life patient, and the feeling of loss of power that went alongside this.

If even someone who knew the system inside out felt unable to speak up about his care, how can we expect all of our patients to do so? How can we expect them to know what the best options are for them, and how they should go about researching them?

How can we truly engage our patients in their care, ensuring that all of the options (including those we may not have the power to offer them) are outlined? And how can we in health and social care ensure that this is done in a safe and inclusive way?

How can we adopt and adapt the technologies our patients are developing to ensure that access to these innovations becomes widespread? How can we do this in a system that is straining under the pressure? With staff who are stretched as thinly as possible without snapping? Who are trying their best to deliver the highest standards of care, but are facing ever growing numbers of patients, with less financial support and higher patient expectations?

I don’t pretend to have the answers to these questions, but I would love to hear your ideas for how we could do this. So, let’s start a conversation!

Tweet me @kayleighprice14 or email me at Kayleigh.price@srft.nhs.uk and share your ideas.  Maybe by working together we can come up with some ideas that might be testable, and we can move towards enabling our patients to fly.