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.
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| 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.
