Why is Patient Design Essential in Healthcare? / Episode 6 – The Medical Futurist

hi, this is dr. Bertalan Meskó, The
Medical Futurist, and in this episode I would like to talk about the only
expression anyone dealing with digital health must know to understand the
context around the changes in healthcare patient design. First, let me tell you
about the powerful community that has formed out of diabetes patients for
people with diabetes managing their condition means regularly monitoring
their own blood sugar levels and then adjusting their insulin level using
frequent injections of it here is Kerri Morrone Sparling, author of sixuntilme.com and
the superstar of the global diabetes community describing what diabetes
patients are thinking about. Hi, I’m Kerry Sparling and I’ve been living with type
1 diabetes for 33 years. I’m not sure if I know exactly what’s trendy in terms of
diabetes management but I do know what’s useful at least to me I’ve been living
with type 1 diabetes since 1986 and for the last 33 years monitoring my blood
Sugar’s has been the utmost importance to me when I was first diagnosed I was
given a urinalysis kit to check my blood sugar using urine samples and then I
moved on to pricking my finger and using a glucose monitor in that way but over
the last decade or so I’ve had access to a continuous glucose monitor monitor
which reads my blood sugar real-time so instead of pricking my finger and
getting a number a data point every few hours I’m able to get results than
checking in every three or four minutes giving me streaming video of what my
blood Sugar’s are doing and this has been instrumental in terms of
transforming my care as a person with type 1 diabetes because I’m able to see
my blood Sugar’s in context and I’m able to make medication decisions and life
decisions based on numbers that I’m seeing the ebb and flow of in that
context is so important because it allows me to live my life with diabetes
as part of it instead of living my life with diabetes at the center of it
patients are being given access to in control of their personal health data
and this is crucial because there is no one more invested in making sure that I
live well which type of diabetes than me it’s a
daily struggle where the stakes are life and death and for decades they have been
told that the Cure is just five years away but it never came an FDA approved
relief came in the form of the insulin pump that can deliver the hormone
directly into the various body that helps keep blood sugar more tightly
within the desired range but if an also mean pump users have to test their blood
sugar more frequently than before the solution to that problem comes in the
form of a continuous glucose monitor or CGM this device reads the patient’s
blood sugar levels every five minutes giving them almost real-time view of how
their glucose levels are changing to help them refine their pump but that
raises a whole new problem it gives too much information to the patient
information that not many can actually use but can make it even more
overwhelming and stressful to manage their condition the diabetes community
needed a closed-loop system where the glucose monitor and the insulin pump are
able to communicate with each other to keep the patient’s blood glucose more
tightly within the desired range essentially they needed to replace the
job of the malfunctioning pancreas with an advanced technology years ago it was
clear that medical technology companies could come out with the first artificial
pancreas but regulation was lagging behind so out of frustration over the
crippling speed of bureaucracy a movement has emerged a movement of
empowered patients who have had enough has their slogan hashtag vie are not
waiting basically they started to create an artificial pancreas for themselves
using instructions in social media and algorithms in open access databases
these devices are homemade do-it-yourself tools designed to release
insulin in response to changing blood glucose levels in a similar way to how a
human pancreas does it it’s a combination of the insulin pump and the
glucose monitor working together with open source software created and
tailored by the the failure of medical hardware
companies a regulatory bodies have turned a diabetic community into one of
the most proactive safe reliable empowered patients in medicine they are
developing platforms apps and cloud-based solutions and reverse
engineering existing products to help people with a similar condition of
course it’s not an ideal approach and it’s outside the traditional regulated
world of medicine but still the diabetes community managed to start a health
evolution and in 2016 the first FDA approved artificial pancreas reached the
market it’s a revolution led by patients instead of Big Pharma or policy makers
the diabetes community penetrated the ivory towers of healthcare and left no
choice to medical companies and regulators but to follow them diabetes
patients represent the Trojan horse of digital health and they represent the
future of healthcare because patients are the most underused resources in
health care now let me tell you about Dave deBronkart, or e-patient Dave as
he is commonly referred to: in 2007 he was diagnosed with stage 4 kidney cancer
fortunately he was saved state-of-the-art care and today he’s
alive and well but since he got cancer-free he has dedicated his life to
spread the message of how much patients can participate in their own care after
his diagnosis Dave by the advice of his doctor went online and asked around
about his disease on a community site called a core a cor within two hours he
got responses and valuable treatment advice
that he verified with his physician and they chose the treatment he received
crucial information that came from outside the establishment and when he
posted about his experience he updated and furthered the knowledge of that
particular community of patients the way he puts it back in the day Encyclopedia
Brittanica and Wikipedia both were found to have similar error rates but the key
barriers were fixed within days and in his case him being engaged
being active instead of passive throughout his treatment and recovery
was life-saving let me tell you another story Lindsay Fallow a software
developer turns science journalist came up with the fantastic idea of patient
series she’s coping with multiple endocrine problems including adrenal
insufficiency and a type one Brian diabetes with severe asthma and gastric
issues it’s clear what a complex skill set it must take to manage these
conditions on a daily basis she said she came up with the idea of a patient CV
when she was thinking about an upcoming appointment with a new specialist she
was trying to figure out how to present the complex and massive amount of
information that she knows about her illnesses so she created a one-pager
where she included bits and pieces about her personal and professional lives
fellow listed all the resources and assets that helped her manage her
condition her supportive partner her health trackers and her medical alert
doc she described what symptoms she struggles with and what her current
goals are in terms of managing creoles a CV like that is clear concise and could
be very helpful to doctors this idea that being a patient is no longer going
to be passive objective but an active verb is the key for the future of health
care and frankly to our own well-being just think about it
patients can get certain treatments but actually managing their condition on a
daily basis is their job their input is crucial it’s not enough to just ask
patients in genetic surveys and crash nures that’s called patient centricity
and it’s cute but it’s not enough anymore we have to involve them on the
highest level of decision-making when creating the technology a treatment or
process for them that’s what patient design is and it should work both ways
for example in a dutch hospital an entire department was designed based on
patient suggestions once patients got a seat at a table it turned out they have
very good insights of what the department was lacking and it was these
smallest things but things that can make a difference they asked to have
more privacy more information about their conditions and the treatment and
more games for kids and waiting rooms they asked for better architecture with
a lot of light and friendly colors and around tables instead of the very desk
to have a less confrontational and more balanced patient-doctor relationship and
the future of healthcare should be designed around that balance we people
in healthcare have been like we are developing a new app for truck drivers
and when they are done we decide to get feedback so we reach out to athletes
bankers and artists but not truck drivers because what can they bring to
the table well a lot the FDA has a patient engagement advisory board
already and we encourage every organization from the CDC to the whu-oh
every health insurer pharma company and government to a point a patient advisory
board so they can only embrace patient design patients like e-patient Dave
Lindsay Fallow or members of the WeAreNotWaiting movement can contribute
tremendously to health care and they can actively shape policies regulations and
the basic structures of health care to make it better and we need to start
listening to them now if you like this video and would like to hear more about
patient design and empowered patients please subscribe here

Daniel Yohans

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