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Ingrid Brindle: a patient perspective on shared electronic health records

Ingrid Brindle: a patient perspective on shared electronic health records

Our health is our lifetime’s work. It is
the most important project we will ever do, isn’t it? When we are born, you know, we
get this random assortment of stuff. We get eyes and bones and blood and guts and all
sorts of things and it is our awesome responsibility to turn that into the best human machine that
we possibly can. We are going to need support and we are going to need the information and
the instruction manual to go with it. As a patient, I think the average patient can spend
something like two hours a year in front of a clinician. I mean, I am a bit of a chronic
case so let’s say I spend 24 hours a year in front of one clinician or another. That
is still 364 days of the year that I am home alone and that is when all the important health
decisions get made. It happens when I am deciding whether to have a glass of wine or a cup of
tea; go up the stairs; take the lift; go out and exercise; don’t. That is when I need
information to enable me to make the best possible fist of those health decisions I
make to improve my health outcomes. I am at Haughton Thornley Medical Centre who
provide me with the most fantastic set of resources for information and help. The first
thing is we have a terrific website. Patients and families have been able to have access
to their online GP records. I have had access to mine since 2006. Remember, I can take all
my GP information with me everywhere I go, at home and abroad, with just two passwords.
It gives me great confidence in my situation wherever I am. It also gives me a tremendous
amount of independence and a tremendous amount of security. When I click onto my records,
I get a summary. The summary gives me an opportunity to choose current problems; current medication;
recent consultations; test results; recent letters; allergies and immunisations. So if I was to choose summary, then I would
get a record of my current problems; a list of my significant events. As you can imagine,
this is invaluable for when I have to tell my story again and again and again. I have
monthly blood tests and immuno-suppressants. The doctor will put a comment on when it is
up there so it might say, ‘high but getting better,’ or something like that. I know
the doctor has seen it; I know they will get in touch with me if there is anything that
needs to happen, but if there isn’t anything that needs to happen, they don’t need to
contact me and I don’t need to contact them. I can see any letter that has gone out of
the practice or comes into the practice that is related to me. Now that is absolutely great
because if somebody says, ‘I will refer you’ for something, well I know they have
because I can see that it has gone. Last week I was at cardiology and the cardiologist said
that my notes had turned up and were ‘that big’ and ‘not that big’ and there was
a big chunk of stuff missing and there was some information he needed. So I got out my
mobile phone and showed him the information on my mobile phone! I can look at records of consultations that
I have had with my GP. That is absolutely terrific. This is about safe medicine. If
clinicians are sending people out of their consulting rooms knowing that people are only
going to retain 10 per cent, then it may be a good idea to support those patients by allowing
them to read a record of the consultation so that I can look at it afterwards; I can
make sure I understand what has happened; I can make sure I understand what medication
I am supposed to be taking; what my role is and what happens next, and what the doctor
is going to do next. Every time I go online to look at my blood test results and don’t
have to ring the practice to see if they are there, and all the time I am doing all these
things myself online I am not contacting the practice. To me, empowering patients and giving
them control over their situation so that they understand when they are making all these
hundreds of health choices that they make every day, to me, giving people that information
and allowing them to make a good ‘fist’ of the most important project in their life,
to me that is a no-brainer. I cannot see how you can argue it the other
way round; that patients are going to thrive in an environment where they are not allowed
information and where they are not given support. If we think of ourselves as a team, rather
than you doing stuff to us, I think that is where the exciting progress is, and I think
patients are the biggest under-used resource in the NHS actually. I am sure people have
said that to you. Okay, thanks.

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