I wrote a blog post a couple of days ago called An invitation to participate describing our decision to use twitter to try to engage with a broader public before, during and hopefully after our workshop at Medinfo2013. The workshop is called “Experiences of Novel e-Health Services for Patients – Pros, Cons and Future Challenges” and naturally the twitter chat hoped to gather opinions on getting online access to electronic health records (EHR) – hence the hashtag #EHR4U.
Monday the 19th of August we held a one hour twitter chat. Me and my two colleagues Isabella Scandurra (@isadurra) and Rose-Mharie Åhlfeldt (RoseMharie2) took active parts in the discussion. 3 more persons were actively engaged in the discussion, but we hope to raise the number to participants as we continue live-tweeting from the workshop tomorrow. Here I will give a brief summary of the contents of the discussion.
All participants clearly expressed that they wanted access – in fact the participants considered it a patient right!
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#EHR4U Q 1 yes we should have access, same as banking they don’t hid most of your bank detail
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@MariaHagglund I want access to my medical records. Also believe that it is the patient’s right!
#EHR4U
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Some concerns however, was that even if you gained access your data
it would probably be scattered throughout different systems and
difficult to get an overview of. This is of course an important issue
when providing patients access to their health information – how can it
be integrated into one consistent view?
This fragmentation of information was also brought up as an important reason why patients need to have access – since they are the main information carrier between
different care providers. If you don’t have access to your information
you will likely forget important information when repeating it to the
next healthcare professional.
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#EHR4U I see many instances in Healthcare profession that they can only see part of the patients history. Pt always filling in other parts
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@TinyTonyH yes, patients often act as information carriers in fragmented healthcare – safety issue?
#ehr4u
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Another important issue that was brought up was the problem of
misunderstandings and disagreements between patient and healthcare
professionals.
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@Hanife_Krasniqi have you asked for a paper version of your records? and if so, was it “correct” according to you?
#EHR4U
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@Isadurra 1. Yes. It was shocking. Misconceptions occurred all too often. my care was negatively affected due to this!
#EHR4U #eHealth
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In situations as these, it was also considered a benefit to have
access to your records online so that you could more easily change to a
different healthcare provider. So, having access to your data could also
provide a sense of freedom – I have the same information as my
healthcare provider, and I can choose to take this information with me
to a different provider.
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@Isadurra #EHR4U If Patient had full control of records, would make it easier to change doctor. We are now in a mobile workforce.
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We also discussed that different levels of access and/or functionality could be needed. Some persons may prefer a brief summary in layman terms, whereas others want full access to all data. We need to provide flexible solutions – patients are not a homogeneous group.
And finally we touched on why it is so difficult to realize these
changes. Cultural aspects was brought up, difficulties in changes work
processes, and power balance.
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So – ending on this perhaps not so positive quote, I hope that the
discussion will continue at #EHR4U. Tomorrow, Thursday 22nd August, we
will have our workshop here at Medinfo2013. I will be tweeting
throughout the event and if you have any interesting comments or input –
please join the discussion!
Participatory eHealth 