The #EHR4U chat – a summary

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!

  1. #EHR4U Q 1 yes we should have access, same as banking they don’t hid most of your bank detail

  2. @MariaHagglund I want access to my medical records. Also believe that it is the patient’s right! #EHR4U
  3. @Isadurra @MariaHagglund Yes I would like to have access for self-management and easy access to my nxt caregivers on my consent #EHR4U
  4. 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.

  5. #EHR4U I see many instances in Healthcare profession that they can only see part of the patients history. Pt always filling in other parts
  6. @TinyTonyH yes, patients often act as information carriers in fragmented healthcare – safety issue? #ehr4u
  7. Another important issue that was brought up was the problem of
    misunderstandings and disagreements between patient and healthcare
  8. @Hanife_Krasniqi have you asked for a paper version of your records? and if so, was it “correct” according to you? #EHR4U
  9. @Isadurra 1. Yes. It was shocking. Misconceptions occurred all too often. my care was negatively affected due to this! #EHR4U #eHealth
  10. @Hanife_Krasniqi @Isadurra #EHR4U I have heard this from many patients misconceptions does lead to negativity from profession

  11. 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.

  12. @Isadurra #EHR4U If Patient had full control of records, would make it easier to change doctor. We are now in a mobile workforce.

  13. 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.

  14. @Isadurra @Hanife_Krasniqi #EHR4U Doctors say its to lessen the risk of sensitive information which might endanger pts health. (1/2)
  15. @Isadurra @Hanife_Krasniqi #EHR4U (2/2) But I believe it is the loss of control over the patient. Needs a radical rethink of culture
  16. 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!

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