1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

Article on patient access to health records

Discussion in 'Other Health News and Research' started by MeSci, Dec 21, 2013.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,822
    Likes:
    4,586
    Cornwall, UK
    From New England Journal of Medicine (NEJM) 4th December at http://www.nejm.org/doi/full/10.1056/NEJMp1310132?query=TOC

     
  2. Snowdrop

    Snowdrop Senior Member

    Messages:
    539
    Likes:
    844
    Toronto
    Sounds good until I start to think of some dystopian future where our input to our records gets tagged as psychiatric ramblings.
    Wait did I say future?
    Note: my abilities are at a low even for me. I read only the beginning and ending few paragraphs.
     
  3. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,195
    Sth Australia
    Here in Sth Australia where I are, they are doing a new thing (only just started) which one can have medical records in which you have a password for and any doctor you want to be able to, can also read and record in these records. Its accessable online I think.

    I so far have a fear of signing onto that as Im thinking over time as Im sure most are going to join this as it will make medical stuff easier with not each time having to go throu ones health things with each new dr one sees, but I believe it will become the expectation of any dr one sees to be given permission to able to see this record. If one didnt allow when it gets to the point that everyone is using this new system, the dr will know you are trying to hide the medical record for some reason.

    My concerns are that some of us get diagnosed wrongly with mental health things due to the lack of knowledge out there of the seriousness of ME/CFS and the issues around this even once the right diagnoses is finally diagnosed, the old can be hard to get removed from the records and one may not want every doctor one sees to see this.. hence my concern. eg I got diagnosed with borderline personality disorder as my Aspergers was missed for a long time and the fact I also probably had PTSD over my ME was missed.

    One who has ME/CFS also may not want every doctor one goes too, to know one has ME/CFS due to the altered attitudes we often face.

    So what will happen once 90%+ of the community adopts this open record thing? and we will have doctors looking at us suspeciously when they ask for our passwords so they can view our medical record and we say no... (I need to get the past wrong diagnoses taken off my records but cant seem to do it as normal GPs wont go against what past psychs said even if they missed things at the time and Ive since been diagnosed by autism specialists).
     
  4. alex3619

    alex3619 Senior Member

    Messages:
    7,662
    Likes:
    12,422
    Logan, Queensland, Australia
    The future in the UK ... if it were in 1990. Once a psych label gets put on a centralized record it is very hard to remove. Otherwise I agree that transparent records, with the right to patient access, is a very good step.
     

See more popular forum discussions.

Share This Page