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Why do you think they should be owned by patients? I’m not disagreeing with you, it might work but I would appreciate a more pursuasive argument. There are arg

Why do you think they should be owned by patients? I’m not disagreeing with you, it might work but I would appreciate a more pursuasive argument. There are arguments against. Any text written is copyright of the writer, not the person it is written about. Why should the patient own the copyright of that text? Data access is not the same thing as ownership. Additionally, this is not the case for other data held about someone. If you use a lawyer, they own (and don’t provide access to) the notes they make. Same for any other service provider.

tcbawo 8y ago
Treating medicine as a generic, traditional business has done nothing positive for society. There has been a lack of innovation for fear of breaking things, but things are seeming more broken all the time. Maybe we'll start to see some traction.
- Engineering-MD 8y ago
  I would agree with you, but you don’t really give an argument to say how the proposed alternative is better or the optimal solution.
  - tcbawo 8y ago
    I'm not advocating for patient ownership of medical records. I'm not in the field, so I don't know whether that makes sense. I do know that profit motives tend to backfire in this industry as everyone tries to get theirs before the house of cards comes falling down.
    - Engineering-MD 8y ago
      Fair response. I am in the UK, so it’s not profit orientated in any case. It is moving that way to a certain degree, but clinical decisions are based more on what’s good for the patient and in a defensive manner. The opposite effect is in place: reduce costs wherever possible (don’t do tests unless it will change management, don’t treat unless it will improve the patient’s life).
      - tcbawo 8y ago
        I'd much rather have some base safety net. As it stands in the US, no amount of capital is sufficient to protect yourself against a lifetime of medical expenses. This is a perverse incentive that injects greed, selfishness, and sometimes desperation into our everyday lives.
maxxxxx 8y ago
The patient should own the records because he/she pays for it. And to avoid repeated unnecessary tests and procedures information has to stay with the patient, not with the doctor.
- Engineering-MD 8y ago
  patients pay for care, not for records. If you employ a photographer for a wedding, they often insist on keeping the copyright of the photos. You have the right to use them personally, but the photographer retains the copyright. And to avoid repeated tests, it means that this information must be shared between different healthcare organisations. There is an argument against. Ownership implies the ability to do with the data as you wish, including removing certain parts or withholding others. This could lead to issues where a patients wants a test which is not indicated, and by providing edited records, clinicians may be misled. Similarly, would it be acceptable to delete information referring to a current HUV/Hep C or TB infection? And what about psychiatric patients? Sometimes patients lack insight into their condition, particular in psychosis and delusions. This can persist after acute episodes, where they deny they were unwell during the episode. These patients could then remove anything referring to this section, making future care much more difficult. Finally, medical records also refer to cases where there are legal issues. They may refer to suspicions of child abuse, or the expressed intent of a patient to go kill another. This information should not be blocked by difficulties with patients owning the data.

tcbawo 8y ago

Treating medicine as a generic, traditional business has done nothing positive for society. There has been a lack of innovation for fear of breaking things, but things are seeming more broken all the time. Maybe we'll start to see some traction.

Engineering-MD 8y ago
I would agree with you, but you don’t really give an argument to say how the proposed alternative is better or the optimal solution.
- tcbawo 8y ago
  I'm not advocating for patient ownership of medical records. I'm not in the field, so I don't know whether that makes sense. I do know that profit motives tend to backfire in this industry as everyone tries to get theirs before the house of cards comes falling down.
  - Engineering-MD 8y ago
    Fair response. I am in the UK, so it’s not profit orientated in any case. It is moving that way to a certain degree, but clinical decisions are based more on what’s good for the patient and in a defensive manner. The opposite effect is in place: reduce costs wherever possible (don’t do tests unless it will change management, don’t treat unless it will improve the patient’s life).
    - tcbawo 8y ago
      I'd much rather have some base safety net. As it stands in the US, no amount of capital is sufficient to protect yourself against a lifetime of medical expenses. This is a perverse incentive that injects greed, selfishness, and sometimes desperation into our everyday lives.

maxxxxx 8y ago

The patient should own the records because he/she pays for it. And to avoid repeated unnecessary tests and procedures information has to stay with the patient, not with the doctor.

Engineering-MD 8y ago
patients pay for care, not for records. If you employ a photographer for a wedding, they often insist on keeping the copyright of the photos. You have the right to use them personally, but the photographer retains the copyright. And to avoid repeated tests, it means that this information must be shared between different healthcare organisations. There is an argument against. Ownership implies the ability to do with the data as you wish, including removing certain parts or withholding others. This could lead to issues where a patients wants a test which is not indicated, and by providing edited records, clinicians may be misled. Similarly, would it be acceptable to delete information referring to a current HUV/Hep C or TB infection? And what about psychiatric patients? Sometimes patients lack insight into their condition, particular in psychosis and delusions. This can persist after acute episodes, where they deny they were unwell during the episode. These patients could then remove anything referring to this section, making future care much more difficult. Finally, medical records also refer to cases where there are legal issues. They may refer to suspicions of child abuse, or the expressed intent of a patient to go kill another. This information should not be blocked by difficulties with patients owning the data.