4 ms·

The fact that GPs are acting as some kind of custodians for this data isn't it also the same problem? This data should belong to their owners: the patients.

by 627467 5y ago

Silhouette 5y ago
There are quite a few problems with that in the case of medical records. Some of this information may be urgently needed at a time when the patient is not capable of giving informed consent for its disclosure or does not have it immediately available. Some of the information may be vital to the future healthcare of the patient and would cause serious harm to them if it were lost. And in more of a more morally grey area, some information might be harmful to the patient if they had it. For example, consider the implications of bluntly disclosing various mental health diagnoses to someone who doesn't fully understand what they mean and whose condition means they won't necessarily respond rationally or beneficially to the information. In this case, having the records kept locally by exactly one organisation that is run by medical professionals who are bound by strong professional ethics seems like a reasonable policy.
- psychlops 5y ago
  Let's not forget that there are quite a few problems with other people and organizations taking default ownership of patients data. No system will be perfect and because there are a marginal cases where it fails shouldn't therefore push responsibility to "professionals".
- pjc50 5y ago
  I don't think the NHS actually has the right to keep information from you simply on the "might be harmful" rationale, but I don't think that particular data protection fight has happened yet.
  - Silhouette 5y ago
    My instinct has always said that transparency should prevail on this kind of issue. However, as it happens, I have previously discussed this exact subject with multiple friends who work in clinical healthcare roles, and I have to acknowledge that they have almost invariably disagreed with my instinct. Given that I'm fairly sure some of them have personally treated people with serious mental health problems, I tend to defer to their expertise on this one. I don't know what the law actually is (and perhaps none of us do since as you say the issue doesn't seem to have been tested yet) but if the medical experts are almost universally of the same opinion then I probably know what the law should be.
- jarofgreen 5y ago
  The keeping information private one is interesting, and more complex than it looks. I know of a case of someone who was having problems with NHS, requested her records, found some very nasty comments, complained, had her care switched to another team, and did so much better.
  - deleted 5y ago
    [deleted]
- 627467 5y ago
  > medical professionals who are bound by strong professional ethics "Licensed professionals are infalable and always know better"
- wolverine876 5y ago
  This creates strawpeople of ideal government and an ideal medical industry, and gives all power and trust to them. We need to find solutions within the realities of government and industry power and effectiveness. Also, there is no reason people can't make this decision for themselves. Who are you to tell me what I must do with my personal medical records? I may decide those risks are worthwhile.
- 1996 5y ago
  > There are quite a few problems with that in the case of medical records. Only if you have a paternalistic view > Some of this information may be urgently needed at a time when the patient is not capable of giving informed consent for its disclosure or does not have it immediately available. What if I accept the risk I may die due to bad luck/odd circumstances to still refuse the information being handled out by anyone but me? > Some of the information may be vital to the future healthcare of the patient and would cause serious harm to them if it were lost. Likewise, what if I accept future risks? I have more skin in the game from losing my records than an hospital losing them anyway. > And in more of a more morally grey area, some information might be harmful to the patient if they had it. Then what about I refuse having the information, in exchange of the information also being unavailable to anyone else? Many people here seem to have the view "more information is good" but not collecting it in the first place seems better to me. Hence I do no healthcare in the US, only in SE Asia where most services are available in English and Chinese anyway.
- IG_Semmelweiss 5y ago
  No 1) preauthorization directive 2) encrypted backups 3) no. The real reason is doctors are really scare of opening medical records and the multitude of clerical errors in them Copy pasting in the US is so rampant one has to wonder how much liability is dormant in the different EMRs
- amaccuish 5y ago
  I think transparancy is the answer. In Estonia, if someone's medical record is viewed, it is recorded irrevocably. If there is suspicion that this access was not authorised or out of reach, the state itself will prosecute if you don't want to.

The fact that GPs are acting as some kind of custodians for this data isn't it also the same problem? This data should belong to their owners: the patients.

by 627467 5y ago

The fact that GPs are acting as some kind of custodians for this data isn't it also the same problem? This data should belong to their owners: the patients.

Silhouette 5y ago

There are quite a few problems with that in the case of medical records. Some of this information may be urgently needed at a time when the patient is not capable of giving informed consent for its disclosure or does not have it immediately available. Some of the information may be vital to the future healthcare of the patient and would cause serious harm to them if it were lost. And in more of a more morally grey area, some information might be harmful to the patient if they had it. For example, consider the implications of bluntly disclosing various mental health diagnoses to someone who doesn't fully understand what they mean and whose condition means they won't necessarily respond rationally or beneficially to the information. In this case, having the records kept locally by exactly one organisation that is run by medical professionals who are bound by strong professional ethics seems like a reasonable policy.

psychlops 5y ago
Let's not forget that there are quite a few problems with other people and organizations taking default ownership of patients data. No system will be perfect and because there are a marginal cases where it fails shouldn't therefore push responsibility to "professionals".
pjc50 5y ago
I don't think the NHS actually has the right to keep information from you simply on the "might be harmful" rationale, but I don't think that particular data protection fight has happened yet.
- Silhouette 5y ago
  My instinct has always said that transparency should prevail on this kind of issue. However, as it happens, I have previously discussed this exact subject with multiple friends who work in clinical healthcare roles, and I have to acknowledge that they have almost invariably disagreed with my instinct. Given that I'm fairly sure some of them have personally treated people with serious mental health problems, I tend to defer to their expertise on this one. I don't know what the law actually is (and perhaps none of us do since as you say the issue doesn't seem to have been tested yet) but if the medical experts are almost universally of the same opinion then I probably know what the law should be.
jarofgreen 5y ago
The keeping information private one is interesting, and more complex than it looks. I know of a case of someone who was having problems with NHS, requested her records, found some very nasty comments, complained, had her care switched to another team, and did so much better.
- deleted 5y ago
  [deleted]
627467 5y ago
> medical professionals who are bound by strong professional ethics "Licensed professionals are infalable and always know better"
wolverine876 5y ago
This creates strawpeople of ideal government and an ideal medical industry, and gives all power and trust to them. We need to find solutions within the realities of government and industry power and effectiveness. Also, there is no reason people can't make this decision for themselves. Who are you to tell me what I must do with my personal medical records? I may decide those risks are worthwhile.
1996 5y ago
> There are quite a few problems with that in the case of medical records. Only if you have a paternalistic view > Some of this information may be urgently needed at a time when the patient is not capable of giving informed consent for its disclosure or does not have it immediately available. What if I accept the risk I may die due to bad luck/odd circumstances to still refuse the information being handled out by anyone but me? > Some of the information may be vital to the future healthcare of the patient and would cause serious harm to them if it were lost. Likewise, what if I accept future risks? I have more skin in the game from losing my records than an hospital losing them anyway. > And in more of a more morally grey area, some information might be harmful to the patient if they had it. Then what about I refuse having the information, in exchange of the information also being unavailable to anyone else? Many people here seem to have the view "more information is good" but not collecting it in the first place seems better to me. Hence I do no healthcare in the US, only in SE Asia where most services are available in English and Chinese anyway.
IG_Semmelweiss 5y ago
No 1) preauthorization directive 2) encrypted backups 3) no. The real reason is doctors are really scare of opening medical records and the multitude of clerical errors in them Copy pasting in the US is so rampant one has to wonder how much liability is dormant in the different EMRs
amaccuish 5y ago
I think transparancy is the answer. In Estonia, if someone's medical record is viewed, it is recorded irrevocably. If there is suspicion that this access was not authorised or out of reach, the state itself will prosecute if you don't want to.