We have some robust systems where patients can choose to not share data from the GP systems into the DHB systems
We offer “opt out”
date range
specific tests
both proactive and retroactive
and allow them to reverse it (ie it’s kept in the database but flagged and thus not surfaced via APIs)
We do NOT show any indication to the DHBs that it’s opted off (long conversation I know but that is our choice)
We have had a handful of patient’s pick this up over the 15 years of implementation
We offer certain specific DHB services to not share with the rest of the DHBs
we have had some nasty clinical situation arise due to this with slow opening up of sharing
some still do not share - and they have often surveyed their patient and have a clear message they want to remain “opted out” in this case
We do NOT offer the patient a clean way to opt out of DHB data being sent to the GP
we can put it as “GP none” and it does not push
but any GP can come into the system and would be aware of the document
How do the rest of you manage the request from a patient to not follow the “standard” DHB send out to GP policy?
It would be good for communication around this to go both ways in all these situations and be consistently approached
It does help to know - even at a ‘flag general alert’ ‘this patient has opted off communication sharing’ or something like that so that providers (whether primary or secondary care) can know that information may be missing when they look into a portal
Just quietly the biggest problem we have in primary care around data sharing is failing to get information from secondary care - eg discharge summaries not coming/ being sent to the wrong GP etc - and being able to log into a portal to see clinic letters/op notes is amazingly useful (currently via Clinical Workstation at Waikato - here’s hoping that the eSpace project still allows GP access in a similar way!)
This is the ultimate Butter Side Battle we have a very strong clinical voice - who was instrumental in getting the first regional repository working - to not have any indication that the patient has opted out
The idea being
if there is an indication they have opted out - the onus shifts from the patient BACK to the clinician - now the clinician knows they have opted out, there is a duty of care to ask what was opted out
That puts a catch 22 onto the patient
Sometimes knowing what is missing is as prejudicial/more prejudicial to the patient than just having the result there (although that is part of the informed consent to opt out that was hinted at)
The need to know “data is missing” is a redundant need - no solution is complete - we should never assume it is
an astute clinician will usually be able to work out what is missing - based on what else is there - it’s actually very hard to remove all links/hints to things in our “dysintegrated”, document centric systems.
Let’s see how people vote (more to get people involved than to restart the butter battle
Should we have an indication (of any kind) that information has been deliberately withheld from the computer record?
Tricky! I think “a” flag of some kind that my view is not the same as someone else’s (from another DHB / service) is helpful if you are trying to have a conversation with another clinician from another service. I don’t necessarily “care” that people may wish to withdraw certain information, it’s more that if I am trying to make sense of a situation, I’d pick up the phone and speak to the GP / another health professional, who may or may not be aware that the set of records I am seeing is not what they are seeing. And given that, as @NathanK said, >95% of patients won’t be opposed to information sharing, the assumption that we are dealing with the record of the “same degree of completeness” is too easy to make.
At the moment, it’s safe to say that I have no idea what’s in the GP’s records and the GP and I both know this when I ring from clinic. Once information sharing is enabled, a different set of assumptions will replace the current. Maybe it’s my “English is not my native language” hang-up coming to the fore here, but I daresay I am not the only one who tries to think about how to frame a conversation to make sure it’s efficient before picking up the phone?
Omigosh no! When I ring in to the hospital I am all too aware of time limitations - both at the hospital end and also my end and try to frame my conversation in an efficient way.
I agree that we need to remember that the vast majority of patients assume we are already sharing all the information and are happy for it to happen.
I think even in the presence of more complete record sharing we still have to be careful not to confuse the map with the territory - records will still be missing/absent/corrupted for whatever reason and we still have to deal with the patient in front of us
Also the previous records can actually create bias and diagnostic error in shaping clinicians’ viewpoints and stopping us from thinking more broadly in case of differential diagnoses…
An interesting legal question, really. In NZ there are two acts which cover the topic. On one hand - for the sake of providing medical care, a doctor is allowed to receive medical file (doctor to doctor). Consent is not mentioned… However, a different act requires clients’ consent.
Good discussion can be found here:
And on the clinical side: personally, I would see lack of consent as an invitation for a conversation with my client. I would assume that in most cases the lack of consent might stem on a biased / paranoid perception which might be mitigated with some clarification.
Hi,
As an ED clinician I see a subgroup of patients who have a vested interest in me not knowing crucial aspects of their history. However, the patient isn’t paying me- the taxpayer does, and I have an obligation to provide good value for money to the taxpayer. It’s one reason we don’t have the opioid epidemic in NZ. Patients who don’t wish information shared need to pay for the cost of their episode of care; otherwise we end up repeating investigations, prescriptions, or procedures.
I do have stories of people presenting to ED recurrently with abdominal pain, omitting to mention for instance their sexual health history, and in some cases getting unnecessary operations. Prior to 2012 we didn’t have access to Mental Health notes; on gaining access the extent of some frequent attender’s problems expanded significantly, with important alterations in their care. If the patient decides what is best for them, we will have a series of addicts in no time. If we wish to act based on good medical practice, then sharing the information on patients is 100% essential. Patients who wish to influence decisions by withholding information need to pay for their healthcare, not be subsidised by the taxpayer, and the clinician looking after them needs to be aware they are trying to drive with one eye covered.
Most of the time, the reason the patient doesn’t want things documented in their medical record is because they don’t believe people who have access will use it appropriately. Breaches of patient confidentiality are an employment issue, and should be dealt with as such. Denying access to information is just creating risk for the patient- who will get inappropriate care - and the caring clinicians, who will provide the wrong treatment. In particular with a shared regional portal, we are creating the clinical expectation that the information required to provide care is all available in one spot. 99% fulfillment of that expectation does lead to disaster.
I love ED clinicians - you have a much more realistic perspective on the gritty realities of the human condition. Certainly more so than us in the Anaesthesia ivory tower.
Privacy vs public responsibility vs protection from oneself is a curly area, where the realms of politics / philosophy / religion intersect with clinical realities. It is not a place with easy answers; at least not ones we all agree on.
Making data sharing a condition of funding isn’t something that I had considered. It does raise the somewhat ugly possibility of only the wealthy being able to afford ‘privacy’ for sensitive issues, which makes me quite uncomfortable.
