Digitisation & Integration of Healthcare Records, why do we lag so far behind?

NewClareman

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NewClareman

Deleted

Hearing today at lunch time with Bryan Dobson, HSE cyber security breach immense, but there was an incredible assertion that old systems don’t impose a realistic threat. Now I know this is 100% illogical unless PCs run entirely on a network of interchanged floppies!

The Black Oil

The departure of Martin Curley was a big loss. His comments were not surprising.

Nor is this.

https://twitter.com/gavreilly/status/1623635178324205568?t=YQny5dIVXG36vgBux78CCw&s=19

Presently I’m in a private hospital where this issue of gaining access to past scans would be more than helpful to the present consultant in making a diagnosis and instituting treatment without too much further delay, where damage done might not be able to be undone, but treatment cannot be instituted without evidence of a pattern of progressive changes appearing on the scans. I used to attend a certain consultant who worked here, but he transferred to full time work at another hospital, and after his transfer my scan records apparently disappeared.

There really should be one universal medical record per person, available to public and private alike, and no one doctor should be in sole possession of a patient’s records.

Dav010

https://www.boards.ie/discussion/comment/120347665#Comment_120347665

Did the Hospital tell you that he took your scans with him, and were they in film/digital form?

https://www.boards.ie/discussion/comment/120347983#Comment_120347983

They actually do not know where they are. When I attended him some years ago he pointed out abnormalities that “needed watching”, but said a year later that later scan showed no changes. Not so long after that he left for another hospital and with his departure went the scans. So nothing for present team to compare with and in my case it’s that bit extra important, being neurological.

I originally saw him in another private hospital where he was based, and where I had a very large file of medical records relating to major surgeries and autoimmune stuff. At the time of attending him in outpatients there he said he didn’t have access to my hospital records even though he worked there, as well as other hospitals, including the one I’m in now. What’s more it seems, that hospital didn’t have access to the scans he ordered on his own behalf and kept them “for himself” for wanting to put it better.

Most of my medical records I have in my cloud location, so to keep my own personal record for the very reason that there is no integrated official system. I requested the records from the hospitals I had attended and my own GP, so have my own very comprehensive record, albeit without those particular scans ordered by that particular doctor.

Dav010

https://www.boards.ie/discussion/comment/120348006#Comment_120348006

Were they digital or film? It would be highly unusual for a Doctor to remove film from a patient chart, or to delete a digital copy. Also, scans must have a prescription, again it would be highly unusual for a Doctor to order a scan for their own use rather than as part of a patient record.

Is what you posted factual, or are you guessing?

https://www.boards.ie/discussion/comment/120348042#Comment_120348042

The scans were taken in a prominent hi-tech hospital, I only have to presume they are digital and of course must be out there somewhere. All I know is what I’ve said that Dr Neurologist in that hospital said “I’ve no access to your general file in this hospital, only the diagnostics I ordered”. Prof General Medicine in my present private hospital said he has no current contact with that Dr Neurologist, and is calling in another “visiting” Dr Neurologist who replaced the latter one in that other hospital. Maybe the “visiting Dr Neurologist” will after all turn out to have access to those scans, but Prof General Medicine is currently working in the dark. He is bemoaning the lack of accessible patient records, and said he depends so much on good patient communication and praised my efforts to keep him filled in with as much info as I can give him. But many patients are relatively vague about their own medical history, or may be suffering an amount of cognitive compromise owing to their condition.

A linked system would circumvent some time-wasting and diagnostic pitfalls. This is my main point, I’m only one example of why it could be so much better.

Dav010

https://www.boards.ie/discussion/comment/120348146#Comment_120348146

Sounds like an IT issue then, rather than a Dr keeping possession of scans. Having centralised data system won’t help if the data can’t be located in the Hospital where the scan was taken.

https://www.boards.ie/discussion/comment/120348204#Comment_120348204

Yeah, very possibly, and a privilege protocol one where that neurologist, as he explained to me back then, that he didn’t have access to all my other records. In that hospital I was attended by a colorectal surgeon, gastroenterologist, rheumatologist, orthopaedic surgeon, general medicine consultant, dermatologist etc, all of whom had access to my master file when making individual diagnoses & ordering treatments. The neurologist seemed to be out on a limb regarding file access privilege, for want of a better way of understanding it.

AndrewJRenko

https://www.boards.ie/discussion/comment/120348215#Comment_120348215

You can make a GDPR access request to each of the parties involved, the hospital, your old consultant, your new consultant. This will give a definitive view of who has what records. If a doctor just lost your records, that sounds like a very serious matter, possibly material for a complaint to the Medical Council.

OscarMIlde

There is an excellent integrated system for sharing digitalised medical images in Ireland. It is called Nimis and is incredibly useful. https://www.ehealthireland.ie/ehealth-functions/acute-delivery/national-integrated-medical-imaging-system-nimis-/

However some hospitals, for reasons I don't really understand have chosen not to use this system which creates issues when patients change hospital. It means the images have to be requested from the previous non-Nimis using hospital prior to review and sent over on disks and then uploaded. It can often delay patient review at MDTs if it isn't done in a timely manner.

I don't understand why hospitals have the option to opt out of Nimis, it shouldn't be allowed.

Dav010

https://www.boards.ie/discussion/comment/120348850#Comment_120348850

We have found this in our Clinic, we get CT scans on discs from some hospitals which are unreadable on our computers while others have no issue. Each radiology Dept seems to have their own software specific to their scanners, some more modern than others.

Dav010

https://www.boards.ie/discussion/comment/120348683#Comment_120348683

A Doctor doesn’t “lose” digital scans, they are not theirs to lose. They are there on the hospital system, they just aren’t linked with the patient file. It should just be a matter of tracing them back to the radiology department.

archermoo

https://www.boards.ie/discussion/comment/120348850#Comment_120348850

NIMIS is the national medical imaging system, but it is only for public hospitals. To the best of my knowledge public hospitals aren't allowed to use any other medical imaging system, at least not without a business case justifying it. I believe that private hospitals can interface with NIMIS, but I couldn't say whether or not any of them do so.

Re medical records, I’m now having a potentially delayed diagnosis on account of a missing record from a private hospital. My GP is furious over it and said private hospitals can easily share records now, but my previous neurologist went to work full time in a major public hospital and my previous MRI brain/spine scan that he ordered has disappeared into the ether. Difficult to know where the fault lies tbh. Not long discharged from private hospital where new neurologist suspects a chronic autoimmune neurological condition but needs follow-up scans before a diagnosis can be made and appropriate treatment commenced. In meantime my mobility declines. It’s very frustrating.

Ger Roe

I keep my own medical records.

I request full copies of every test, make notes on all GP, consultant and hospital visits, or phone calls to and from. Each time I go to any branch of the healthcare sector, GP, consultant, hospital, I print off an update of all related medical interventions since I was last there and I leave it with them.

Ten years ago when I developed a long term condition, I signed an approval form for all my records to be stored online and accessed wherever I needed to go ....this was going to be the new process.......... it never happened. I developed my own system after too many long awaited appointments where a consultant or hospital dept didn't have my files, or they were incomplete, or inaccurate. Some of the appointments were not worth having because there was no medical history available to review. I remember thinking ... this appointment has been over a year in the planning and still there was no coordination exercised to get my full records to the appointed place on the same day. I also accompany my elderly mother to her many appointments and consultations and have experienced the same issues. In one case a long awaited imminent operation was going to be cancelled because the consultant had no information on her underlying conditions. I was able to provided updates and the op went ahead, as scheduled, the following week.

On one occasion a consultant apologised for not having my complete files and asked me to go out to reception and complain. I suggested that he do so, on the basis that he can not do his job properly without the info and on the certainty that I was not the only file failure he comes across regularly. The explanation in that case was that due to storage space issues at the hospital, some of my records were kept off site and they had not been forwarded to the appointment (that I had waited over a year for). There didn't seem to be any appreciation of the potential implications of that systemic failure, once there was an explanation, that was grand.

I have often been thanked by medical staff for the info that I provide to them, which I find bizarre as I am only doing it because I can't trust anyone else to look after my data and interests. How do GPs and consultants work under those circumstances every day? I seems to be just accepted that the system is screwed up and we can only try again. How much time and money is lost through this incompetence?

Brussels Sprout

https://www.boards.ie/discussion/comment/120181828#Comment_120181828

I remember that case and thought that it was perplexing that the union took her side.

Are they obligated to back up any chancer who gets in a huff because they are asked to do their job properly? If not then this is an example where they really should have said no.

Backing people up in cases like this just reflects badly on the union.

https://www.boards.ie/discussion/comment/120399001#Comment_120399001

Amen to everything you said there. I have tried to obtain all records to have access to them in my cloud location, and indeed I have most of my stuff. However there is one crucial bit missing, my last brain MRI which has gone missing since neurologist transferred from part-time in the private hospital I attended to full time in a major public hospital. The subsequent neurologist is unable to locate the scan and cannot make an important diagnosis without it as a crucial part of an MS diagnosis is tracking changes on MRI scans, correlating with symptoms on at least two occasions. My previous neurologist told me about white matter abnormalities, my current neurologist said she sees abnormalities consistent with MS but she would need to see an earlier scan to make a present diagnosis, or else on a follow-up scan. She cannot ethically prescribe any treatment without having made a diagnosis as the wrong treatment could prove disastrous.

In meantime all four limbs are compromised to varying degrees, and now my sense of taste is remarkably altered, and starting to bite my lips and tongue as I’m losing feeling in that area.

AndrewJRenko

https://www.boards.ie/discussion/comment/120399172#Comment_120399172

I don't know how it works to be honest, but I'd have thought that if the unions were obliged to back up every chancer, then we'd have a lot more reports of crazy cases like this. This one seems to be an outlier, however it came about.

Today I had a bit of a shocking experience re medical record issues . Not having heard from SVUH neurology to which my GP had assured he had referred me, I hit into local TDs. The Sinn Féin TD immediately got to work on it and I got a letter back from him today to say to say how he regretted telling me my GP never made a referral in the first place. Just a coincidence I had an appointment with GP today and he repeatedly fumbled over computer system and came up with “I can’t get it to go through, seems to be my system can’t communicate with their system”. I expressed great surprise and indeed annoyance and asked why, it got no answer, just that the systems didn’t work together.

Another coincidence was that medical records from a DLR area private hospital were posted to me after I requested them. GP told me he had got no correspondence from same hospital, but I’m starting to doubt that now. He printed out referral letter and told me to hand it in at next neurology clinic there, and also to go through the huge file from the DLR private hospital and pick out the most relevant bits to photocopy and add to the referral letter.

I’m very well clued into biological/pathological terms and could read about multiple sub-ventricular lesions and ANCA positive status, with suggestion of brain biology to test for autoimmune vasculitis. All the while I get sicker I’m left to read and decipher this stuff as a patient because my GP died f seen to be able to communicate through his system.