As regular readers will know I spent a much too exciting few days in the Royal North Shore Hospital earlier this week!
I escaped a few days ago and yesterday decided to have a look at my My Health Record to see if anything had been uploaded as I result of my admission.
To my surprise, and with no discussion with me, I found a very detailed 8 page Discharge Summary had been uploaded to the My Health Record by not the clinical team but a Hospital Pharmacist.
What I don’t understand is, while the GP is meant to discuss what will be uploaded to a Shared Health Record with the patient there seems to be no such process for Discharge Summaries.
I am not all that concerned that this happened but I suspect that at least 2 patients I shared a room with for a while (one of each had a potentially stigmatising family undisclosed illness and the other of which may have disclosed to their clinicians some potentially problematic past history – and yes I am being vague deliberately) may have hoped for the opportunity to discuss the contents of the upload before it happened.
To me when a hospital pharmacist takes it upon themselves to upload such material with no discussion or warning, and with no consideration of material that might be reasonably be excluded, to avoid possible discrimination or embarrassment, we have moved a little over the top!
I don’t see the Government as being entitled, of right, to all this information without some discussion or consent with the patient.
When a person is mentally competent I see no reason for the upload not to be reviewed by the patient before it is uploaded – even if to allow them to know what is happening and block access later should they choose to. At the very least the patient should be told so they can review what has been uploaded – should they desire. I would have had no idea what had gone one had I not checked.
Much better to have an upload to the nominated GP and not indirectly to some monolithic Government system. Even more so after the Census debacle!
David.
11 comments:
David,
Glad to hear you are getting better, although your experience of the myhealthrecord system might not have been too good for your blood pressure.
It would appear to me that you have experienced something that goes to the very heart (if I could use that term) of the failings of the system.
The myhealthrecord system is a document management system - a glorified filing cabinet. Very little thought has been vested in the quality, relevance, usefulness, timeliness, reliability or manageability of the contents of the documents.
Because these are missing from the system itself, they will need to be performed by the people using the system. IMHO, this is an unrealistic expectation and would be hugely expensive for the health system. GPs and specialists would need to spend inordinate amounts of time examining and correcting data for their patients in a system that is not designed for them to use. It's designed for people who see new patients, not existing patients.
In most cases the data management tasks just won't get done, meaning that the data in the system will be of such poor quality that they will be of no use to anyone. Not patients, not health care professionals, not researchers.
What is of more concern is that health professionals who mistakenly rely on the data in a myhealthrecord system run the risk of doing real harm.
IMHO, the change that is necessary to put all this right is hardly likely to come from the Department of Health or ADHA. As Upton Sinclair said "It is difficult to get a man to understand something when his salary depends on him not understanding it".
Welcome back David. At least your experience of the health system has thrown some illumination on the realities of myhealthrecord system. It's a useful counter to the sugar-coated messages coming from those with a simplistic or vested interest in the system.
Thank you David - re my comment (August 13, 2016 10:42 AM ) on the aushealthit poll number 331 results: Re your current poll - Should The Patient Be Required To Review And Approve A Discharge Summary……
I agree with you David. It is absolutely bizarre – for the hospital pharmacist to be responsible for uploading the patient’s Discharge Summary. Was the pharmacist responsible for the surgical and medical management and treatment of the patient while in hospital? I very much doubt it.
Who is responsible for compiling and approving the Discharge Summary on behalf of the Consultant in Charge – should it not be the Resident or Registrar for the Consultant’s Unit.
BTW is the hospital sending your Discharge Summary to your GP or is the GP now going to be bypassed in favour of the MHR?
More importantly is the Department busy building an increasingly bigger bugger’s muddle? Where are the flow charts and schematics to show where and how information originates and flows to and from?
I find it quite bewildering that lay people, with no understanding of health and clinical information relevance, processes and procedures, should be permitted to be responsible for dictating how such vital health information will be handled.
I had always believed that a hospital Discharge Summary would be sent to the patient’s nominated GP.
Are we not trying to encourage the concept of the Medical Home – coordinated primary care through the patient’s nominated GP? Should it not be the GP in collaboration with the patient who uploads information to the patient’s MHR after having been received and reviewed, and then uploaded to the patient’s MHR by the GP with the patient’s permission?
Whose record is the MHR? Is it the Patient’s Record or is it the Government’s Record about the patient?
If a pharmacist can upload a patient’s hospital Discharge Summary to the MHR it is timely to scrutinize more carefully the statistics on the Government’s My Health Record system.
With 4,000,000 people now registered with My Health Record it is particularly informative to analyse the figures for eprescriptions shown on the Department’s MHR dashboard statistics published to 7 August - https://myhealthrecord.gov.au/internet/mhr/publishing.nsf/Content/news-002
MHR now encompasses:
16% of Australia’s 25 Million population is registered with My Health Record.
3.3 M Prescription documents have been uploaded.
1.1 M Dispense documents have been uploaded.
If medications are meant to be one of, if not, the highest priority applications why are the uptake figures so low?
Under the PBS 240 million prescriptions are dispensed each year. 3.3 million have been uploaded (1.6%) and only 1.1 million have been dispensed (0.5%).
What does this tell us? It tells us that if 16% of the population is registered we should expect to see 38,400,000 dispense documents uploaded. We know that the escript exchanges (eRx and MediSecure) are on most doctor’s desktops and the doctors are sending prescriptions to the script exchanges. We also know that most pharmacists can scan and dispense electronic scripts.
1.1 million is a long way short of 38.4 million!! Which begs the question where are the scripts going? Are they just evaporating into thin air? Why are they not in the MHR?
It would appear that by signing up to the PCEHR you must be giving consent for anyone to upload anything about you!!!
In a medical setting we are required to get consent from the patient to send medical information about their care to other providers involved in their care. I would have thought that a patient should authorize PCEHR uploading, which is a lot different to sending a summary to your GP as we know that access is not granular and it has significant privacy implications.
Do you remember authorizing everyone free reign to upload documents about you, if not they have probably violated privacy laws.
The uploading of discharge summaries without the patient knowing that a summary has been uploaded and without knowing what the summary says has been one of my concerns about the current design of the PCEHR/MyHR.
As a doctor you can understand all or most of the details in the summary of your admission. I expect that once lay people start actually reading their discharge summaries, they will be disturbed by some of what they read, even though it may be of relatively little significance or ill boding. I expect that they will banging on their GP's door wanting to know what this information actually means for them.
It really simple. In Tasmania you give consent by default when you are admitted. You are not asked, and are not informed. You can only opt out if you know that this will happen and express the desire for it not to happen.
It's the old "you don't know what you don't know". This is not informed consent.
It also would not seem to be right or even reasonable?
David.
I suggest that people read the "Health legislation amendment (ehealth) bill 2015, Explanatory memorandum"
It's available for download here:
https://www.legislation.gov.au/Details/C2015B00163/375b5df2-c128-4502-9639-fe232af4e315
The law now states that (subject to the trials - and guess what that really means) the government can create a health record for every Australian and put data into it without requiring the patient's consent. In the trials a patient could opt-out if they so wished.
Health care providers can access that record without requiring consent. It seems that any health care provider can see anyone's myhealthrecord.
If a patient chooses, they can register for access and then they can have a nominated representative and set access controls. Only then can they see which organisations have accessed their myhealthrecord.
In other words, if you have a myhealthrecord and have not registered for access, that record will get populated with discharge summaries, MBS and PBS data and probably any and all tests you have where the testing organisation elects to put that data into your record.
Your myhealthrecord may or may not contain a Shared Health Summary and/or a Consumer Entered Health Summary.
The reason I say may or may not is because of new section 17 in the legislation that allows a health service provider or the system operator to use a healthcare recipient’s healthcare identifier instead of their own.
Section 17: (page 52)
1 A healthcare provider may adopt a healthcare recipient’s, an authorised representative’s or a nominated representative’s healthcare identifier for use as the healthcare provider’s own identifier of the healthcare recipient, the authorised representative or the nominated representative of the healthcare recipient.
2 The System Operator may adopt a healthcare recipient’s, an authorised representative’s or a nominated representative’s healthcare identifier for use as the System Operator’s own identifier for the purposes of the My Health Record system
IANAL but that looks to me as though a healthcare provider and/or the system operator can (in effect) own a patient's myhealthrecord, make changes, add documents etc.
The census debacle was bad enough, the myhealthrecord is far, far worse. IMHO.
And Australians are sleeping through it all.
And if you are wondering where that section 17 is, it's not in the eHealth bill, it's hidden away in the Healthcare Identifiers Act 2010, as amended July, 2016
Its available for downlaod here:
https://www.legislation.gov.au/Details/C2016C00790/06a81054-75c8-4706-b615-36a0af03062c
Step aside, the Department's coming through. So stop complaining there's not a thing anyone can do about it. They have the power and resources - financial, legislative, political, marketing - to do as they want and the public are none the wiser. Patients read the blurb and think it's great. Doctors, hospitals and service providers do as they're told with the help of some financial incentives. It's a fait accompli according to the Department's eHealth strategist.
Re: August 15, 2016 10:55 AM - spot on. For the naive and the gullible it needs to be understood OPT_IN or OPT-OUT is a myth and a farce. Jim Birch. Chair of ADHA made that clear in his presentation at HIC16 when he showed ADHA's Strategy Milestones for Year 2 - "Compulsory Health Records for all Australians".
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