We had a Senate Estimates Community Affairs Committee hearing on Wednesday.
The cast included:
Senators:
Senator Nash
Senator Moore
Senator Smith
Senator Carole Brown
Bureaucrats:
Adjunct Professor Halton
Ms Linda Powell - FAS E-Health
Mr Paul Madden
As usual I have placed the bits I found interesting in italics.
The discussion began about 8.30pm
----- Begin Transcript.
CHAIR: We are now moving on to outcome 10: health system capacity. We have questions beginning with the e-Health review. There are none for chronic disease and treatment.
Senator MOORE: Could I get some guidance. I asked a couple of questions earlier about the diabetes review plan and I am wondering whether this is the right place. Mr Smyth said some of the questions are better asked in this outcome. Is that right? It is too confusing. We will put them on notice and see what happens. One of the answers may be referred to later in the program.
I have questions on the e-Health review. Can you give us an update on how many e-Health records have now been created? Do we have an update?
Prof. Halton : Indeed we do.
Ms Powell : On 26 February there were over 1.4 million consumers who registered for an e-Health record. There were in fact 1,431,097.
Ms Powell : Yes.
Senator MOORE: Put that on notice. But you do keep that data and you can refine it to, say, areas that are getting into the system more quickly than others and whether there are peaks and troughs.
Ms Powell : I have the state breakdown with me. In New South Wales there are 427,238. Victoria has 287,766. Queensland has 293,072. South Australia has 155,731. Western Australia has 117,348. The ACT has 53,782. The Northern Territory has 19,326. Tasmania has 59,479. Should you notice that it does not quite add up, that is because there are a couple of hundred left over who either do not register their state or have multiple states or something like that.
Ms Powell : The promotion that is going on at the moment is primarily through Medicare Locals and through state hospitals. State hospitals in fact have been very active lately, because many of them are starting to load discharge summaries straight into the PCHR, and they are encouraging people to sign up as they are admitted to hospital or as part of their pre-admission procedures.
Senator MOORE: So the particular strategy of linking it to the discharge records has been successful?
Prof. Halton : Absolutely. I watch these numbers on a day-by-day basis. I only said the other day to Mr Madden that it is interesting to watch those numbers. We are seeing high 3,000s and low 4,000s every business day of people who are being registered, and that is coming from the state hospitals starting to connect.
Prof. Halton : There are some private ones, but there is a very conscious, deliberate—
Prof. Halton : Yes.
Senator MOORE: At the last estimates you advised that all public hospitals in Queensland had gone live with e-Health records. You said it is something you are watching every day. Has there been any particular impact in Queensland. I know that there is a strategy in Queensland to do so. Have the Queensland figures shown the same process that you just explained?
Ms Powell : The data is quite clear that most consumer registrations are through assisted registration. The main way that that happens is either through Medicare Locals or through hospitals. Because we have seen continued growth in that area, we think that it is mostly coming from hospitals.
Senator MOORE: Has there been a strategy or a process working with GPs to encourage people to go to these records?
Ms Powell : Yes, there has, through the Medicare Locals, who have been working for quite some time with GPs in that area. We also provided funding to the RACGP to do three projects over the last year and they in turn worked with ACRRM, the Australian College of Rural and Remote Medicine, on some of those projects. We also work collegiately with all of the peak bodies, sharing information, and in the past we have spent quite a bit of effort, together with NETA, speaking at conferences and various other appropriate venues.
Ms Powell : Yes. All of the Medicare Locals are engaged. We have also had specific separate engagement with AMLA, Australian Medicare Local Alliance, and we also had a program where we targeted a number of specialist Medicare Local sites which had particular expertise in this. We set them up as hub sites to provide extra help and support to the Medicare Locals with less expertise in this area.
Senator MOORE: At the last estimates, there were 56 hospitals using the system. Do we have an update on how many more hospitals have taken it up in that time?
Ms Powell : Yes.
Mr Madden : There are 155 public hospitals now using the system.
Senator MOORE: That has been a significant increase in those months. Do we know why in that period? Was there a particular focus in that time?
Mr Madden : Yes. The plans to get the public hospitals connected was through an agreement with all of the states and territories and NETA. Each of those were at different levels of development across the last nine months. I think most of their plans, except for the Northern Territory and Victoria, were connecting by March this year. They are all coming to fruition, with the Northern Territory still in the future and Victoria with only a couple of hospitals rather than the whole state.
Senator MOORE: On notice, how many are not? I do not know how many hospitals there are across the country. If we have 155 up, it would be nice to know how many are not, and perhaps why. We will come back to that at next estimates. Ms Powell, you mentioned specialists. We have doctors and hospitals signed up. Do we know how many specialists have signed up in their own right to encourage their patients onto an e-record and to use that process? They were a particular group when this process was being thought about, in terms of moving records around—that it would be useful for people going in and out of specialist care to have an e-health record. Do we have that data?
Ms Powell : We have data on the number of providers that are registered. There are specialists who would be using the system through hospitals. We do not have any data that suggests specialists on their own have registered. There would be many who are working through hospitals.
Ms Powell : We know how many general practices, pharmacies, hospitals, aged care, residential services and other healthcare providers, which is primarily allied health.
Ms Powell : I think it is every day.
Senator MOORE: On notice, can we please have a month-by-month breakdown of enrolments since its inception until now? Is that the kind of data we can get?
Ms Powell : That is very easy to provide.
Senator MOORE: That would be great. Is it correct that the review into the PCEHR has now been completed? We believe the minister made a statement on 20 December 2013 saying that the review has been completed.
Ms Powell : That is correct.
Senator MOORE: We believe there was an FOI request to get that review. My understanding is that it was refused. Is that correct?
Ms Powell : That is correct. It was not provided because the department did not have the report on that date.
Ms Powell : Yes.
Ms Powell : No.
Senator MOORE: The FOI request is not current; okay. Is it expected—this is for you, Minister, because we know this is in the ministerial purview—the review will be made public?
Senator Nash: I cannot answer that. I am terribly sorry, Senator, but I will certainly make some inquiries for you.
Senator MOORE: You would understand that this committee and particularly some senators in this committee have had a passionate interest in this particular issue. We have been watching this with interest.
Senator Nash: Indeed. And, as you know, Senator, I do understand very well the intent and commitment of this committee.
Senator MOORE: Ms Powell, you said that at the time the FOI was actually put in the department did not have it.
Ms Powell : That is right.
Senator MOORE: Can you tell me what ongoing costs the department holds as an appropriation to administer the PCEHR?
Ms Powell : Funds terminate on 30 June.
Senator MOORE: I would expect, Minister, the answer to the next question is, 'Future funding is part of budget considerations'. Is that the response?
Senator Nash: That is under consideration, obviously, Senator, but I would note that I understand the funding running out on the 30th was due to the previous Labor government. I would stand corrected—
Senator MOORE: That was the end date, in terms of 30 June, that any decision beyond 30 June 'is under consideration as part of budget process.'
Senator Nash: Indeed. But I do note that the reason it runs out on 30 June is because of the previous Labor government.
Senator MOORE: The last question is: has the department provided a brief to the minister on the review?
Prof. Halton : There have been ongoing discussions with the minister in relation to the review, Senator, most certainly.
Senator MOORE: So when the review document is produced and provided to the minister the department often makes further comment and discusses the process.
Prof. Halton : I think the review was provided to the minister first, actually, and obviously once we have received it we have had discussions with the minister about it.
Prof. Halton : I have. I personally have.
Prof. Halton : We would have to that on notice. I cannot actually remember.
Ms Powell : It was done by Richard Royle, Dr Steven Hambleton—
Ms Powell : Yes.
Senator MOORE: We will be waiting for the answers to come back. That will be lovely. Thank you. The data you are going to provide about the history: are those figures public anywhere, in terms of the ongoing scrutiny of the figures that come out on a daily basis? Has there been some compendium of those figures on a website? I could not find it. I'm just checking.
Prof. Halton : We will check that, Senator. The officer thinks that NEHTA might. We certainly get them daily. But we will check.
Prof. Halton : Yes, yes. It is hardly a secret.
CHAIR: I think Senator Smith has one question.
Senator SMITH: Yes. I was just interested in the numbers of people who had signed up to eHealth and how many of them had a clinical record or document attached to that registration. How is that working?
Ms Powell : How that works is: when you sign up you can elect to have a number of records automatically attached to your records. They are administrative records that already exist; so, for example, information drawn off the childhood immunisation register, MBS and PBS data. You can elect to have that added to your record and many people do that. Once you have a record, when you are working with your healthcare provider following a consultation, where it is appropriate that provider may choose to upload some kind of clinical record. You would not expect them to do that on every occasion; only for the sort of information that would be important and useful to share. There is also a large number of clinical records related to medications that are dispensed as well.
Senator SMITH: Of those figures that you shared with the committee, how many have elected to have a document uploaded or attached?
Ms Powell : The documents are actually uploaded by the healthcare provider. So in a consultation if there is a particular diagnosis they might say to the patient, 'This should go on your electronic health record. Would you like to do that?' That is a shared health summary—and discharge summaries. That same thing happens when you go into a hospital they will just check and they will upload it to your health summary. There are 18,744 discharge summaries—that data is a few days old—and 15,326 shared health summaries have been put up.
CHAIR: What proportion is that of the actual people who have registered? It is a fairly small number, isn't it?
Ms Powell : Over 1.4 million people have registered. What I am not telling you, because I do not know, is whether those shared health summaries are separate individuals or the same person. I do have today's figures. There are 19,227 discharge summaries and 15,544 shared health summaries.
Senator SMITH: Going back to your original evidence, when we talked about the quantum of numbers of people that had registered, what quantum were we talking about originally?
Ms Powell : There are 1,431,097 consumers who have registered.
Ms Powell : There are 35,000 shared health summaries attached. They all have records attached to them.
CHAIR: That could be 20 individuals, for all we know.
Mr Madden : The other part is the prescribed and dispensed. A key piece of information from the GP's perspective is prescriptions and dispensed drugs, for which we have 89,000 documents uploaded for dispensed drugs.
CHAIR: If everyone on that list is on 10 medications—
Mr Madden : It could be that one person has more than one.
CHAIR: Yes, I know.
Ms Powell : There are other important pieces of clinical information that consumers put in themselves, like their allergies and a bit of medical history, because there has to be a start date for that as well. There are 32,979 consumer entered health summaries and over 11,000 consumer notes.
Senator SMITH: I would like to understand this a bit more clearly. The 11,000 is not a subset of the 32,000; it is in addition to—
Ms Powell : It could be a subset, but I am not able to tell that.
Senator SMITH: So that I am clear, 1.4 million people have registered but there are less than 100,000 records, because the records do not necessarily relate to a person because a person might have more than one record. Is that correct?
Ms Powell : That is correct insofar as it relates to clinical notes entered by a healthcare provider. The other records, related to pharmaceuticals that have been dispensed, are also in there.
----- End Transcript [20:54]
Here is the direct link
Ms Powell would seem to have taken a few lessons in ‘not answering the question’ from Ms Halton.
The bottom line in PCEHR use is that of 1.4 million people having a record - only 15,000 summaries exist. Thus only 1% of the records that exist have had real clinical input and only 5% of the population are registered.
This far we seem to have spent about $60,000 for each record stored!
As a matter of record there is coverage here:
Slow take up for e-health records
- Fran Foo
- The Australian
- February 27, 2014
Department of Health Secretary Jane Halton speaking at a luncheon in Brisbane. Source: News Corp Australia
A LITTLE over 1 per cent of participants have used the $1 billion taxpayer-funded e-health records system to upload medical information nearly two years after it was launched.
The participation figure is generous at best since the Health Department is in the dark as to the actual number of individuals who have shared health summaries in the system.
Shared health summaries contain medical information such as diagnoses, allergies and medications and patients can have more than one summary.
And here:
E-health record signup boost on back of public hospital push
Summary: A total of 1.4 million Australians have registered for an e-health record as public hospitals have been increasingly encouraging patients to sign up for the service.
Take-up of personally controlled e-health records (PCEHR) in Australia is on the rise, with 1.4 million customers registering for the service as of February 26.
Health Department e-health division first assistant secretary Linda Powell told Senate Estimates last night that 1.4 million consumers have registered since the launch in mid-2012, with the bulk of registrations coming from New South Wales, Victoria, and Queensland.
The drive in take-up, which is up from 900,000 in November last year, was largely due to public hospitals registering patients, she said. A total of 155 public hospitals across Australia are now using the system to upload discharge summaries.
Department secretary Jane Halton said that the public hospitals have been critical in getting customers on board.
-----
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I have to say that after 20 months and all that money this is not a great effort!
David.
24 comments:
Senator SMITH: So that I am clear, 1.4 million people have registered but there are less than 100,000 records, because the records do not necessarily relate to a person because a person might have more than one record. Is that correct?
Ms Powell : That is correct insofar as it relates to clinical notes entered by a healthcare provider. The other records, related to pharmaceuticals that have been dispensed, are also in there.
WELL NOW THAT IS VERY CLEAR IS IT NOT?
Could someone more intelligent that I please explain what this actually means?!!!!!!
Why hard earned good NET TAXPAYERS' money (yes Ms Halton, you benefit far more from the taxpayer funded trough than you will ever dream of contributing!) is wasted on these morons, is way beyond the comprehension and reasoning of and " reasonable man" test!
It could be used on countless and easily imaginable far better purposes with far greater societal and economic benefit than these insipid wastes of space could ever put their little minds to accomplishing, and that is the tragic opportunity cost of this whole eHealth unadulterated fiasco...
Our democratic system of governance is broken beyond what looks like any semblance of reasonable repair!
Hang ‘em high Marshal, hang ‘em high.
I wish DOHA itself could use the right terminology for their system. As far as I understand it each person that signs up (registers) has one record only, i.e. a PCEHR. (Unless they also have a pseudonymous record, but lets put that aside for the moment). Within each registered person's record there may be a number of documents, some of which are shared health summaries and some of which may specify prescriptions and/or dispense events. DOHA reckon that they have 1.4 million people registered - which means they have 1.4 million records. What they are unable to report is how many of these registrations are just registrations, and don't have one or more shared health summaries and/or disc rage summaries in their records yet. Funny that, they should be able to get Accenture (who provide and support the PCEHR system) to generate a report showing this. It is a simple SQL query. Well, it is if you have a decent system design.
David, thsese selected comments do remind me of the statement "lies, damned lies and statistics". Early in my informatics days an individual from the NSW Dept of Health said we produce the statistics that the current government 'wants people to read/see'.
What concerns me is that this Senate game (with the existing champions NEHTA)has very little to do with the e-health system improving patient care. There is nothing I can see about clinical decision support, CPOE, quality and outcomes and as the NEHTA site states the PCEHR is a "document repository" not an interoperable, standardised e-health system. Sadly we seem to be going nowhere fast.
I have some questions about who can see a patient's health record and what logging there is.
As I understand it, the PCEHR, only provides a summary of a patient's health record and pointers to the "real" documents.
If a health care professional accesses a patient's PCEHR record, this will be logged. If the health care professional then goes to the source system (their hospital, GP's or specialist's system), then this is not logged and the patient cannot find out who has seen this part of a patient's health record.
So, in reality the PCEHR is only one (partial) view of a patient's eHealth record, most of which is not personally controlled, is un-logged and is probably uncontrolled - depending on the individual system.
Have I got this correct?
>As I understand it, the PCEHR, only provides a summary of a patient's health record and pointers to the "real" documents.
The PCEHR can store documents that are sent to it from Health Practitioners, other sources (such as Medicare, ERX, Medisecure, etc), plus some information that can be entered by the patient through the portal.
The Shared Health Summary, which is one of the documents that can be uploaded to the PCEHR, shows a set of information which is defined in the SHS requirements.
All access to the PCEHR is logged, and the patient can see who has accessed it, and what they have accessed.
If the Health Practitioner went to the source system to see a document, then the logging would be whatever the source system does. They can not access the source system through the PCEHR in any shape or form.
A PCEHR can have many types of documents including Shared Health Summaries, Prescription records, dispense records, referral letters, specialist letters, event summaries, and some other that dont come to mind.
Benard, I dont think you have it correct.
"As I understand it, the PCEHR, only provides a summary of a patient's health record and pointers to the "real" documents."
No - the pCEHR can do either - it can store documents, or store references to them, if the documents are located in conformant repositories. At the moment, the only comformant repository is the NPDR.
"If a health care professional accesses a patient's PCEHR record, this will be logged."
yes, and this applies to conformant repositories too
"If the health care professional then goes to the source system (their hospital, GP's or specialist's system), then this is not logged and the patient cannot find out who has seen this part of a patient's health record."
yes - if they don't use the pcEHR (e.g. get on the phone to source provider), the pcEHR doesn't log the use.
"So, in reality the PCEHR is only one (partial) view of a patient's eHealth record, most of which is not personally controlled, is un-logged and is probably uncontrolled - depending on the individual system."
Yes, the information that exists today, under existing rules in a variety of systems around the country. I'm pretty sure you don't think that this all should be gotten rid of.
"Have I got this correct?"
no. both details and implications are incorrect. You didn't really think that something so obvious would be missed?
That's a lot of confusing answers (can have, yeses and nos) to my (probably confusing) questions.
Let's start again, this time with one question.
Is there a single system that contains all a patient's health records and which logs all access?
"Is there a single system that contains all a patient's health records and which logs all access?"
no. It's spread across 100s of systems across the country.
Perhaps you mean:
"Is there a single system that contains all a patient's pcEHR documents and which logs all access?"
To which the answer is, well, that depends on how you define "system". Taking a user-level functional view, then the answer is yes, though there's some provisos, in that logging of some events is per-institution not per-person (there's reasons that this is appropriate, and reasons it's a problem too). Also, once a document is downloaded from the pcEHR, and printed, the pcEHR cannot track it's further usage. Finally, the pathology industry proposal creates an alternative access pathway, where the pathology companies would log access, not the pcEHR, but this is not implemented yet, and it's not clear whether it will be.
From
www.ehealth.gov.au/internet/ehealth/publishing.nsf/content/home
"A personally controlled eHealth record is a secure online summary of your health information. You control what goes into it, and who is allowed to access it.
Your eHealth record allows you and your doctors, hospitals and other healthcare providers to view and share your health information to provide you with the best possible care.
An eHealth record gives you more control over your health information than ever before, placing you at the centre of Australia’s health system"
While all this may be correct (I'm not sure of the last sentence, see below), it does not seem to tell the full story.
These statements may also be accurate:
The PCEHR is one of many eHealth record systems.
The PCEHR a summary system which exists in addition to other health record systems.
The PCEHR may contain documents which are also stored in other systems. In the case of differences the xxx system takes precedence. (I do not know which system xxx is, or even if it is specified)
You can control, to some extent, who can see your PCEHR data. The extent to which you can control access to the other systems is variable and not documented in a single place.
Access to the PCEHR is logged, at some level. Other health record systems may or may not be logged. You may or may not be permitted to view the logs.
The legislation under which the PCEHR operates has no impact on other health record systems. These are subject to different state or territory legislation. They are all covered by national privacy legislation.
If there is incorrect information in other health record systems, this might be duplicated in the PCEHR. Responsibility for the correctness of your health information is undefined. Correcting invalid health information is an undefined process.
The PCEHR provides no additional control over your existing health information.
The Federal government has little or no access to existing health record systems. The PCEHR allows the Federal government to access summary health information on any individual who has created a record in the system and who has populated it with his or her health information.
The Federal government does not deliver any health outcomes. These are all delivered by state and territory organisations.
Please let me know if any of these statements are inaccurate, could be better phrased or leave out relevant information.
"placing you at the centre of Australia’s health system"
Marketing claim
"The PCEHR is one of many eHealth record systems."
correct
"The PCEHR is a summary system which exists in addition to other health record systems."
correct
"The PCEHR may contain documents which are also stored in other systems."
correct
"In the case of differences the xxx system takes precedence."
I don't think there is any statement like this. In the case of difference, consult the source and/or the patient
"You can control, to some extent, who can see your PCEHR data."
correct
"The extent to which you can control access to the other systems is variable and not documented in a single place."
well, I guess, though I'd more say: "you have no control over access in any other system" though I suppose there's a few other patient controlled systems. I presume they're new though
"Access to the PCEHR is logged, at some level. Other health record systems may or may not be logged. You may or may not be permitted to view the logs."
Correct, though I think there would be very few that aren't logged - there are many legal/audit reasons why the log is needed, and reviewing the log for various reasons is a common thing to do
"The legislation under which the PCEHR operates has no impact on other health record systems."
well, it impacts on them by creating a need for interfacing. But it doesn't require a change in their core behaviour directly
"These are subject to different state or territory legislation. They are all covered by national privacy legislation."
correct, though there are endless amounts of federal regulations to consider as well.
"If there is incorrect information in other health record systems, this might be duplicated in the PCEHR."
yes
"Responsibility for the correctness of your health information is undefined."
I'm not sure that undefined is right. The author is responsible for correctness, though they are allowed to choose to put up incorrect information in consultation with the patient. They might have to explain why in court, but it's not prohibited. The patient has some responsibility too, especially if they provided the wrong information in the first place.
"Correcting invalid health information is an undefined process."
yes, though you could consult the author. It's up to the author to decide whether they care. Your local GP is probably going to care more than medicare.
"The PCEHR provides no additional control over your existing health information."
That is correct
"The Federal government has little or no access to existing health record systems."
I think it has lots of access, but it's all piece meal
"The PCEHR allows the Federal government to access summary health information on any individual who has created a record in the system and who has populated it with his or her health information."
umm, define "access summary health information". Does that mean, the pcEHR stores and makes it available to you? or does it mean, they can go off and use it for other purposes? Right now, the government reserves the IP right to do other things with it (for future purposes), but I don't believe that there's any policy approval for it do anything but make it available to you and your carers. Though I might be wrong...
"The Federal government does not deliver any health outcomes."
what, other than medicare, closing the gap, federally funded hospitals, the military and veterans care systems, the university systems, etc?
The statement "The PCEHR allows the Federal government to access summary health information on any individual who has created a record in the system and who has populated it with his or her health information."
Is incorrect and I am not suggesting that the government is empowered to do this.
In the Personally Controlled Electronic Health Records Act 2012
it has "Subdivision B—Collection, use and disclosure other than in accordance with access control"
This defines who, other than the consumer and their healthcare workers, can see what data. It is limited to:
> management of PCEHR system
> in the case of a serious threat
> (as) authorised by law
> with consumer’s consent
> by a consumer
> for indemnity cover
> to courts and tribunals
> law enforcement purposes, etc.
This last one is interesting:
The System Operator is authorised to use or disclose health information included in a consumer’s PCEHR if the System Operator reasonably believes that the use or disclosure is reasonably necessary for one or more of the following things done by, or on behalf of, an enforcement body:
(a) the prevention, detection, investigation, prosecution or punishment of criminal offences, breaches of a law imposing a penalty or sanction or breaches of a prescribed law;
(b) the enforcement of laws relating to the confiscation of the proceeds of crime;
(c) the protection of the public revenue;
(d) the prevention, detection, investigation or remedying of seriously improper conduct or prescribed conduct;
(e) the preparation for, or conduct of, proceedings before any court or tribunal, or implementation of the orders of a court or tribunal.
There is also a section permitting a minister to make rules about certain things:
Division 7—PCEHR Rules, regulations and other instruments
109 Minister may make PCEHR Rules
which includes:
(7A) The PCEHR Rules may specify requirements with which the System Operator and other entities must comply in relation to the preparation and provision of de-identified data for research or public health purposes.
One other issue, completeness:
Is the PCEHR a complete summary of all a patient's health information?
Are there any parameters or requirements with respect to new information inserted into other health record systems being available in the PCEHR?
Are these statements correct?
"The PCEHR is not guaranteed to be a complete summary of all a patient's health information."
"Some information in other health record systems may take an unspecified time to be reflected in the PCEHR; other information may never appear in the PCEHR"
"A patient may decide that certain information should never appear in their PCEHR. There is no indication in the PCEHR that this information exists."
I have not used the term consumer (which is the term used in the legislation), because IMHO, the patient is not a consumer; (s)he is the subject of the information. The healthcare worker consumes (uses) the information.
I'd say that the PCEHR is guaranteed NOT to be a complete summary of all of a patient's health information - even if that was constrained to electronically-available information. Is there any country in the world with an eHealth system that's sufficiently 'joined-up' to produce such a comprehensive summary? Then there's the fact that at least a quarter of Australian residents were born overseas to consider - lots more dots to join there!
It is probably unrealistic to expect the PCEHR to contain everything about a patient. In fact it would probably be far too much to wade through and would slow things down.
Has anyone asked healthcare workers just how much, and what, information they need in order to better do their jobs?
Is there a consensus?
Is it related to a particular time period (e.g. the last six months)?. To certain illnesses/diseases (e.g. someone had leukemia five years ago; German Measles as a child)?
Does/can the PCEHR contain (only) the information that healthcare workers most value?
Is such an expectation realistic?
"Does/can the PCEHR contain (only) the information that healthcare workers most value?"
Yes - that is, the information that comes from other sources / past history. If it doesn't, it's not for lack of trying to consult with healthcare workers, but note that there opinions on this matter are very diverse.
On your other points:
"The PCEHR is not guaranteed to be a complete summary of all a patient's health information."
What, exactly, is a "complete summary". isn't than an oxymoron?
"Some information in other health record systems may take an unspecified time to be reflected in the PCEHR; other information may never appear in the PCEHR"
true. Though you're vague as to why it would be an unspecified time. I would expect the delay to be due to human factors, not system factors.
"A patient may decide that certain information should never appear in their PCEHR. There is no indication in the PCEHR that this information exists."
That's almost correct. It's certainly the intent. But there's nothing you can do to suppress the fact that you've suppressed information, and a many healthcare workers can make inferences from the gaps. This is well known problem with regard to suppressing information
I asked "Does/can the PCEHR contain (only) the information that healthcare workers most value?"
K's answer is somewhat ambiguous. "Yes, but..."
Won't the PCEHR just gather information over time? Is there any process in place or proposed that culls irrelevant (to healthcare workers) information. Which of course, would make it less relevant/valuable to researchers. So who's the consumer again?
A "complete summary" is a summary of all documents/information.
"Some information in other health record systems may take an unspecified time ..."
By which I mean that (AFAIK) there are no performance criteria that state that there is a maximum time within which relevant information must be provided to the PCEHR.
"K's answer is somewhat ambiguous. "Yes, but...""
Indeed, because that's the goal, but I'm not sure how well it's been executed. In fact, I'm not sure how well you could define it. These are inherent limitations in the task
"Won't the PCEHR just gather information over time? Is there any process in place or proposed that culls irrelevant (to healthcare workers) information. "
no, It will become less obvious, but it will only go away if the patient decides so ("patient controlled")
"A "complete summary" is a summary of all documents/information."
oh. well, no. There's no path to a summary of all documents/information (phew). Maybe there's a path towards being a summary for every event though. What's a complete summary then?
"By which I mean that (AFAIK) there are no performance criteria that state that there is a maximum time within which relevant information must be provided to the PCEHR."
No. Cause no clinician would sign up to that. But realistically, except for discharge summaries, which might be months late, it'll be same day/next day or not at all.
I was hoping to be able to establish a set of statements that describe the PCEHR, but that doesn't seem possible.
If it can't be described, it's difficult to put a value against the cost.
So what exactly has the taxpayer got for their $1billion?
"Diddly squat" would be a fairly accurate appraisal and characterisation of what the taxpayer has actually received for their over $1B in wasted expense!
While we’re at it, we spent in excess of $5.8M on the Benefits Realisation Partner(s) so maybe they are best placed and well-funded to answer your question specifically Bernhard by publishing their findings, and in doing so, kill two birds with one stone and demonstrate the taxpayer funds they received were not also a waste of money along with everything else heavily expended in this ehealth morass…
Well that has been an interesting conversation.
'K' who it seems must have worked closely on the PCEHR system, and
Bernard who wants to know more about the PCEHR system
Between the two of them it seems that those that know and those that are trying to know are both confused.
If the information is not complete (e.g. missing vital information in relation to medications or allergies) and the information is not timely (e.g. a summary that is over 6 months old), then one has to wonder if it is useful at all?
"If the information is not complete (e.g. missing vital information in relation to medications or allergies)"
Nothing I said should be taken to mean that incomplete means missing information with regard to medications or allergies - I'm not sure where this connection was made
"and the information is not timely (e.g. a summary that is over 6 months old), then one has to wonder if it is useful at all?"
I'm pretty sure that lots of existing discharge recipients wonder that too ;-) (though I don't think many get to be 6 months late)
And yes, I worked in the pcEHR a bit. I read the specifications too.
The confusion lies only in what the PCEHR is. I think we all have a pretty good idea of what it isn't. It isn't what the government says it is.
To say nothing of the lack of clarity as to who it is actually for - as far as I can see it is not really designed to suit either patients or clinicians.
David.
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