This appeared a few days ago.
No harm in patients seeing results before GP: expert
30 October, 2014
There is "no evidence" patients will be harmed by reading pathology results on their PCEHR before speaking with their GP, a leading Australian e-health expert says.
This month, Australian Doctor revealed the plan to automatically upload pathology and diagnostic imaging results to the PCEHR after seven days — irrespective of whether the patient had been seen by their GP.
The upgrade is being sold as a major step forward in the clinical relevance of the moribund system.
But there are fears that patients will find out they have serious conditions, such as melonoma or chlamydia, by reading through the files on the PCEHR before being contacted by their GP.
The Australaisan College of Health Informatics reviewed research on various systems that allow patients access to results, systems mainly based in the US.
Published in Pulse IT, the review said: "Despite the enthusiasm for direct patient access to laboratory and imaging results, the evidence from existing evaluations of existing patient portals and their impact on the safety, effectiveness and quality of patient care is limited and inconclusive.
"There are major questions about how patients use their record and respond to their results alongside concerns about the impact on authority and responsibility within the current patient-doctor relationship."
And it said caution should be taken in generalising from the results of studies on US system.
But the informatics college said it is endorsing the seven-day delay model for the PCEHR system, which will be rolled out from next year.
Lots more here:
There are 18 comments following the article which was posted only a few days ago. Reading dispassionately I would have to suggest that the reaction to this article was fairly negative.
The article was triggered by an ACHI Press release which can be found here:
The key paragraphs are as follows:
“ACHI's review found that there was no evidence demonstrating harm and in fact early evidence to suggest some consumer benefits from access to pathology and diagnostic imaging results. "The College acknowledges however the clinical cultural issues, and endorses the suggested seven day delay," A/Prof Pearce said. The current proposal has results being posted after a seven day delay, allowing clinicians time to re-view and contact patients before they get direct access.
Dr Bain noted that the review acknowledged the concerns about the effects direct access might have on GPs" traditional role as gatekeepers and the anxiety that could be experienced by patients reading results before their busy GPs have been able to curate them. "However, for clinicians with modern health informatics systems, this should not represent a barrier to access. The alternative, that all results should be clinically curated, represents an unacceptable work load on busy GPs."
"Our review shows patients value access, but are lacking on information as to why and what patient out -comes might be," A/Prof Pearce said. "Accordingly, ACHI supports the proposed model, with appropriate safeguards. Allowing consumers direct access to pathology results is new technology and must be framed in the context of improving the quality and safety of care.
"This means working with consumers to understand access and health literacy issues as well as targeting those with chronic diseases, where regular pathology is part of the care plan."
The full review report is available on the ACHI website, www.ACHI.org.au.”
----- End Extract
I have to say I disagree profoundly with this.
To me what should happen is when tests are requested the patient should be asked if they want automatic access to the results. If they do, and time is taken to explain what the tests might mean, then early and quick access makes perfect sense. If not then the results should only be posted to the PCEHR once reviewed by the requesting clinician.
Taking both the patient and the clinician out of the loop - and posting automatically is just nonsense.
This is especially so when the ACHI review makes the clear point that "Despite the enthusiasm for direct patient access to laboratory and imaging results, the evidence from existing evaluations of existing patient portals and their impact on the safety, effectiveness and quality of patient care is limited and inconclusive. “
Just how a recommendation of this sort is arrived at in the absence of firm evidence of significant benefit is beyond me!
It only takes on suicide of one patient - following misinterpretation of a result they have not asked to have access to - as almost happened with a patient seeing the report of a brain scan - and the finger pointing and blame game would be a wonder to behold.
Bottom line to me is get the patient to agree to access and then risks of harm are dramatically reduced - otherwise try and make the PCEHR sufficiently useable that GP curation of results is easy, quick and painless.
Patient consent and involvement - and not a fixed time limit to post results - is what matters here!
All this haste is, I suspect, is a last gasp, rear guard action to make the PCEHR relevant and this auto-posting without explicit consent approach is badly flawed in my view.
David.
Surely the ability to upload automatically could depend on the test type or the outcome of a test? Some test results are routine and patients will know what to expect. Others would require consultation.
ReplyDeleteIs this possible?
That is exactly why the system of disclosure of results needs to be based on what the patient wants - in advance!
ReplyDeleteDavid.
Surely they could engage more broadly and openly on important issues like this??instead of bringing together a small closed group, and then use people looking to get back in favour as a mask that they have clinical and consumer buyin. What a shameful and hopeless bunch we have at present
ReplyDeleteThe assumption that this is being driven to achive some sort of ehealth benifits and clinical effeciency is wholly incorrect. This is a perfect example of a few aging technologist, gullabile executives chasing milestones for features delivered, masterly having their strings pulled by those after milestone payments.
ReplyDeleteTime the stopped and lets get back towards design through engagement and consensus.
Surely this has been tested and proved to work without impeding or changing clinical workflows, after all NEHTA has clinically validated data and a cutting edge testing and training environment. Just a lot of fuss and noise by a small minority
ReplyDelete(1) The proposal currently allows for patients to withdraw consent to upload at any stage
ReplyDelete(2) it is accepted practice that significant unexpected results would be communicated directly to the referrer (typically by phone) at the time of reporting, quite apart from any activity in the PCEHR. A week seems a reasonable period of time for the referrer to then contact the patient.
(3) re Anonymous of 8:33 pm - the same test - even the same test outcome - will have different significances in different circumstances. Can't see how these complications could be dealt with reliably by some software algorithm. Hence point (1) above.
I think you hit the nail on the head with 'make the PCEHR sufficiently useable that GP curation of results is easy, quick and painless.' That is, in my opinion, the one key factor that will hold back the uptake of any 'new' system, particularly when it comes to technology.
ReplyDeleteAnon said:
ReplyDelete"(1) The proposal currently allows for patients to withdraw consent to upload at any stage."
That misses my point - I am suggesting opt in for results - this is suggesting opt out and is wrong IMVHO.
David.
Yet another politically driven metric that will come with a press release on the large number of results in the PCEHR. (swap meaningless metric number of registration for clinical results loaded metric)
ReplyDeleteDoes the press release come with the proposal? lol
There are so many things wrong with automatically placing diagnostic results in the PCEHR record visible to the patient it is difficult to know where to start. Here goes...
ReplyDeleteFirtly, part of the justification for the ACHI recommendation is that there is no evidence demonstrating harm. To me, this has all of the hallmarks of argumentum ad ignorantiam or appeal to ignorance (in which ignorance stands for "lack of evidence to the contrary"). It is false logic. It asserts that a proposition is true because it has not yet been proven false (or vice versa).
The burden of proof justifying this change in process sits with those making the change. Relying on absence of evidence is grossly inadequate. The imposition of a 7 day delay is a cop out.
Secondly, the 'achilles heel' of the PCEHR is patient safety. THe PCEHR is unsafe. This change further reduces patient safety.
My suggestion is to upload the results to the PCEHR and only make the contents visible to the patient AFTER the GP has reviewed the results, discussed them with the patient and has specifically authorised their visibility on the PCEHR. Nothing less is acceptable.
There's 2 obvious hypotheticals:
ReplyDelete- patient gets an unexpected result in the absence of counselling, and significant harm (up to suicide) occurs
- patient doesn't get an result/report in a timely fashion, and significant harm (up to death) occurs
As far as I know, there's no reason to doubt that either would occur. In fact, we know that the second happens now (personal experience for me plenty of times, including patient death). Is this a numbers game? Is it simply about net lowest harm? Or perhaps other non-safety/patient factors are actually driving the discussion?
Just a reminder to everyone: changing the system to increase safety often has the outcome that new kinds of unsafe outcomes are created; these are much more costly than any unsafe behaviours that go away (see http://www.healthintersections.com.au/?p=1673). I think this is very much in evidence in this discussion. Btw, my post talks about having systems to deal with side-effects. I do not see any such systems proposed here?
btw, the idea of a 7 day delay effectively quashes the timeliness issue completely. It seems to me that this demonstrates that if you set out to make everyone happy, you very often end up making everyone unhappy
A random thought reading the comments:
ReplyDeleteSurely it is up to the proponents of automatic uploads is not only safe but to provide some evidence it would actually make a positive difference.
AFAIK there is no evidence to support that. Happy to be advised otherwise.
David.
The disappointing thing is that there is no focus of the reliable delivery of results to doctors and the ability to do proper decision support in the clinical setting. Instead we have a display version of results going to patients when we know we have significant issues in the standards compliance of results going to the person who ordered the tests.
ReplyDeleteIf you want to avoid errors and improve the quality of care by providers then giving them adequate quality and the ability to do a proper analysis of results including proper decision support would be a high priority. To suggest that things are being missed and sending results to the patient is the solution when you have not ensured that providers get the results in a timely reliable way is quite a twisted view of the world. When you have not addressed the primary use of results why would you spend so much time, money and energy on a very average quality secondary usage. Its quite unfair on providers, they need to be sure they see it first.
As one of the authors of the article being quoted I believe the message of the article has been missed. The conclusion we reached was that there was no good evidence for either benefit or harm. The work that would answer these questions has not been done.
ReplyDeleteAlthough our paper focused on recent literature, because it included large reviews we believe this is reflective of the literature more generally. We have not, however, conducted a full systematic review.
In our review we did not set out to answer the question 'was it a good idea to make all pathology results available in the PCEHR with just a time delay for patient viewing?'. If we did I for one would have answered quite differently. There is anecdotal evidence of harm being done with unsupported release of pathology reports containing bad news.
Nowhere in the world, that I am aware of, is it the practice to release all pathology reports with just a time delay. I have confirmed with those directly involved in the last few weeks that this is the case in the US and Denmark which are quoted as places where it is supposed to happen. In those countries there are mechanisms in place that allow reports to be withheld until the patient has been consulted and some tests that are never routinely published.
It should be remembered in this discussion that patients have had access to their pathology results from private laboratories in Australia for more than a decade by law and much longer than that by practice. The current discussions are not about patient access to pathology reports, they are about what is proper policy for posting pathology reports to the PCEHR.
Furthermore the issue of a report not being attended to raised by Grahame is an issue that has better solutions than publication in the PCEHR in my view.
How does DoH ensure:
ReplyDelete1. Appropriate protection of patient privacy and
2. Preservation of the existing patient- treating provider relationship?
Under the proposed direct upload model in conjunction with the existing default PCEHR consumer standing consent model and settings, there is a risk that any person in any organisation that has access to the PCEHR could potentially access patient's test reports. Given the manner in which most Australians have been registered (assisted registration) it is highly likely that few would be aware that the default setting is to “allow any provider involved in may healthcare (whatever that actually means) to access my PCEHR”. This creates:
1. A privacy concern in that privacy breeches will inevitably occur sooner or later which will be accelerated by the uploading of volumes of diagnostic reports and
2. A clinical safety concern in that in some circumstances advice may be provided which may not always be contextual. Furthermore, some patients might determine that a normal or negative result means that no follow-up is required. Both scenarios could result in the patient failing to return to the requesting provider for ongoing care (the likelihood of which will increase if the $7 co-payment becomes a reality).
DoH should be more focused on developing processes to strengthen systems to ensure that all requesters (especially those within the tertiary sector) are reviewing the results of tests ordered and following up accordingly. There has been little to no focus on this requirement which one might consider to be a core requirement and a core duty of care (the primary use case). Direct uploading of volumes of human un-curated diagnostic reports to the PCEHR will not in itself solve the issue of tests that are not followed up and will create a new medico-legal concern in that providers will have no visibility re which test reports have been reviewed.
If the requirement was solely about providing consumers with their results (which as you say is already available) then:
1. The seven day delay is not required as it can be bypassed by direct contact with the authoring laboratory or provider and
2. PCEHR report access should be initially restricted to the consumer and the requestor only with the consumer having the capacity to decide who to release them to, on an as required basis.
@Michael - there are other solutions; which do you think are candidates for the best solution?
ReplyDelete"(1) The proposal currently allows for patients to withdraw consent to upload at any stage"
ReplyDeleteWhen would that (withdrawal of consent) happen? If I am sent to a pathology provider with a paper order form to have my blood taken for testing, will they ask for my consent for upload to the PCEHR at that point? Can I ring them the next day and change my mind? And if I say no, and the result goes back to my GP, then will the GP's system know that I don't want that particular result posted to the PCEHR? It's all too confusing for the poor consumer. As a consumer I will need to understand the data flows and triggers, and interface specifications, the time delays etc before I can understand what, if and when anything is posted!
The PC in PCEHR stands for "Personally Controlled". It's up to you to control who can see your record, what goes onto your record, and the accuracy of the data in your record. Just get on with it.
ReplyDeleteExcept you can't because the government has created a half baked system. You can't control who sees what, only what certain organisations can see stuff. Stuff automatically gets put onto it - you may be able to remove some of it later. And there's no clear or obvious way of correcting bad data, even if you can work out if it's wrong.
Apart from those little things, everything is fine. Everyone is rushing to get one and doctors really love it and can't get enough of it.
This is a reality only in the minds of NEHTA and DOH.
Automatic upload of diagnostic results to the PCEHR does nothing to address the number one problem in diagnostic result distribution - lack of review and followup by requesters!
ReplyDeleteA big problem in hospitals with large clinical teams requesting a multitude of tests and and to compound this problem a decreasing length of patient stay resulting in patients leaving hospital before some results are delivered, let alone reviewed.
In answer to Grahame: The problem of non-review of pathology reports which is largely a hospital problem was reported on by the AIHI group (Westbrook Georgiou et al) from work at the Mater in Brisbane. They followed up with a paper showing how it was substantially improved. If you insist that the reports be viewed before discharge you go a long to fixing it. If you then include any later pathology in a revised discharge that goes to the GP you pretty much solve the problem.
ReplyDeleteFor community pathology the way to fix a much smaller problem (because of the design of receiving systems and practice accreditation) is to have an application level acknowledgement that shows it has been read going back to the pathology practice. The laboratory would follow-up exceptions because it is in their interests and there is some case law that says it will cost them if they don't. The barrier to this in the past has been report recipients accepting that this level of scrutiny is OK.
Michael, all these are system solutions which are good, but they are all impersonal. I'm getting plenty of anecdotal evidence that timely follow up is not happening in the community sense. It may well be that pathology is faithfully communicating to the practice system, and it's acknowledging, but the patient isn't getting the feedback they need from the clinician. I've experienced that myself - the GP promised to get back to us with my daughter's UTI results, and I know the lab turns them round, but we didn't hear back until they had become irrelevant. Does that mean they are ok? It's not good enough to say that the lab communicating with the clinician closes the loop.
ReplyDeleteGrahame, I don't say things are perfect or that PCEHR mightn't be a good way of providing a copy of a report to a patient (although it is diminished by time delay). It is about where you what you would to reduce most harm for the least cost. Did you ask either the GP or pathology practice for the report in your case when it was overdue? Is there a better GP practice nearby?
ReplyDeleteI agree that there's a question about the least amount of harm. But I don't hear that being the discussion. Instead, most people are jumping at shadows which happen to align with some group's apparent interest.
ReplyDeleteAs for my case - it wasn't our normal GP, but they're not open 24/7 (sadly). But it's not just my case - I hear about this enough to tell me that there *is* a problem. I don't know how big a problem it is.
Holding reports for 7 days seems like an unhappy compromise to me. But that's the nature of compromises, right?
I heard privately that KP send all reports to patients first, and it's a net improvement. But I'm not aware of any published work on the outcomes of that.
At what point does sanity prevail and we say when there is evidence all this will actually improve the quality and safety of care we will do it - and until then we will seek decent evidence.
ReplyDeleteThis debate is nonsense. Until PCEHR Results can be shown to be better than the present system we all need to get over it!
David.
David, some decision has to be made. The status quo is still a decision.
ReplyDelete“It may well be that pathology is faithfully communicating to the practice system, and it's acknowledging, but the patient isn't getting the feedback they need from the clinician.”
ReplyDeleteThis is a very common situation. The system is reactive, not proactive. There are many cases where a test result has not been followed up by a clinician, and something could have been done to save the patient. Hospitals and GPs have been sued, and insurance companies and governments have paid big damages.
The PCEHR is another passive system, and so will not help this situation unless the patient/carer is being proactive about their own care. Most people will not be checking their record, in fact many will never log in to their record.
There are anecdotal stories of patient harm because no one acts on a result and there are anecdotal reports of patient harm because they see a result and draw the wrong conclusion.
ReplyDeleteI don't see any justification for spending a billion dollars to change the workflow without a shred of evidence to say its going to be better.
I do think its important that providers are reliably receiving results and those results can be transferred between providers securely and rapidly and be displayed accurately and seen in context with other results. The whole practice of health is based on reliable information transfer and display, by paper, fax, word of mouth or via eHealth means.
eHealth has the potential to improve care by allowing providers to access data in a more timely manner with better context and background information on the patient. The PCEHR does none of this and is a huge distraction from actually enabling reliable information transfer between providers, which must surely be the first priority. If that's working well then providing results to patients is a small step. NEHTA has done nothing to improve this and has in fact distracted the entire eHealth industry from the job at hand and in doing so is causing harm.
Not content to rearrange the deck chairs on the Titanic, they insist that the design of the deck chair is wrong and want a meeting to discuss that, and then someone gives them funding to do it!!!
If Australia doesn't embrace these long needed reforms of giving patients access to their diagnostic test results, we'll fall further behind our leading overseas counterparts.
ReplyDeleteIn France, it has been common for patients to have immediate access to diagnostic test results for many years, backed by legislation going back to 1999.
Even in the USA, Meaningful Use Stage 2 requirements stipulate a maximum of 4 days delay:
"50% of all visits within 24 hours (pending information, such as lab results, should be available to patients within 4 days of becoming available to Eligible Providers)"
http://www.ascrs.org/sites/default/files/resources/Update_on_Stage_2_MU_FINAL%20Requirements.pdf
I'd urge all who care about this issue to read the three articles starting at http://www.diagnosticimaging.com/pacs-and-informatics/patient-portals-should-patients-have-access-images-reports
The second page of part 2 of this article contains discussion of timing and the experiences of 3 significant trials of patient access to diagnostic tests, carried out in the US recently. To quote from just one experience:-
'Zwanger-Pesiri, which built their portal in-house, initially had a three day delay to give the referring doctor time to read the report and contact the patient. Mendelsohn later decreased that to a one day delay, out of concern for proactive patients who might face a weekend without results, or if their doctors were out of town. The change from three to one day led to no negative feedback. Now the facility provides results available the instant the report is signed.'
All I can see in Australia are a pathologically patronising and parochial professions unwilling and incapable of embracing basic evidence to improve practice.
Consumers are crying out for this reform!
I am not sure many Hospitals have the time and resources to go back and review and amend Discharge Summaries on the receipt of diagnostics results after patient discharge unless the pathology is significant or the volume of results is small.
ReplyDeleteAs for community laboratories being responsible for referrer reading/reviewing of results - that is the referrers job.
At the end of the day, history shows that underneath all this is some sort of incentive, consumer groups, colleges, or whatever guide name they slap on to themselves, they are all just after money, putting me as a consumer in control is rubbish in the politiest terms. I would watch carefully at what changing deals are made amoungst the so called caring stakeholders.
ReplyDeleteWhy else would solutions be implemented so early in design, without appropriate validation, its not about health care its about wealth care
"All I can see in Australia are a pathologically patronising and parochial professions unwilling and incapable of embracing basic evidence to improve practice."
ReplyDeleteI think that is a bit harsh Eric. The urls you provided are no evidence in an evidence based sense that I can see. What about "First, do no harm"
The solution to the lack of a timely response is to find another doctor and to improve the electronic transfer of results so that results can be accessed more easily. I know that electronic access to results in Queensland private and public hospitals is terrible or non existent and especially for clinical results is often still by fax.
I do not think clinicians, in general, are opposed to patients having access to results, but they expect that their need to access the results has first priority. Interpreting lab and radiology results is not trivial and while I am sure the occasional patient is capable of doing so the vast majority will just alarm themselves on abnormals, especially if the doctor has not even seen the result as yet and is unable to offer an interpretation.
It seems having failed to provide decent clinical systems the powers that be have decided to just send results to the patients as a pdf and say "see problem solved". The problem is not solved and until be have enabled decent eHeath for the people charged with looking after the patient and interpreting the results its crazy to pretend that sending results to patients is a fix.
Do you have any academic reviews of the plus and minus side of sending results directly to the patients with enabling providers to vet the results first??
I ask my doctor to please arrange to have a copy of all test results sent to me when they are sent to him. On those occasions when he forgets to write cc to patient on the request form I write it on myself.
ReplyDeleteWithout fail I receive a copy of my results. They are very interesting; sometimes disconcerting but I can talk about them with my doctor at the next appointment o that is not a problem.
Its not that hard.
Grahame, KP do not send send results carte blanche to patients without review and the one paper on the subject from KP had a very limited study group for a short period with test results that no-one would expect to cause alarm or harm. EPIC has lots of controls available to determine what does and doesn't go to the patient portal and they are well used by the big players in the US.
ReplyDeleteHello all,
ReplyDeleteBelow is an email I sent to the HISA and ACHI list when this first came up. From the comments thus far it may be of interest. I should say after having completed the review we were to undertake which has now been published I have revised my view to 'there is little good evidence of either benefit or harm from making pathology reports available to patients'
"I write in response to Louise's email around the process for getting pathology into the PCEHR. I'll restrict my remarks to pathology because DI is a little different in that the patient and the radiologist can be in the same room together where for the pathologist that is infrequent (although it does happen routinely for some procedures). I hasten to add the remarks here are mine and not an official RCPA position.
First, at the invitation last week of Chris Bain on behalf of ACHI (for PES BER), a review of pathology informatics literature is underway now for publishing in Pulse IT which will go to this subject. The review is being led by Glenn Edwards with assistance from Andrew Georgiou and me. The conversation here is certainly helping and we hope everyone has received notice of this from Chris with a followup coming on how to contribute.
There are a number of questions in the issue being raised by Louise. Is it beneficial for patients to have their pathology reports? Is there a benefit in having the report explained and support provided especially in the event of a report that has life altering consequences for the individual and/or other family members? Can harm occur when this advice or support is not given? Is the way that pathology reports are to be provided to patients best achieved by putting them into the PCEHR? Are there circumstances where a patient on knowing the results would prefer that a report not ever be loaded into a Government database that undertakes to keep data for 130 years and may be available to parents or guardians for the young or for that matter anyone involved in their care and well into the future when they may forget it is there?
If the answer to any of the questions raised by me above means that a capacity to delay or not send a report to the PCEHR is required, then a mechanism to achieve that must be found. It is that which has been under discussion at the community pathology (ie not hospital) in the PCEHR consultations so far. It has not been about 'Whether doctor knows best?' or 'Are patients up to getting the facts?' which might be an alternate take on the issue as it was raised.
Part 2
ReplyDelete"Coming back to the questions raised by me above, I believe there is evidence supporting a 'yes' to the first question - is it beneficial for patients to have their pathology reports? - both from a safety and participation point of view, and some of that evidence has been provided with the papers in response to Louise's email.
Some caution, however, is required in interpreting these, often US based papers, in the context of pathology in Australia and the PCEHR.
While there is debate now in the US about the right of patients to have their pathology reports, since 21st December 2001 (*) patients in Australia have had right of access to their pathology results (except in a small number of circumstances described in the law). This was under what was then called the National Privacy Principal 6. I attach the AAPP policy and patient brochure from the time which were published on the web and distributed widely (See Section 3.5). There has been new privacy legislation replacing this that recently came into operation but I believe it has the effect of strengthening the provisions of the previous law not reducing them.
Also in the US there is a distinction between 'Laboratory Testing' and 'Pathology'. 'Laboratory testing' is what we refer to here as clinical pathology (biochemistry, haematology and microbiology) while 'Pathology' is what we call anatomical pathology. Genetics and more sophisticated testing (for example genomics) are often undertaken in reference laboratories and reported separately. Laboratories are licensed in the US for certain tests only. In the Kaiser paper (and the reference made by Louise) for example where no harm was shown to be done by making results instantly available, they excluded tests like cancer diagnosis, genetics, and other tests like the current media favourites BRCA1 and 2.
The literature around failure to review and follow-up pathology reports may also be misinterpreted. Most pathology in Australia is done outside of hospital and most of that in General Practice. Accreditation of general practice requires assurance that quality systems are in place for the management and review of pathology reports and this is monitored under the accreditation scheme, furthermore almost all pathology reports are sent to general practice electronically and the most used GP Clinical Information Systems are designed so that a pathology report has to be reviewed to remove it from a queue. The UNSW team that identified the issue of reports not being read in an Australian Hospital, in a later paper showed changes to the Hospital Informations System went a long way to fixing this - it is not something you would likley use the PCEHR to fix.
None of this, however, is to say there is no room for improvement in pathology requesting and reporting. Indeed the work of ECRI Institute suggests it is a leading safety concern for healthcare organisations
https://www.ecri.org/Forms/Pages/PSRQ_Top10.aspx.
Firstly a big thanks to Michael Legg for providing the analysis this morning. Also to David More for continuing to provide a valuable public forum where such issues can be discussed openly.
ReplyDeleteAndrew McIntyre asked "Do you have any academic reviews of the plus and minus side of sending results directly to the patients with enabling providers to vet the results first??"
It is quite difficult for those of us without ready access to academic journals to undertake thorough reviews of the literature. However, the open article on imaging informatics for consumer health at http://jamia.bmj.com/content/early/2013/06/04/amiajnl-2012-001457.full.pdf+html does contain a number of references to publications relevant to this area, particularly wrt cancer diagnoses and care.
Raising health literacy amongst patients is often a goal of organisations and projects establishing patient portals.
The question being asked in the current (6 November) poll, presumably inspired by this thread, misrepresents what is actually being suggested, to the point where it is a (mis) leading question.
ReplyDeleteBarracking is not going to advance the cause.
Sorry I don't follow. What should the question be? I can even run it next week if that would help and the question better represents what is proposed - remembering that, at present, final decisions are still not made. A meeting of Stakeholders in late Nov. is meant to sort things out - if you can believe it.
ReplyDeleteDavid.
For those still watching the conversation here and on a positive pro-consumer note, the Lab Tests Online site has been revamped today. It represents one of the initiatives being undertaken to help everyone understand pathology better. It is worth a look
ReplyDeletehttp://www.labtestsonline.org.au/
Labtestsonline.org.au: "It represents one of the initiatives being undertaken to help everyone understand pathology better."
ReplyDeleteExcept that it is one step forward and several backwards. It is not backwards compatible - just trashes all the old test links that used to exist. It is now completely out of kilter with all the other Labtestsonline around the world.
And because the site is currently completely broken, it is impossible to tell whether there has been any attempt to align test names with PITUS or MBS or LOINC or RCPA manual or NATA or ….
A resource like this should support dynamic linking - that is what patients want and need. The ANDREW GEORGIOU, MICHAEL LEGG AND GLENN EDWARDS paper indicates this and states in the section Challenges for Australia: "Clinicians’ unease about direct notification of pathology (including abnormal) results often relate to concern about patients’ understanding of, and ability to interpret results".
LabTestsOnline should support this - it could even support Australian patients whose first language is not English - but unfortunately these simple, yet powerful functions, don't appear to have even been factored into the design.
Thanks for letting me know of these problems. I was not aware of them and certainly support the linkage as you suggest I should. Indeed we included this as part of the next phase of PITUS but haven't heard from the DoH on support for the project. I had hoped that some of the terminology linkage had started already. I'll let members of the Board of Lab Tests Online know of the issue.
ReplyDeleteUm, I'm sorry, but whose information is it actually? This is the patient's information, not the clinician's! In many cases the patient pays for it personally, if not indirectly via Medicare. They suffer the discomfort or inconvenience of providing their tissues or fluids for the examination... On what basis do we have any right to deny them access? Other than hysteria and historical habits? Maybe this will stop clinicians ordering so many bloody useless tests! Bring it on! And yes, I am a very experienced specialist doctor!
ReplyDeletere: "I'm sorry, but whose information is it actually?"
ReplyDeleteGood question. As far as I know, it hasn't been defined, either in terms of the system or in terms of legislation.
It might be claimed (because of the Personally controlled part of the PCEHR) that it is the patient's. But control is not the same as ownership. A bank may control the money in your cheque account, but you own it.
The issue of ownership of a person's health information may well come back to bite the owners of the PCEHR.
Re: David at 12:56 on 6 November :
ReplyDeleteThe reason the question was misleading is that the proposed posting of results to the PCEHR would occur in parallel with – not replace – existing results notification systems.
Hence referrers would be sent results at the same time the results were sent to the PCEHR. They would have 7 days (from dispatch) to make any patient contact necessary (and/or to provide access via their own portal). As noted before, it is usual practice for urgent or unexpected results to be notified to the referrer immediately by phone – if the referrer is contactable.
A key reason for making upload to the PCEHR automatic (if consent is not withdrawn) was to ensure that results would in fact get to the PCEHR.
This potentially raises the question of whether the PCEHR is an (or the most) appropriate way to establish a registry of test results (or at least of tests performed).
Others in the thread have commented on the numerous current problems with the request-test-report loop: finding the referrer, non-standard terminologies (test names and test results), varying presentations of results, security of the message, non-standard messaging technologies, lack of appropriate messaging HW and SW at referrer and provider practices, confirmation of result receipt, reconciliation of requests sent and results received, reconciliation of any discrepancy between the diagnostic report and the clinical picture (often not fully communicated to the diagnostic service), confirmation of action on the result. Whether any of these should be particularly prioritized, and to what extent the PCEHR could contribute to solutions, are further questions that could be considered.
There are also the questions around where the patient should appear in (or next to ?) this loop. As has been pointed out, Australian law is generally that any patient must be told, if they so wish. Not all will want to be told in any detail, those who do may have different preferences for how and by whom they are told, not all will want (or be able) to understand it all, ‘educated’ or not.
Some have questioned the privacy and security of results that do make it into the PCEHR – this is really a broader question about the access rules for the PCEHR in general.
So it’s a complex problem, which would seem to need a broad approach with carefully defined and effective governance. In one of its several previous iterations in this area, NEHTA explicitly declined the governance role. As has been pointed out before on this blog, the lack of effective governance is one of the most glaring deficits in our ‘system’ – raising the question of how to fix it.
"As has been pointed out before on this blog, the lack of effective governance is one of the most glaring deficits in our ‘system’ – raising the question of how to fix it."
ReplyDeleteWith many large IT systems, fixing a fundamental problem once it is up and going is orders of magnitude greater than making the right decision in the first place. In fact it may not be possible to it fix because of the way the system has been integrated into other systems and the way it is being used.
If you want to build a large IT system, governance is essential. If you don't want or can't have governance then you let lots of people try lots of solutions, many of which will fail, and when the dust has settled, you pave the pathways that are being used.
A sad hypothetical - could this happen?
ReplyDeletePeter had recently returned from an overseas holiday and now he had a nasty, itchy rash in an embarrassing place. He decided to consult a doctor in a town that was a few hours drive away, for privacy reasons. Dr Fixit suspected an STD, and asked Peter to go along to the local pathology service and have his blood taken. When we get the result, I’ll give you a call. Here is a script for antibiotics – don’t get it dispensed yet until I call you with the result. Are you OK to post the results of your test to your PCEHR? Yes said Peter, because he (mistakenly as it turns out) thought that only he and his doctor would be able to see the result using the PCEHR.
A few days after his test, Dr Fixit rang Peter and asked him to get the script filled and start taking the antibiotics. The result was positive for the STD.
When Peter went to his local pharmacy to collect his antibiotics, he realized that the young pharmacist on duty was a colleague’s daughter. She blushed when he called out her name to say hello.
A few days later, Peter was involved in a car accident and the ambulance took him to the local hospital with chest pain. In the Emergency Room, the clinical system recognized that Peter had a PCEHR, which was then dutifully accessed by the doctors in the ER, and the doctors in the Medical Imaging department, the pathology department and the hospital pharmacist. The chest pain turned out to be a broken rib. No one asked him about the rash, which by now was starting to heal.
Peter went home after a few hours.
When he logged in to his email, he noticed that he had two emails from the PCEHR operator advising him that his PCEHR had been accessed by two providers. He had never logged in to his record before, and after several unsuccessful convolutions and calls to the help-desk, he was finally able to open his record for the first time, and there, at the top of the list was the report with the positive result for the STD. The audit log showed that the record had been accessed by his local pharmacy, and also by his local hospital. Now he was worried. How many people in the hospital would have been able to see his test result? Could the local pharmacy shop staff see it too? Is that why the pharmacist had blushed? Did everyone in this town now know his result? Had they printed it out and put it in his record at the hospital?
The following Sunday as he delivered the mass, he noticed that there was quite a bit of sniggering and whispering in his congregation.
"A sad hypothetical - could this happen?"
ReplyDeleteYes. The PCEHR is infrastructure. How it is used is of no concern to NEHTA or DOH.
You control your PCEHR, it's all your fault if things go wrong.
And they want to make it Opt out?
I hope they have really deep pockets for when they get sued to buggery. Unfortunately, its us taxpayers who will have to pay. And her majesty has moved on.
That could just as easily be a member of parliament in front of the local constituents, not so funny now is it Minister, but then you have someone whose experience comes from the tax department and what a user friendly and caring system that is
ReplyDeletePatient access to diagnostic test results: the RACGP's view
ReplyDeletehttp://www.pulseitmagazine.com.au/index.php?option=com_content&view=article&id=2165
Written by Nathan Pinskier (chair of the RACGP’s National Standing Committee – Health Information Systems.)
14 November 2014.
Interesting closing paragraphs:
"There has been little to no focus on this requirement at a national eHealth level, which one might consider to be a core requirement and duty of care (call it the primary use case).
Direct uploading of volumes of human un-curated diagnostic reports to the PCEHR will not in itself solve the issue of tests that are not followed up and will create a new medico-legal concern in that providers will have no immediate visibility regarding which test reports have been reviewed and followed up.
Put simply: big data, big workflow, big risks."
Reading between the lines, he's not a happy chappie.
Bernard, Nathan was one of teh Clinical Leads let down and ignored by the IT jocks. Can't have been easy trying to market a vision when behind you expectations were being watered down and delay tatics put in place to cover up the mess. Still they have a friend in CHF now and there is nothing more worming than paying stakeholders to agree with you
ReplyDeleteSpeaking as one of the IT jocks... it's a good thing the clinical leads didn't get everything they wanted. There's plenty of blame to share around
ReplyDelete"Speaking as one of the IT jocks... it's a good thing the clinical leads didn't get everything they wanted. There's plenty of blame to share around"
ReplyDeleteAnd this is why you fail at health informatics and are an IT crock jock.
This is your eHealth leadership sector, no wonder this thing is stuffed
Interesting bite from the dark side, there are only a couple of jocks that would fit this discription and one is not silly enough to reply and probably would not care anyway, one has an ego big enough to consider himself some sort of jock.
ReplyDeleteHowever you are jock walk away quietly and let others fix your mess, it will be easier the less protectionism there is in place
Relax Guys,
ReplyDeleteThose here are not the problem - Senior 'crats at DoH and NEHTA are the problem!
They are the ones who have totally messed up!
David.
All very good David, however there are IT Jokes who sre also the crats at NEHTA, its a shame there is no informatics at the top
ReplyDeleteThere's plenty of blame to share around. Is that An admission the system ais broken by DoH and/ Nehta. or more broken than we know? Or is it some sort of an apology?
ReplyDeletePerhaps it is time for an inderpendant archtectual review of the PCEHR to understand just what the foundations can actually support against the proposed future state.
An i mean a forensic review not one based on closed door meetings with those in the know
So the future is thee blame game, excellent leadership Executive Jock. All the while we dig deeper into a hole that may very well restrict the systems ability support the broader system of systems and the goals of eHealth.
ReplyDeleteI am not sure we can move forward with this approach, we need seasoned minds on this problem