How to fix the PCEHR and salvage eHealth
Fixing the PCeHR is entirely possible, all that is required is wherewithal to bite the proverbial bullet.
It can be done with 5 simple steps.
It can also be cash flow positive in the first year.
Step 1
Accept that the basic PCeHR concept is fundamentally flawed. It is flawed for all of the following reasons:
A) No average patient wakes up in the morning and goes "Gee, what I want today is a jolly good PCeHR".
Because of this fundamental reality there is no driver for "opt in" from the patient perspective, and, for better or worse, there never will be.
No amount of advertising will ever fix this because most patients will never really know what a medical record does, or why they need one. There is nothing wrong with that. They don't need to.
Medical records exist because clinicians want them to exist, both to facilitate communication, continuity of care, and to provide some degree of CYA protection in the event a particular patient's care becomes subject to legal overview.
Unless you tap into the key driver for a medical record to exist it will never be either wanted or useful.
This really means the PCeHR needs to do useful stuff for clinicians, not at some notional time in the future, but right this second.
B) A record is only useful if it exists.
I can neither put information into, nor extract information from something that does not exist.
While the vast majority of Australians continue not to have a record the system will remain useless, and as per 1 there is no driver for patients to covet one.
C) Privacy and utility are somewhat mutually exclusive concepts. Currently 95% of Australians have 100% privacy and 0% utility because they don't have a PCeHR. The remaining 5% still have near 0% utility because the PCeHR as it stands is virtually clinically useless.
D) Shared summaries as the premier item is a pretty silly idea.
It is efficient and easy to put all patient information into a record and then use search to find it (regardless of format) - look at the Internet. Putting everything in means there is no expensive curator function required. Just put it in, use search to find it and access control to protect it.
It is inefficient and expensive to expect doctors to add "shared health summaries". This provides both an incomplete record and carries high labour costs.
Data says this happened at this time is, by its very nature, timeless. Data is event X happened at time Y. No judgement, no interpretation just this stuff happened then.
A shared summary is a rapidly ageing snapshot of decreasing utility with each passing second. It is also subject to recorder bias, right from very the moment it's created.
Data is clean, accurate, and objective. Shared summaries are almost certainly inaccurate, incomplete and highly subjective.
E) It must be possible to explain exactly why the PCeHR should exist.
Because we think it's a good idea is not good enough! Not for a billion dollars.
If you can't easily detail the benefits that will flow from the existence of a PCeHR then it has no right to life.
The only people who you need to want it are clinicians. Clinicians do stuff for patients and unless using the PCeHR delivers meaningful utility to clinicians in the course of treating their patients it won't see widespread use.
With key government infrastructure the commercial reality of a solid business case need not always apply, however there is no reason why this infrastructure should not have a quasi commercial eye towards identifying savings and efficiencies, and there are savings, huge savings.
Step 2
Declare that as of July 1st 2014 all Australians will now have both an IHI a PCeHR.
If you recall something similar was what was done with Tax File Numbers, although none of us can actually see the NPCTFR (Not Personally Controlled Tax File Record).
Let's face it we all know we all have an individual person identifier for Government. You might be listed on 2 Medicare cards but that is still a unique identifier. You almost certainly have a Tax File Number, another unique identifier. An IHI is just another one. In the background we all have an Australia Card Number, or near enough to it that it makes no difference.
Leverage the current complex and convoluted sign up process to allow patients to opt out, rather than opt in. All conscientious objectors would have 6 months to get their access, login and tick the box to make their record private. I would be willing to bet this would be less than 5% of the entire population, and probably less than 1%.
This preserves privacy perfectly for those that want it but gives 95-99% record coverage. We need this level of coverage to make the PCeHR useful because it is no use if it does not exit.
To augment utility people who want totally private records should be allowed to add in their chosen clinicians so they can have their cake and eat it too.
Step 3
Put some clinically relevant data into all these new records.
What is clinically relevant and would be easy to do?
Currently the government pays for 90% of all medications via the PBS, so put all this data in for the last year. Although it's not a complete record it is likely to be a far more accurate rendition of what a patient is actually taking than most patient management systems because not only was the medication prescribed it was actually paid for and picked up.
On that note am I the only person who thinks that the first task NeHTA should have attended to was to declare a unique identifier for every medication available in Australia? Without this any form of coherent patient A is on medication X, Y, Z communication between IT systems is damn near impossible.
Similarly for pathology. Currently pathology results are pushed out to individual medical practices. Why not make a small change and push them into a central repository (courtesy of the PCeHR) and then allow the practice management software to extract it from there?
It is said that 20% of all blood tests will be repeated by another GP within 60 days. Probably at least 50% of the time this is because they are not aware a clinically relevant result already exists. With a total pathology spend by Medicare of over 2.5 billion pa this 10% saving would provide significantly more then NeHTAs entire annual budget.
Similarly for radiology, although this could include not only reports but also the original images.
At this point we have a record that exists, pays for its own generation and upkeep in savings, and has genuine utility for the people the use it.
For example if I know what medications a patient has paid for an picked up I have a pretty good idea what they are actually taking. As a side benefit you also have what could be a near real time prescription shopping database. If a clinician can see a patient got Valium last week it makes the decision to not prescribe it again far easier, no matter how convincing the story.
If I can find blood test ordered by another doctor a few weeks ago the need to reorder it (unless clinically indicated) also disappears, and there is a $250+ million a year saving.
And the old chestnut from radiologists about "no comparison films". Not only would this be gone but more cancers would be caught sooner if comparison films were available. (Sorry George - a bit of poetic licence)
Step 4
Allow the uploading of any reasonable format of data. Text files, doc files, html files, image files and even HL7 can all be read on any desktop computer with a PMS. All bar HL7 can be read on any consumer PC.
Allow upload to the logical categories used by current PMS systems like "Notes", "Letters", "Dischagre Summaries", etc.
Use the power of search to make this data accessible.
Now we have a record where clinicians can share notes between different sites and there is no need to spend anything on secure messaging, just send it to the PCeHR where those that need to read it can read it.
Can anyone tell me who thought allowing 7 different secure messaging systems to come into existence was a good idea? None of then speak to each other (unless they have receive millions of dollars of tax payer dollars) and for all intents and purposes no one uses them.
Wouldn't the best way to send a secure message about a patient be to simply upload it to the PCeHR where it could be read by anyone who needed to?
Where should you put your advanced health directive so your final wishes are known? Where better than your PCeHR?
By accepting data in any reasonable format the modifications required to all the existing clinical software are trivial so both the time frame to implement these changes are short and the costs are small.
Step 5
Solve the fundamental problem of eHealth. "And what's that?", I hear you ask.
The fundamental question is simple. Any useful medical record contains a whole lot a sensitive patient information. You can't have it any other way. Can you imagine a bank that say "We're great we have no money in the vault so there's nothing to steal so you money is safe with us!"
Getting back to the fundamental question:
How do I as a patient make it known that I want a doctor I have yet to meet (because I have not yet had the accident that brought me to DEM unconscious) access my record?
There are exactly two options: black list or white list. The null option of having nothing there to steal is just stupid.
With the white list model everyone is banned from seeing everything unless they are specifically allowed. This is the privacy model and is high maintenance as every extra person needing access has to be individually added, and the question then becomes who adds who?
With a black list model everyone who is not specifically banned can see things. This is the utility model and it's how things work in the real world right now.
With a black list model any registered clinician would be able to access all patient data, however all access (to every document) must be logged. Access logging is the fundamental process used to "keep the bastards honest" where a large number of people need access to a large body of sensitive data. All Federal agencies use it because it works and why should health information be different? To be frank I personally would be less worried about you seeing my blood tests than my taxable income.
A back list model would provide the patient with a full record of who has looked at their stuff so they could if they wished perform an audit role (note both the cost savings and accuracy of a patient doing their own auditing). Add in personal control by allowing patients to block certain clinicians if required.
Automated systems could also perform auditing and pass on anomalies to human auditors. This is precisely the sort of system banks use to detect credit card fraud. Medicare, Centerlink and the ATO all use similar systems.
This basic black list model could be complicated by providing access levels but think about what we have now. A patient's notes are often a just a manila folder. There is no logging and there is no access control. We all use them, and the system works. An electronic system with access logging would be safer than what we have in use right now.
For that minority who want the ultimate in privacy, all then need is the ability to mark their record private and only allow access to clinicians they want to see their stuff they have flipped over to a white list model. They can handle all the acces details (therefore not a Government cost - user pays in time not cash)
With this simple approach we get the best of both worlds - utility and privacy, patients control whether their record runs in black list or white list mode, and in white list mode they themselves pay for (in time not cash) the access control
Step 6 (Optional)
To encourgage clinicians to put data into the record it would be quite simple to link Medicare benefit payments to data upload. This could be done for medical consults, pharmacy dispensing, pathology and radiology.
But do you know what?
I don't think you would need to use much of a stick because the record described would actually be useful, and people tend naturally to use stuff they find useful.
Just my 5c
Dr James Freeman
https://gp2u.com.au/
Fixing the PCeHR is entirely possible, all that is required is wherewithal to bite the proverbial bullet.
It can be done with 5 simple steps.
It can also be cash flow positive in the first year.
Step 1
Accept that the basic PCeHR concept is fundamentally flawed. It is flawed for all of the following reasons:
A) No average patient wakes up in the morning and goes "Gee, what I want today is a jolly good PCeHR".
Because of this fundamental reality there is no driver for "opt in" from the patient perspective, and, for better or worse, there never will be.
No amount of advertising will ever fix this because most patients will never really know what a medical record does, or why they need one. There is nothing wrong with that. They don't need to.
Medical records exist because clinicians want them to exist, both to facilitate communication, continuity of care, and to provide some degree of CYA protection in the event a particular patient's care becomes subject to legal overview.
Unless you tap into the key driver for a medical record to exist it will never be either wanted or useful.
This really means the PCeHR needs to do useful stuff for clinicians, not at some notional time in the future, but right this second.
B) A record is only useful if it exists.
I can neither put information into, nor extract information from something that does not exist.
While the vast majority of Australians continue not to have a record the system will remain useless, and as per 1 there is no driver for patients to covet one.
C) Privacy and utility are somewhat mutually exclusive concepts. Currently 95% of Australians have 100% privacy and 0% utility because they don't have a PCeHR. The remaining 5% still have near 0% utility because the PCeHR as it stands is virtually clinically useless.
D) Shared summaries as the premier item is a pretty silly idea.
It is efficient and easy to put all patient information into a record and then use search to find it (regardless of format) - look at the Internet. Putting everything in means there is no expensive curator function required. Just put it in, use search to find it and access control to protect it.
It is inefficient and expensive to expect doctors to add "shared health summaries". This provides both an incomplete record and carries high labour costs.
Data says this happened at this time is, by its very nature, timeless. Data is event X happened at time Y. No judgement, no interpretation just this stuff happened then.
A shared summary is a rapidly ageing snapshot of decreasing utility with each passing second. It is also subject to recorder bias, right from very the moment it's created.
Data is clean, accurate, and objective. Shared summaries are almost certainly inaccurate, incomplete and highly subjective.
E) It must be possible to explain exactly why the PCeHR should exist.
Because we think it's a good idea is not good enough! Not for a billion dollars.
If you can't easily detail the benefits that will flow from the existence of a PCeHR then it has no right to life.
The only people who you need to want it are clinicians. Clinicians do stuff for patients and unless using the PCeHR delivers meaningful utility to clinicians in the course of treating their patients it won't see widespread use.
With key government infrastructure the commercial reality of a solid business case need not always apply, however there is no reason why this infrastructure should not have a quasi commercial eye towards identifying savings and efficiencies, and there are savings, huge savings.
Step 2
Declare that as of July 1st 2014 all Australians will now have both an IHI a PCeHR.
If you recall something similar was what was done with Tax File Numbers, although none of us can actually see the NPCTFR (Not Personally Controlled Tax File Record).
Let's face it we all know we all have an individual person identifier for Government. You might be listed on 2 Medicare cards but that is still a unique identifier. You almost certainly have a Tax File Number, another unique identifier. An IHI is just another one. In the background we all have an Australia Card Number, or near enough to it that it makes no difference.
Leverage the current complex and convoluted sign up process to allow patients to opt out, rather than opt in. All conscientious objectors would have 6 months to get their access, login and tick the box to make their record private. I would be willing to bet this would be less than 5% of the entire population, and probably less than 1%.
This preserves privacy perfectly for those that want it but gives 95-99% record coverage. We need this level of coverage to make the PCeHR useful because it is no use if it does not exit.
To augment utility people who want totally private records should be allowed to add in their chosen clinicians so they can have their cake and eat it too.
Step 3
Put some clinically relevant data into all these new records.
What is clinically relevant and would be easy to do?
Currently the government pays for 90% of all medications via the PBS, so put all this data in for the last year. Although it's not a complete record it is likely to be a far more accurate rendition of what a patient is actually taking than most patient management systems because not only was the medication prescribed it was actually paid for and picked up.
On that note am I the only person who thinks that the first task NeHTA should have attended to was to declare a unique identifier for every medication available in Australia? Without this any form of coherent patient A is on medication X, Y, Z communication between IT systems is damn near impossible.
Similarly for pathology. Currently pathology results are pushed out to individual medical practices. Why not make a small change and push them into a central repository (courtesy of the PCeHR) and then allow the practice management software to extract it from there?
It is said that 20% of all blood tests will be repeated by another GP within 60 days. Probably at least 50% of the time this is because they are not aware a clinically relevant result already exists. With a total pathology spend by Medicare of over 2.5 billion pa this 10% saving would provide significantly more then NeHTAs entire annual budget.
Similarly for radiology, although this could include not only reports but also the original images.
At this point we have a record that exists, pays for its own generation and upkeep in savings, and has genuine utility for the people the use it.
For example if I know what medications a patient has paid for an picked up I have a pretty good idea what they are actually taking. As a side benefit you also have what could be a near real time prescription shopping database. If a clinician can see a patient got Valium last week it makes the decision to not prescribe it again far easier, no matter how convincing the story.
If I can find blood test ordered by another doctor a few weeks ago the need to reorder it (unless clinically indicated) also disappears, and there is a $250+ million a year saving.
And the old chestnut from radiologists about "no comparison films". Not only would this be gone but more cancers would be caught sooner if comparison films were available. (Sorry George - a bit of poetic licence)
Step 4
Allow the uploading of any reasonable format of data. Text files, doc files, html files, image files and even HL7 can all be read on any desktop computer with a PMS. All bar HL7 can be read on any consumer PC.
Allow upload to the logical categories used by current PMS systems like "Notes", "Letters", "Dischagre Summaries", etc.
Use the power of search to make this data accessible.
Now we have a record where clinicians can share notes between different sites and there is no need to spend anything on secure messaging, just send it to the PCeHR where those that need to read it can read it.
Can anyone tell me who thought allowing 7 different secure messaging systems to come into existence was a good idea? None of then speak to each other (unless they have receive millions of dollars of tax payer dollars) and for all intents and purposes no one uses them.
Wouldn't the best way to send a secure message about a patient be to simply upload it to the PCeHR where it could be read by anyone who needed to?
Where should you put your advanced health directive so your final wishes are known? Where better than your PCeHR?
By accepting data in any reasonable format the modifications required to all the existing clinical software are trivial so both the time frame to implement these changes are short and the costs are small.
Step 5
Solve the fundamental problem of eHealth. "And what's that?", I hear you ask.
The fundamental question is simple. Any useful medical record contains a whole lot a sensitive patient information. You can't have it any other way. Can you imagine a bank that say "We're great we have no money in the vault so there's nothing to steal so you money is safe with us!"
Getting back to the fundamental question:
How do I as a patient make it known that I want a doctor I have yet to meet (because I have not yet had the accident that brought me to DEM unconscious) access my record?
There are exactly two options: black list or white list. The null option of having nothing there to steal is just stupid.
With the white list model everyone is banned from seeing everything unless they are specifically allowed. This is the privacy model and is high maintenance as every extra person needing access has to be individually added, and the question then becomes who adds who?
With a black list model everyone who is not specifically banned can see things. This is the utility model and it's how things work in the real world right now.
With a black list model any registered clinician would be able to access all patient data, however all access (to every document) must be logged. Access logging is the fundamental process used to "keep the bastards honest" where a large number of people need access to a large body of sensitive data. All Federal agencies use it because it works and why should health information be different? To be frank I personally would be less worried about you seeing my blood tests than my taxable income.
A back list model would provide the patient with a full record of who has looked at their stuff so they could if they wished perform an audit role (note both the cost savings and accuracy of a patient doing their own auditing). Add in personal control by allowing patients to block certain clinicians if required.
Automated systems could also perform auditing and pass on anomalies to human auditors. This is precisely the sort of system banks use to detect credit card fraud. Medicare, Centerlink and the ATO all use similar systems.
This basic black list model could be complicated by providing access levels but think about what we have now. A patient's notes are often a just a manila folder. There is no logging and there is no access control. We all use them, and the system works. An electronic system with access logging would be safer than what we have in use right now.
For that minority who want the ultimate in privacy, all then need is the ability to mark their record private and only allow access to clinicians they want to see their stuff they have flipped over to a white list model. They can handle all the acces details (therefore not a Government cost - user pays in time not cash)
With this simple approach we get the best of both worlds - utility and privacy, patients control whether their record runs in black list or white list mode, and in white list mode they themselves pay for (in time not cash) the access control
Step 6 (Optional)
To encourgage clinicians to put data into the record it would be quite simple to link Medicare benefit payments to data upload. This could be done for medical consults, pharmacy dispensing, pathology and radiology.
But do you know what?
I don't think you would need to use much of a stick because the record described would actually be useful, and people tend naturally to use stuff they find useful.
Just my 5c
Dr James Freeman
https://gp2u.com.au/
posted by tachyon at
12:34 AM
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