Will more money fix the PCEHR? What’s on your wish list?

Will more money fix the PCEHR?

Image: pixabay.com

According to Pulse+IT magazine NEHTA wants to make their e-Health records system (PCEHR) more useful and usable for clinicians and consumers. A steering committee chaired by Dr Mukesh Haikerwal will meet next week for the first time.

When I expressed my enthusiasm on LinkedIn, the following two spot-on responses made me smile:

Agree Edwin lets hope. However from the look of the makeup of the steering committee it does not look like there will be much input from regular GPs and is mostly in house between NEHTA and DoHa.

Why didn’t NEHTA do this at the scoping stage (before a line of code was cut). Now they are trying to do this retroactively and hope that it works…. Nothing short of amazing….

My wish list

Minister for health Tanya Plibersek has announced yet more money today ($8M): pathology and diagnostic imaging will be stored in the PCEHR. The government is creating a Rolls Royce with bells and whistles that nobody wants to drive. So how to improve the uptake of the PCEHR by clinicians? I haven’t been invited to the NEHTA steering committee (no idea why not) but I will send in my wishlist anyway. Here it is:

  1. Government organisations involved in the PCEHR should be audited annually by a group of representatives from consumer and professional bodies
  2. A public list should be made available of all organisations with access to clinical patient information
  3. Government and affiliated organisations are not allowed to use any uploaded clinical data for e.g. insurance purposes, audits, police/immigration/background screening etc. This needs to be spelled out in the participation contract
  4. Data mining and scientific research can only be performed after doctor and patient have given consent. This needs to be spelled out in the participation contract
  5. Remove the dreaded IP clause from the participation contract that states that all information can be used by the government world-wide, perpetually etc
  6. When health care organisations or individual clinicians no longer want to take part they must be able to remove all their uploaded clinical data from the database
  7. Ensure patient information can not be hidden without the usual GP being aware
  8. Ensure and facilitate that clinicians are fully indemnified when participating
  9. Registration for the PCEHR as well as cancellation should be quick and easy
  10. Ensure a 24/7 knowledgeable and custom-oriented help desk with minimal waiting times
  11. Send out a quarterly newsletter to all participating clinicians to keep them up-to-date with PCEHR and NEHTA developments
  12. Cherish the clinical steering committee, make sure it’s involved at all times, and ask for lots and lots of feedback from clinicians!

What’s on your wish list? Leave a comment below and I’ll send it to the steering committee.

30 thoughts on “Will more money fix the PCEHR? What’s on your wish list?

  1. Edwin,

    My plan is much simpler. Either simply can the whole thing or a total system redesign that makes the thing clinician centric and then provide access to relevant information for patients – and give patients better tools to interact and be supported by their doctor.

    The overall architecture and design of the PCEHR is plain wrong IMVHO.

    David.

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  2. Hi Edwin,
    Great initiative.
    My wish is very simple, can we find a way for immunisations given at school to be entered without parents needing to go to GP to do this…seems very ineffienct and impractical. And without this mechanism the immunisation record will remain incomplete.
    Thanks
    Jocelyn

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  3. Thanks Edwin for inviting me to comment.
    My wish list:

    Points 1-12 as you have very clearly elucidated. And Also;

    1.Data to be used as Public health quantification and future policy planning must be consented upon to be uploaded and then perturbated mathematically to never be able to trace the original source unit data as is done with the census. A clear idea of who will use this data and for what purpose needs to be part of the original consent. At this stage this is not happening and has major risks in security.

    2. It needs to be acknowledged legally to the Government that this data is OWNED BY THE PATIENT. Any breaches of its use outside the scope and consent processof the patient, will be both prosecuted and open to a significant compensation case.

    3. The understanding of cyberstorage of data in the cloud needs to be communicated both to patients and to the Doctors performing the data entry. The understanding of the security arrangements around this cloud storage need to be known.

    4. I would like to see IT professionalls and those in security aspects of cybercrime be part of this committee. Those qualifications to be part of such a significant technological advance need to be scrutinised and cronyism avoided. IT people know who is talking BS to get a fat government paycheck, and who is the real deal. Qualifications to be determined by those within the IT industry rather than Government sources who are often very underdone with both business and IT knowledge. Clearly they also need to be communicators.

    5. MOST IMPORTANTLY as Lord Darzi said regarding the NHS changes if you do not get Physician engagement and input to those changes the program (whatever it is) will NEVER work.
    Therefore I would like to see Dr Mukesh Haikerwal lead this group and have more input rather than be seen to be a figurehead who is rather hog tied with respect to that input. When I say LEAD I mean LEAD. The determination and ability to make the decisions necessary.
    A working group of hospital, pathology, radiology and especially General Practitioners Allied health practitioners need to be on the working group. (It is significant that all the Drs I have spoke to who are directly involved in this project KNOW that is an unworkable in its present state due to the bloody minded ignorance of those running it regarding the work practices of GP’s and Dr’s.)

    6. Privacy Comissioners and Legal Experts in IP need to be involved to protect the rights of patients.

    7. Practitioners and Patients need to be made aware that having this kind of data is worth gazillions to the Government and to industry. It should not be given away for “free”

    8. The quality of the research will only be determined by the quality of the data. Remember the JEDI KNIGHT religion question on the census?? Doctors need to be paid to upload this data separately from the consultation. It is probably more easily done WITHOUT the patient in the room as one is not then distracted by the new “pain down the R fibula” that comes on when eating ice-cream whilst one is uploading their coronary angiogram report. We all know how patients rapidly move onto the next problem even whilst we are trying to construct the notes and treatment plan for the previous problem.

    9. Ideally the PECHR will sync well with the current major medical software packages and at least be able to minimise some of the data entry issues as adding minutes to every consultation will add hours to every day for most practitioners. This will depend on security issues.

    10. The education process for patients will be necessarily extensive and the cautions risks and liability needs to be clearly explained to them Older people, Sociao economically disadvantaged people, Migrants, Refugees, Severe mental Health issues will probably struggle to manage the technological literacy required.

    11. I have seen the forms in the Medicare offices and it is not consent it is pitched at the level of the used car salesman and is disingenuous. It seemed like a good idea at the time is the road to hell paved with good intentions.

    12. Lets slow the process down, make it bipartisan so its not an electoral issue and make sure we get it right with adequate testing before it is unleashed enmasse onto an unsuspecting public.

    13. Oh and one more thing. The board of experts, consumers and professionals should be gender equal. 50% representation of Women. Not due to feminism but due the expertise of women, and to the effect that diversity of boards has on general productivity which is well known.

    Thanks again Edwin

    Dr Karen Price
    MBBS, FRACGP
    Chair of the Women In General practice Committee
    RACGP Vic

    SoMe and IT enthusiast.
    Likes Cervantes & Don Quixote too.

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  4. Edwin, I like the concept of providing a steering committee with a wish list but unfortunately I won’t. The reason is that NEHTA or the consultants (which have been paid huge $’s) will use our ideas to fix their original omissions and errors in the scoping and design of the PCEHR of which we will receive no recognition for. Smaller vendors and health consultants need a voice as well, and should be part of this reset process. Unfortunately we just get drowned out by the bigs guys at $3,000 a day or more….

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    • I still think that the idea of a greater good works here Paul although I empathise with your sentiments. Most people with good ideas are never given the credit or the $$ due. I for one do not want to work with a cluster F..&%$# of some numskulls making. Whilst there is no pay and no recognition I take it as a risk mitigation strategy. The constant drive by Governments and ill informed committees with this guff so poorly implemented; with revalidation, poorly indexed MBS etc….will drive Drs out of General Practice.

      Most of the best things we do with the greatest impact happen to be the least well paid. Sad but true that life is not equitable. Why else would a footballer be paid more than a child care worker or a teacher?

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  5. OH yea another thing……

    14. ADOLESCENTS
    Need to have confidentiality from the age of 11 IF it is required. Controversial but allowing access of parents to their childrens records up until they are 18 will marginalise those AT RISK Adolescents from accessing adequate health care.

    This is a serious oversight.

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  6. Hi Edwin
    Just for starters lets ask them to engage with the key stakeholders and people that could acutally make this work. Until Govt lifts thier heads out of the sand and admits that the PCEHR in its current state is a failure and starts engaging GPs for input then we will get nowhere fast.
    Perhaps we could ask the health minister to divert the $8m she has just pledged to add more bells and whistles to the already non supported PCEHR (which again Govt has no commitment from the key providers that they will use or support) into something that will actually benifit the health system.

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  7. Karen as always, all-encompassing and well summarised. Agree with her points completely. My two main wishes would be:

    1. Privacy for adolescents. This was brought up at a GPRA meeting with some NEHTA spokesladies. They were stumped when questioned about the concept of a teenager not wanting to have their records accessed by parents. Still no solution has been fedback to us. As Karen mentioned, they are a group that we already need to work hard to connect with, ‘Parent’ Controlled e-Health Record could further damage this opportunity

    2. Input from GP registrars. Not one GP registrar is on the clinical leads team. Despite myself and another interested reg (D. Chessor) offering on numerous occasions. Apparently the call went out to registrars a few years ago and wasn’t answered. Well it would be now!

    Thanks for the blog post Edwin. More collaboration from the outset was needed, we’ll be battling uphill to get an outcome that is GP and patient friendly from now.

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  8. Wouldn’t hurt to have someone on the other end to talk to! Hospitals need to be told that they must have all inpatient path, radiology and discharge summaries available in the PCEHR for it to be any use. GPS are pretty good at being able to ring each other and sort stuff out when a new pt presents, but the black hole of hospital communication is the thing tha needs to be fixed.

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  9. Thanks Edwin for a great post and keeping your finger on the pulse with this.

    I agree whole-heartedly with all of the comments so far.

    I still feel somewhat ignorant when it comes to the PCEHR even as a patient in the system.

    My main points are:

    1. Security and knowing WHO will be able to access the data needs to be clearly outlined and guaranteed

    2. The PCEHR needs to be easy to use and not ADD an additional workload for doctors – I agree with Dr. Karen Price’s point of ideally being able to sync the data with existing medical software like Medical Director, ZedMed and Best Practice.
    A concern of mine is that this will simply increase a doctor’s or allied health practitioner’s already busy work-load. If the patient is in control of what is in the record and what is seen and by whom, then the GP must still record everything as normal in the regular notes. It also brings to mind those patients who bring in long and detailed lists about the various symptoms they have been experiencing in the last several weeks down to the minutia – will they be able to add these things as diagnosed medical conditions after Googling a set of symptoms and self-diagnosing?

    3. I definitely agree with slowing the process down – what is the rush? Why do things just for the sake of doing things, and spend money just to look as though we are doing something?! Let’s get it right the first time. Look at the countless examples of money wasted on rushing to implement new things, for example the HealthSmart debacle, with an over-run of costs of over $140 million at hospitals in Victoria: http://www.itnews.com.au/News/301410,victoria-kills-healthsmart-it-project.aspx

    4. Agree 10,000 times with Karen’s point of the need to guarantee confidentiality for adolescents and mature minors, otherwise this is sure to increase risk by marginalizing at-risk teens. It is difficult enough for them to make it to the doctor and be confidently reassured that the consultation is kept confidential (with the usual exceptions), so if there is any risk that a parent can then look up their record, adolescents like this will not engage. Not to mention the medico-legal mine field of broken families undergoing court proceedings and potentially child protection cases.

    Thanks again for a great post!

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  10. Thanks Edwin and everyone for your insightful comments.
    My main concern right now is privacy. It wasn’t – I thought that if we can get the privacy around internet banking right, then we can get this right, too. The NSA/PRISM thing has made me look at this in a new light. It seems that accessing our internet cables is part of our international agreements (See http://www.guardian.co.uk/world/2013/jul/12/telstra-deal-america-government-spying?INTCMP=SRCH). The Australian government has already proposed internet monitoring legislation, though it’s very unclear what this will entail. Given how valuable a single repository of summary medical data would be, to private firms wanting to come in and provide services (See this example fromthe UK http://www.guardian.co.uk/technology/2013/may/17/private-firms-data-hospital-patients?INTCMP=SRCH) and in security (I can imagine a government doing a search for, say, “burnt hands” to pick up a bomber, or seeking conditions associated with DNA found at a crime scene – I know, I should write a novel!). I wouldn’t think this would be hacking, but would be negotiated in Free Trade Agreements, and there would need to be a cast iron guarnatee (!) that this couldn’t happen. I feel like I’m being paranoid, but unless it’s raised and then watched for, it’ll could happen. (Maybe not – happy to be told it couldn’t happen with very good reasons why not!)

    The issue around adolescents is a really important one – this also has implications for consent around elderly people and their relatives (including power of attorney etc.) and people with mental and physical disabilities and their carers. There may also need to be issues dealt with around violence in the home – partner abuse, elder abuse and child abuse.

    I’d like to see equity issues built in and reported on routinely. There is a digital divide (perhaps narowing, though many people are using phones not computers to access the internet, and I don’t knoiw how LCEHR deals with this. But if not tackled, then the PCEHR has the ability to worsen discrepancies in care – faster, more reliable care (perhaps more tacit approval) for patients with a PCEHR.

    Ultimately, I’m not sure that everyone is agreed on what the PCEHR is or what it’s for – is it a summary, a proxy medical record, is it for the patient, for the doctor, for an emergency department? Done well, it could be really good for information continuity and for patient engagement.

    Thanks for the opportunity to comment

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    • “Ultimately, I’m not sure that everyone is agreed on what the PCEHR is or what it’s for – is it a summary, a proxy medical record, is it for the patient, for the doctor, for an emergency department? Done well, it could be really good for information continuity and for patient engagement.”

      Well said. The problem is a classic IT 101. If you don’t know who the system is for (patient or expert clinician) you won’t get the system right. You simply can’t build a system that works optimally for both types of users. Falling in the middle it is fatally compromised in my view.

      David

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  11. I don’t think you’re being paranoid. I have similar concerns about the privacy of data depositories given the ease with which Chinese government sponosred hackers have accessed databases belonging to the likes of Google, who presumably have reasonable security measures. The recent revelations about how easy it was for Rupert Murdoch’s employees to bribe UK police and officials into accessing data also make me wary of having my personal info in a PCEHR depository.

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  12. I think the above sentiments, and all your comments just make good sense.

    Equally having more consultations now is like painting lipstick on a pig.

    I think the “concept”, especially for my patients who are “frequent Fliers”at ED, those with chronic diseases, the disabled for whom a really good health summary would be of great assistance to everyone in managing their care.

    Unfortunately I simply cannot get the PCEHR to work. The process for approvals is slow, the security hurdles seem to be a barrier to even enabling the system in the first place.

    What I really like is a touted robust communication backbone that allows for secure transmission between Hospitals, GP’s and other care Providers systems such that we can seamlessly get the data we need when we need it. (I understand that the E Health Backbone that is enabled has this as its goal)

    It shouldn’t matter so much who holds the data if it is accessible with appropriate consent and privacy maintained – why the cloud, why not the GP’s system with appropriate support for GP’s to maintain said data.

    How much would a decent Hardware firewall cost for every GP (Certainly not Billions). What if we let Frank Pyefinch and his ilk have a go at a bit of innovation in their systems that would allow appropriate access to “Opt in” Records as appropriately enabled by GP and their patient?

    I spent some time recently with Boffins in my State Health Department demonstrating how much data they have already in their repositories and how easily it can be pulled together to further health care for patients. Consideration of time limited or consent enabled access to Hospital records, as clinically required to continue care, is as easy as a Web enabled Hyperlink.

    I think that we already have a robust system and the PCEHR should value add, but at present, in its current form it is weighted down by excess administration, murky implementation pathways and cumbersome security structures.

    I think they should have developed some overarching principles about access, governance and the structure of data templates then thrown it open to private enterprise – I think Australian GP Software providers and market leaders worldwide. probably a bit late for that now though.

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  13. All good points

    Many of these raised on just4docs.com, the turgid forum for Oz docs

    …and the response from NEHTA?

    Bureaucratic doublespeak.

    We speak Plain English, Govt does not.

    It is not a happy marriage

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  14. Needs to be:
    Doctor/ patient led and easy to access and safe (private): government funding that’s all!
    Clinically relevant: best use will be for chronic disease/ complex confounding co morbidity and polypharmacy: summary as per RACGP guides is a good baseline.
    Worst case scenarios are RACF patients after hours (no regular GP cover- that’s another critical issue) and ED revolvers.
    Let’s measure where the information path breaks down and how it impacts on patient quality.
    (Dipped my toe in this week: uploaded one patient at her request – certainly had complex medical issues – have to say the process was easy).
    Most of the conversation seems to be about General Practice: generally our surgery IT is 10 years ahead of any other health providers (read state health and RACF)
    F

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    • One of the concerns for clinicians is liability – and lack of indemnity insurance. Currently, if an organisation cancels the particpitaion contract the liability clause survives termination. Removing the data from the cloud would be the safest option from a clinician point of view, but obviously not in the best interest of patients. At the moment the government has the IP rights of all the data, not the clinician or the patient. I’m not sure how to solve this problem, perhaps the whole contract needs to be re-written.

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  15. I think your points are all valid Edwin. The problem with the PCEHR is that is a solution in search of a problem. Like all government programs it will chew up millions of dolars before being discarded as an expensive mistake. I have absolutely ZERO confidence in government to make anything this complex work

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  16. Edwin, great post and awesome comments. I now feel reasonably more educated about the frontline issues…than a week ago!
    I work in remote fly in settings, with areas using just paper records and others using MD3 in a briefcasing format.
    Online access to a nation wide record is simply impossible for some remote areas where regular services are still delivered,
    I agree that there is great potential benefit as Ewen says.
    But to me, it seems far too complex right now and ill conceived in delivery/format.
    In many ways this may further increase the health care disadvantage between rural and remote tax payers and metropolitan citizens.
    I also fear that same gap will widen for NESB, mental health clients and others who do not readily or easily access online information due to socioeconomic disparity.

    I personally dont think you can ever fully guarantee privacy of the information. You can do the best you can but it will always be vulnerable. Society must decide if this is acceptable.
    A large national online medical information database is a very tempting target, make no mistake.

    Finally Mel summed it best to me when she said, why the rush? Whilst not perfect, the current information systems are by no means awful and causing large patient safety concerns.
    Medicine is not and should not be about perfection. Sure it should always strive to do better. But the arguement that the PCEHR will do better is far from convincing right now.

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  17. Dear All,

    I am humbled by all your knowledge of the ins and outs of the PCEHR. As a small rural parttime practice, time not only equals to money, it also equals to sanity, and I have not studied the details like many of you.

    All your suggestions, especially those of patient consent to data use, and limit of the data use by others, are very valid. A 24/7 helpline with no waiting times is an excellent suggestion. The record does need to be resistant to hacking, but patients also need to know it could theoretically be hacked. Definitely needs to be controlled by the child from 11 onwards, or in some cases anyway.

    I am in favour of an eHealth system. My town has a high transient population and having their past history and lab tests at my fingertips would be wonderful for them and us. Grey nomads could stay on Warfarin. The possibilities are endless.

    Because of these possibilities, I signed up as soon as I could. (Initially I panicked, as I saw in October 2012 on the ehealth consumer website that they were able to be created from 1 July 2012! I thought I had missed the boat. Made me laugh afterwards – only created my first one about 1 month ago!)

    As mentioned above the process was atrocious, and without my IT/practice management support person (Matt Gilchrist) I wouldn’t have stood a chance of working it out. Not using Medicare numbers, but a new number (HI), seems an unnecessary complication. All the new acronyms were so ridiculous they also just made me laugh. My receptionist, the RO, started to salute every time that I, the OMO, walked into her office! I still don’t feel competent explaining the difference between a HPI-I, a HPI-O and a HI number, and also am completely unsure what to do with the NASH certificate – I already have an individual and site certificate! The latest hurdle is the $55 Argus commissioning tool, and getting it to run, and getting through to the help desk when it doesn’t…

    Despite all those hurdles I am now able to create them using Best Practice. I would be happy to include creating a PCEHR in a consultation, but it would need to be remunerated. An item number for creation, and an item number for syncing would be appropriate (and syncing itself would be essential). If the government wants us doctors to use it, they need to spend a smaller part of their millions on people making up new numbers and acronyms, and more on the people who actually do the essential work.

    All my patients have been aware I can do PCEHRs for 3 weeks now. I look after a wide variety of patients (as we all do), all colours, ages, sexes and layers, and only 1 of them has signed up so far. Some are thinking about it. Just the sheer thought of having to tackle the new human services website seems too much (and I can’t blame them, I couldn’t navigate through it to save my life). The paper option or phone option don’t seem any more attractive.
    So definitely the suggestion of a ‘patient and doctor consent – create records’ button sounds superb, and will improve uptake.

    I am in favour of adding lab tests, but once again it needs to be just a press of the ‘sync’ button.

    The thing I don’t yet understand, is whether Emergency Departments will be able to access it. I have a number of patients on Pradaxa, and if they came in unconscious into ED, access to that information would be a great benefit.

    The most essential thing to me is simplicity. I don’t have time to untangle above mentioned ‘double speak’, and neither do my patients. Some are illiterate. It needs to be an easy process, scrap all the acronyms, call the thing something other than a ‘PECCER’, and pay doctors to decide together with their patients whether they want one, make it simple to create and update one. Have some clear and sensible rules about security and legal issues, and make sure all involved are aware in advance.
    And above all don’t make it an election issue, every step forward will then be followed by 2 steps back!

    Nadine Goodman

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  18. My iPad syncs to my Macbook, either by cable or iCloud

    I just press a button

    I dont worry about acronyms, compliance….

    It just ‘works’

    The EHR is rather more complex…but needs to be as seamless and unobtrusive as this

    It aint, so I wont use it, nor will my patients.

    Simple

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  19. Thanks Edwin

    Here is my list, sorry I am new to these shores but interested in the state of play on this issue. Doctors need to take a lead on this important issue or we will find that managers and legislators will create a system which is not usable or clinically useful, but creates privacy issues that will be hard and expensive to retract. We should recognise the potential benefits for patient safety and care that a functional system of sharing patient identifiable information with fellow clinicians allows

    1. Define the scope and purpose of the record – specifically to aid the provision of direct patient care
    2. Sort out the building blocks first – improve the quality of current records
    3. Clinical coding – specify the use of codes, how about switching to SNOMED?
    4. Interoperability of systems – set a standard for clinical software systems that improves information sharing and functionality
    5. Consider using local records as the repository of the record – dont store the data in the cloud or a centralised database, but only extract from various local clinical systems when it is required. Access to a good up to date local record is all that is required
    6. Learn from international teams who have been working on the information governance issues over the last few years – to avoid making the same expensive mistakes
    7. Define access controls to clinical records in terms of the role of the clinician – set up systems to monitor usage to identify inappropriate access
    8. Give patients a control access key to their records
    9. Government to set penalties for inappropriate accessing of records and to underwrite any medico legal costs for GPs
    10 Government to specify that identifiable patient data will not be available for management or research purposes.
    11. Create some codes for dissent and level of dissent for patients to be able to opt out of sharing information

    Hope this is helpful and good luck with your meeting this week!

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  20. Huge list preceeds my comment and skimming through it I may overlook that I am duplicating things but here goes:
    1. If we are to use this beast it must be:
    a. Less complicated to configure and
    b. The people who want to implement it need to have support systems and people who actually know their elbow from their …
    2. The public need to be fully aware of how the Health care Organisations and individuals who sign up have signed a 16 page document that some some very important caveats and undertakings regarding ownership and stewardship of records – the punters really have no idea how much we may be selling them out
    3. There need to be more accountability in emergency cases where the record is opened up – currently the only thing linked to this action is the HP-O. In a hospital department or large GP clinic this could mean dozens of potential unrecorded people accessing the records which makes a mockery of all the hot air surrounding the privacy issues.
    4. They need to advise us how they will get private specialists to use this system – huge numbers of them still use Dictaphones to record their notes and will pass their secretaries the PKI Dongles and passwords – likewise I would doubt that most GPs would get new Dongles each time a Staff member moves – it is going to be a dog’s breakfast of shared Dongles and passwords despite all off the red tape. The system is useless if we cannot get the Luddites involved and they will not do it unless they are paid handsomely
    5. They need to stop the silliness of being able to use aliases and pseudonyms and of people having different names for their IH record and their Medicare/DVA record – another layer of complexity that we simply could do without

    So perhaps this is not my add-on to the wishlist but more my grumbling about the various bits that I have tinkered with and that has p’d me off

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  21. Well, aren’t I late to the party! A serious who’s who of #SoMe savvy GPs in the comments list here…

    Like most things in life, all the best ideas are never mine and I’ve enjoyed reading everybody’s comments. I would echo many of them. I am far from an expert in the PCEHR – my current practice only went computerised about 6 years ago so the e-health stuff is going to be a little way away yet. If I can get through a month without the server crashing and having to revert to paper notes, that would be a breath of fresh air…

    I was surprised to read that extra money is going to give us the extra feature of pathology and lab tests… woop-di-doo! Slightly appalled that this was never part of the plan in the first place… it makes me realise that the PCEHR is just going to be a slightly more convenient and (maybe) more up to date ‘Health Summary’ that is just available more hours in the day than what we do currently – request a summary from the patient’s previous GP. Meh…

    Gerry, Mel, Tim, adolescent privacy a big deal, I agree.

    Tim, Apple has ruined me for other IT stuff – it’s pretty hard to justify a massive, confusing, clunky system when I can change an entry on my iPhone calendar and it appears on my computer, the laptop, my iPad, my wife’s iPad and her phone as well in the space of about 5 minutes. (Eek too many iDevices…)

    Edwin, I’m glad they’re coming to you. Otherwise you’d have to bear the cost, which might not be tax deductible anymore 😉

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  22. 1. No doubt each patient must be given the explicit opportunity to decide whether each and every lab or imaging result will or will not be uploaded to their PCEHR! It is not the electronic operation of the computer, it is the human interaction that is time consuming.
    2. There simply needs to be an alternative. One should be able to download all the information that you want another doctor or a hospital to have access to, on a ‘message stick’. A simple USB stick that you can carry on your wallet. Those patients who really want a ‘personally controlled electronic health record’ can have one. Completely private.

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    • That is certainly another big flaw in the current design – the shared health summary is not interactive – it is rather like a big pdf document. If the patient asks us to upload in 2013 but ask us to leave condition a, c and f out of their list we will need to police ourselves each and every time that we want to change the uploaded document – currently you have to remove the last uploaded one, create a new one that includes the changes that you wanted to add (i.e new condition/drug) and then very carefully compare the historical part of the document with the original request to make sure you have not accidentally uploaded any old stuff that the patient had asked you not to – you would off course have to look at all previous versions of the document before you upload because who knows how the punter may have changed his/her mind each time. This is how my understanding is of how MD users have it at present. I believe BP users do have a tickbox next to each item in the desktop software’s summary list which is a bit better but once again, what is to stop the punter from changing his/her mind on an item and if it is a complex multi-page summary slip-ups are bound to happen. The nature of the system is that such an error could then spread virally to a huge audience – this is an inherent risk in record keeping but the current design leads itself to this happening which IMHO is a serious design flaw

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  23. Thanks Edwin for your active position in this.

    I believe I’d agree with most points stated above.
    I am quite ignorant but I have to admit the NSA/PRISM affair woke me up.

    A e-helath record as far as I am concerned should be:
    -clinician focussed, with a central role for the GP, who also is aware of what is hidden or not.
    -as simple as possible
    -real time information about medication (changes)
    -problem list
    -allergies
    -pathology
    -accessible only by clinicians and the patient
    -visible only by the the above mentioned.
    -patient and professional can opt out at all times and file then being ‘deleted’ and unaccessible.

    Like

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