PCEHR-PrivacyModel

PCEHR Privacy Model This is a classic where "it's all a bit hard so we will throw it over the fence to the populace". Doctors are never going to trust it and hence use it while the patient has control. I can site visits I have made to doctors recently as classic examples of this.

Another issus is the hype. Electronic is far more secure than paper. Look at the footballers who got into trouble over drug use as their paper files were found outside the Rehab Clinic. <There is no hard evidence to suggest that e-systems will replace paper ones. There is hard evidence to suggest clinicians share user credentials and use paper print outs and then transcribe information into e-health systems. The result is the same as if using paper. Then there is the fragmentation issue linked to running a parallel healthcare information system as practitioners will depend on practice records and UIs. I don't think there has been enough consideration of human factors with regards to the ConOps too. Finally, I think making generalized, motherhood anecdotal statements is not useful at all to health authorities re the PCEHR. People are stating opinions. I want hard scientific evidence, not anecdotes and hearsay. Juanita> comment here> (T. Hannan-here are some resources on ths topic. By one estimate, 85 percent of all computer security problems involve employees in the organization.”R.L.Simpson, 1996. Security threats are usually An inside job. Nursing management 27(December);43 Security of medical Information:The threat from within. J Anderson,Maria Brann. MD Computing. March/April 2000. 15-17  "The major vulnerabilities are related to inappropriate use of patient-specific information by health workers who have access to those data as part of their regular work. Such risks are greater when data are stored in paper charts.”(The evolution of health-care records in the era of the Internet. EH Shortliffe. Semi-Plenary. MEDINFO Seoul, August 1998)  (T Hannan) Juanita the comments re e-systems vs. paper systems are very valid. We have the conclusions such as Brent James in his QMMP project on quality. “The foundation for quality patient care is information - comprehensive, accurate, up-to-the-minute clinical information, and is not possible using current paper-based medical record systems.” //Brent James IHC, QMMP project. Chicago, Illinois. 1989//., but we also need to understand/comprehend the major changes here will be societal and cultural especially with the physicians component of care. This was pointed out by Lucien Leape in his review "5 years after to Err is Human" in 2005. Other "clinicans", in particular nurses, pharmacists and patients have moved forwards to use e-health clinical information management tools.

Several points for consideration: 1) A national approach must be taken, this is already highlighted in thedocument and I certainly support this view. (Already NSW and VIC legislativedifferences are making this process difficult in placed like Albury Wodonga) 2) Patients must be able to access their information easily and securely,which I think the document covers reasonably well....however... 3) Where will clinicians write unfavorable comments in this record, ie this patient has drug seeking behavior.....or patient is likely suffering from afirst episode of schizophreniform psychosis. Should patients be allowed to see this? If patients could see this, they would simply switch this off from viewand hence many of the benefits of a PCEHR would be lost due to the record beingartificially cleansed. If this occurs, will there be the appropriate level of integrity in the record, or will clinicians just feel that the records are not sufficiently true and accurate and therefore continue to keep and maintain their own paper-based records? The reality of the situation will be the PCEHR will work well for a good number of people, however certainly not for everyone.I guess the trick with the whole process is to work out now which demographic groups this will not work with and make preemptive corrections to this process now. The reality with any new and complex process is that there will be thatmany potential problems highlighted that may in fact turn out to quite manageable, and there will be issues not yet considered that may come back tobit us further down the track. For example, I wonder how many years away itwill be before private health insurance companies will want to start purchasing de-identified information from these records to help better model their policies. Equally governments may want to start extracting information from these records. This is not to say that this is all bad, it just we need to think about these issues now to ensure the appropriate balance of legislative policy to put into place. Andrew C

We must remember that to date professional records and patient held records have had different levels of protection and security. How all this might work in a PCEHR based world is a HUGE topic that will need a great deal of consultation to avoid all sorts of un-intended consequences and damage. Get this wrong and the entire PCEHR is even more doomed that I already think it is! DM

If clinical workload is hampered then the system will go the same way as has the UK. Clinicians are already time poor and if they need to learn anything, including terminology, that influences the number of patients seen per day then that will be the end of the national system. We need to remember, this system is designed to fit on __top__ of existing systems not to replace them. Logically this translate into more work for clinicians and/or their staff. And if staff are transcribing clinical notes into the system then we are back to the paper issue. The there is the issue of "the cloud" and the way this will impact on success or failure of the program. The cloud is not a privacy enhancing technology generally. Banks are having heaps of trouble in this domain. Patients wont buy a PCEHR from commercial vendors if they cant read it all- and clinicians wont use the PCEHR system if there is a productivity cost. Human factors issues are completely overlooked in the ConOps.

Re Andrew C's comment, Andrew Howard spoke of this last week. Although not planned for the initial PCEHR build, it looks likely that the data will be accessible to researchers in the future based on informed consent. This is simply a matter of using a tick box on the PCEHR as is the NZ system. There are no privacy issues here.

Really the entire matter of privacy comes down to risk vs benefit. Nothing is ever guaranteed as private but if you admit that and then point out benefits linked to the PCEHR, then I reckon you will be successful than if you don't.Many patients would be happy to take the risk for the health outcome benefit. For me, this all centres on clinicians and their workflow, not patients when we are open with them.

JF

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