There is a new newish report available (only made public a few days ago I am told as it was written as a ‘crib-sheet’ for parliamentarians for the recent PCEHR Debate.):
BILLS DIGEST NO. 100, 2011–12
7 February 2012
Personally Controlled Electronic Health Records Bill 2011
Dr Rhonda Jolly Social Policy Section
The report can be found and downloaded from here:
To me the most important part of the report is the last box and the concluding remarks:
Box 4: brief summary of points of contention
Opt in, that is people choose to register to have a PCEHR, or Opt out, that is people who do not wish to have a PCEHR request to be excluded from the system
- Most stakeholders consider the Government’s option to make the PCEHR system opt in is a mistake because it will be difficult to reach a critical mass of participants. This in turn, will make the system more costly, and patients will miss out on the potential benefits from the system.
- Those who argue for opt in consider that the option will ensure that consumers have more confidence in the system if registration is voluntary.
Consumer control
- Those in favour of more consumer control over records in the PCEHR note that the intention of the system is implicit in its title—a personally controlled records system. They consider consumers will not be confident in the system unless they are able to impose controls on who can access information in their records. They are concerned that a no access control option has been removed from the current Bill.
- Opposition to this view mostly comes from health professions who are concerned that practitioners will be denied access to information which is relevant to the treatment of patients and from accessing information to deal with health emergencies.
Who can be a healthcare provider
- A number of the health professions are concerned that they will not be eligible to be nominated as a healthcare provider. They argue that their services are just as essential to overall patient health as those of medical practitioners, nurses and certain aboriginal health workers, those professions currently eligible.
Government stewardship of private information
- Most stakeholders are concerned about the extent to which bureaucrats in the Department of Health and Ageing will exercise control, at least initially, over the PCEHR system. Objections have been raised also that the System Operator will not be required to take the advice of advisory committees or to provide reasons why it has chosen not to do so.
- The Department of Health and Ageing argues that it is not unusual for the Secretary of the Department to have such power and that placing the administrative machinery of the PCEHR in the hands of a responsible government agency will ensure appropriate governance of the system is achieved.
Rules and regulations
- Many stakeholders are concerned that rules and regulations which will accompany this legislation have yet to be revealed; that in fact there is no real indication of how the system will operate in practice. They consider that draft regulations should have been released in conjunction with the primary legislation.
Financial incentives
- Health organisations and health practitioners, particularly medical practitioners, are unhappy that the Government will not provide financial incentives to assist them in converting systems and establishing records for patients. Practitioners complain also about the overall burden of administration the PCEHR will impose on their practices and organisations.
Timing and limited capabilities of the system
- Medical software organisations in particular are concerned that the PCEHR system is being rushed into operation. They believe that more work needs to be done to ensure that the components of the system function effectively before implementation. They consider the date proposed for implementation should be delayed until the full functionality of the system can be guaranteed.
Risks from breaches of the system
- Some practitioners are concerned that the penalties for breaches of the system are too high and that they will be punished unjustly for unintended breaches.
Privacy
- Many stakeholders have stressed that ensuring privacy issues are adequately addressed is fundamental to achieving community trust in the PCEHR system. A general consensus is that without consumer confidence the system will not succeed.
- Government agencies argue that provisions in the legislation will ensure the privacy of individuals through technical controls, effective and transparent governance and legal protections.
- Opposition to this view notes the potential conflict of interest that may arise from handling of private health information by bureaucrats. Concerns continue to be raised also about how secure consumer health information will be within the PCEHR system, particularly in light of concomitant concerns about possible flaws in the design and proposed function of the system.
Concluding comments
As has been revealed throughout this digest, there are a number of bottom line key issues in relation to the PCEHR upon which the various stakeholders have commented.
For consumer organisations, that the PCEHR ensures the protection of the privacy of individuals is paramount to all consideration of the system. Hence, these groups argue that the PCEHR cannot be successful unless it first and foremost serves the interests of health consumers. They consider that if the system is to do so, there must be assurances that consumers will participate in the system governance, that its administration and operation will be transparent and accountable and that consumers will have access to, and ultimate control of their health information.
Other stakeholders argue that privacy must be compromised in some instances to ensure the efficient operation of the PCEHR. Medical professionals view consumer control as dangerous—both from the perspective that important information may not be available to them to deliver effective treatment and for medico legal reasons.
Further to these concerns, for consumer groups (and, indeed many stakeholders), there is the issue of what will actually be in rules and regulations which accompany the Bill (once enacted). While it is usual for regulations to be made following the passage of legislation, in this instance it may have been circumspect to have produced a companion document detailing proposed rules and regulations, given that sensitive information relating to all Australians is the ultimate focus of the legislation. Previewing such rules and regulations may have alleviated some of the more important concerns which have been expressed about the privacy of individuals generally and the potential lack of accountability, specifically that of the principal PCEHR administrator, the System Operator.
While it is not strictly the subject of this digest, concerns about how the technical aspects of the PCEHR system will function and, indeed, whether they will actually function, have been raised in submissions to the Exposure Draft legislation, to the Senate inquiry into this Bill and in other instances and these represent a bottom line in terms of whether Australia has taken the right approach to e health records.186
Concerns have been raised by the medical software industry about the overall design of the PCEHR system and consumers and medical professionals have also expressed disquiet about certain aspects. As this digest has noted in passing, there have been complains from industry ranging from accusations of ineffective oversight and failure of administrators to acknowledge design flaws, to warnings that the system will not succeed because its implementation has been ill considered and rushed. In terms of rushing the implementation of the system for instance, disquiet over the role of the System Operator noted in the previous paragraph may have been dispelled if time were available to establish a specific body for this purpose before the system is implemented. As noted in the Parliamentary Library paper on e-health, taking time to get the whole system right has worked well in jurisdictions such as Denmark where a series of strategies for an overall e health system have been progressively shaping implementation and engaging health professionals and consumers.
The PCEHR Bill has attempted to address the issues which stakeholders have indicated are critical to their acceptance of the PCEHR and it is clear that consultations have produced some concessions and changes to the original PCEHR proposals. However, despite these compromises there continues to be uncertainty surrounding how the privacy applications and administrative and technical machinery of the PCEHR system will affect those who provide it, those who consume it and those who monitor it. As such, the potential for the system to improve health outcomes, a claim which is rarely questioned, has become almost a secondary consideration in discussions of the PCEHR.
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To me, given the long list of unresolved issues that are raised, what is needed is a detailed set of real consultations with relevant stakeholders to actually reach an agreed position around each of these topic areas. If that is not done I think you can kiss the half a billion spent on this goodbye!
All in all a very useful summary of the issues we need to see discussed and resolved.
David.
On the OptIn vs. OptOut process you make the correct points on a critical mass. It also needs to be pointed out that Opting Out means the 'end user' is acknowledging they are willing to be treated within nthe current error prone health care system. In Kenya with our building of the EMR for the HIV/AIDS epidemic we initially had OptIn with a low % rate of compliance. OptOut now has ~99% testing rate for HIV.
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