There are two Design Notes in the final ConOp:
"Design notes: Advance care directives allow individuals to make choices about future medical treatment in the event they are cognitively impaired or otherwise unable to make their preferences known. The consequences of acting on an individual’s preferences, as set out in an advance care directive can be significant, sometimes final. At this stage, the directive itself will not be uploaded on the basis that, if uploaded, it would raise issues of currency or contain legal implications that are outside the scope of the current work. Future work will look at including the directive itself (see Section 2.8)."
From a system design perspective, this is not a major issue. It's just a document.
Whichever way it is resolved, the system won't change much.
However, the second one is much more fundamental.
"Design Notes: Limiting access to clinical documents is challenging.
A number of the controls described above aim to accommodate the need for all individuals to set some basic controls around their PCEHR. It is recognised however that some individuals may wish add information to their PCEHR over which they wish to apply tighter access restrictions (and closer management). It is also recognised that concerns have been raised by healthcare providers about the utility and potential impacts of this feature.
However, failure to include this feature may result in some individuals changing their behaviour (e.g. withdrawing participation, refusing to grant access, withholding information, etc.) to work around the absence of this feature. Therefore in line with the central concept of a personally controlled EHR, ‘limited access’ has been included as an advanced feature.
The inclusion of this feature means that improving health literacy will become more essential and individuals need to be educated about the consequences of limiting access. As a result, the individual is required to assert they have reviewed the educational material around access controls before using the more advanced controls.
Implementation of the limited access feature has also been acknowledged as challenging. The proposed approach does not require the source system to support the feature and limits the ability to change the status of a clinical document to being accessible only via the consumer portal. The design trade off means that only individuals who are able to use the portal and have set up a PACC/PACCX will be able to access this feature.
With regard to visibility of ‘limited access’ information, users will not be aware of its presence if they do not have access to it. This decision was made so that the individual is not pressured into revealing the limited access information."
This one is far more serious. The PCEHR is designed to facilitate access to a patient's health information. It is intended to improve the delivery of health care, however, concentrating health information and improving access to it is likely to have the unintended consequence of exposing that same health information in ways that are unacceptable to many citizens. There is a conflict of interest here. That between trusted, practicing medical professionals need full access to as much information as possible on the one hand, and citizens, who don’t want un-necessary access to their private data on the other. There is also a range of access needs in between that required by the trusted, practicing medical professionals and that of no un-necessary access. The solution that NEHTA has come up with – an advanced feature called “limited access” - is a half-baked idea that will not address the problem and will, IMHO, alienate many citizens. Limited access does not deliver a range of access controls, it can only be set up by savvy net users and it is a significant change to the data architectures in the products contained in the NIP’s solution.
Changing a data architecture is not a simple exercise. It’s like moving a house three metres to the left, once it has been built.
Referring to it as a Design Note, is also most inappropriate. It's a part of the problem and needs to be addressed as such, not as a solution option.
Managing Health Information is a very difficult, social problem. I don’t think it has yet been solved. And it won’t be solved by technologists.
----- End Post.
David
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