Medibank – Exposure draft Personally Controlled Electronic Health Record – October 2011 Feedback on exposure draft Personally Controlled Electronic Health Records Bill 2011 Submission by Medibank Date: October 25th 2011 Contact: Christian Smyth Policy and Industry Affairs Manager firstname.lastname@example.org Phone: 03 86226363 www.medibank.com.au Medibank – Exposure draft Personally Controlled Electronic Health Record – October 2011 Overview Medibank is pleased to provide input to the exposure draft legislation for the Personally Controlled Electronic Health Record (PCEHR). The documentation was released on 30 September and comments on the legislation were requested by 28 October. The Bill outlines the processes by which consumers, health care organisations and data repositories will register to be part of the eHealth system. The Government anticipates that patients will control who has access to their information and should be able to register for a personally controlled eHealth record in July 2012. Medibank and healthbook Medibank is Australia’s largest integrated private health insurance and health services group. We have been providing health insurance to Australians since our inception in 1975 and currently cover 3.7 million members, equal to 31% of the national private health insurance market. In addition to our resident members, Medibank also covers over 200,000 overseas visitors and students and provide access to life, pet and travel insurance. In the last two years, Medibank has undergone a significant transformation, growing the role we play in our customers’ health and evolving into a provider of broad range of health services, including mental health services. We have become Australia’s largest provider of telephone based health advice, triage, counselling and referral services. We deliver these services 24 hours a day, seven days a week across Australia and New Zealand, safely handling more than 2 million calls a year and delivering high quality health advice to more than 25 million people. We deliver the Australian Government’s healthdirect Australia and the Victorian Government’s NURSE-ON-CALL services. Medibank is also the service delivery provider for the Australian Government’s after hours GP helpline, the new national service that connects callers to a GP at times when their usual doctor may not be available, including at nights, on weekends and on public holidays. We also partner with a wide range of clients including public sector healthcare organisations, national and state governments to deliver telehealth services. With almost 15 years of service delivery, Medibank has a track record of responsiveness, excellent customer service, unparalleled safety and quality. The outcomes we have delivered directly result in more appropriate utilisation of primary care and hospital based emergency services. In July 2011, Medibank successfully bid to receive $7.5m from the Commonwealth to partially fund the building of the healthbook personally controlled, customer centric eHealth record. Medibank is extremely proud to be one of the nine pilot programs established by the Federal Government and managed by NeHTA. One of our guiding principles has always been that customers’ information should be captured appropriately and used to help deliver timely and effective health outcomes. healthbook will be a key pillar for Medibank’s engagement with 1,000 of our chronic disease management customers. Those customers will use it to enter both their current status of health and specific actions under a Care Management plan. They will be assisted in the management of their disease by Medibank Health Solutions nurses, who will also be able to view the healthbook so as to support the customer with the activities suggested in the Care Management plan. Over time, healthbook will be made available to Medibank’s 3.7 million customers to enable them to control their personal information, enroll in preventive health management programs and manage their ongoing health. Medibank – Exposure draft Personally Controlled Electronic Health Record – October 2011 Broad considerations While a number of our concerns with regards maintenance of eHealth records may be more pertinent to the legislative instrument that will establish the PCEHR Rules itself rather than this legislation, it would be useful if further clarification could be provided on the following areas: 1. Emergencies. Further clarification is required about what happens when critical health care information needs to be available to healthcare providers in circumstances, such as emergencies. Consumers may choose to protect their data around conditions, such as chronic illness or blood born disease, but guidance on how the patient’s ‘best interest’ should be interpreted when accessing what is essentially hidden information is necessary. 2. Impact on providers Recognising that failure to consult sufficiently with healthcare professionals was one of the signatory reasons for failure of the eHealth system in the UK, this mistake needs to be avoided in the Australian context. Creating and maintaining records for patients for the purposes of the PCEHR and the training required will necessitate a significant investment of time from healthcare professionals and this needs to be factored in, particularly as it may have unforeseen implications for the short-term delivery of health services. 3. Complicated user groups There is currently insufficient information about how access arrangements will work for a number of user groups. Further clarification, for example, about issues relevant to authorisation of guardians and their capacity to act on behalf of their children or wards is also needed as are similar access arrangements for instances where a parent is being cared for by their children or receiving palliative care. Likewise, further consideration also needs to be given to the accessibility and infrastructure requirements for rural, aged, disability and mental health care groups and the requirements of non-English speakers. 4. Liability It remains unclear to what degree healthcare professionals will be held responsible for a patient’s safety based on information established on the PCEHR. Concerns exist about what happens if the recorded information is inaccurate, not up to date or not visible to the healthcare professional. Specific responses to the draft legislation 1. The legislation does not appear to cater for instances where authority has been given to someone, such as an agent or attorney but the person to whom the PCEHR relates is still able to access their record. The legislation should allow for concurrent authorization in such cases. 2. Medibank’s groups of companies may wish to register as healthcare provider participants in the PCEHR system or as a repository operator. It is not possible to comment on the eligibility criteria until the Rules are released. 3. In order to ensure that information is accessible across the PCEHR system the legislation allows for users to use records uploaded by other healthcare providers without breach of copyright. It would be helpful if healthcare providers were not found to have breached moral rights obligations in relation to any failure to credit the original creator of the content subject to that copyright. Medibank – Exposure draft Personally Controlled Electronic Health Record – October 2011 Even though the uploading of these records into the PCEHR system is to a discrete group of authorised users, that group is very wide and it is probable that the uploading would be deemed to constitute 'publication' of those records. Dealing with the moral rights issue as suggested above would relieve those people uploading information from an administrative burden that could work against the ease of use and likely utilisation of the PCEHR system. A similar issue needs to be considered in relation to other obligations that arise from 'publication'. This relates to whether persons uploading records are potentially subject to defamation action in relation to any information that is uploaded and is in fact incorrect. Confirmation that some form of 'good faith' defence exists in relation to defamation proceedings arising from the uploading of incorrect information would be helpful to encourage participation in the PCEHR system. 4. The information stored in the PCEHR system is likely to be of significant interest to medical research centres who would be interested in being able to access de-identified information for the purposes of health and medical research. Provision should be made in the legislation to accommodate any access to health information along these lines. 5. The legislation is too limited in its present definition of “healthcare”. It would be more helpful if it could include clearer reference to prevention of diseases, injuries or conditions. Accordingly, it would be helpful if the definition of healthcare did not imply that the individual must already have an illness or disability: the current references to diagnosis and to treatment of a ‘suspected’ illness or disability are not sufficiently clear. ”Illness or disability” also appears to be too limited in scope: that expression would seem to exclude from the scope of “healthcare” conditions such as the following: a. fertility - as being relevant to any procedure like a vasectomy or the prescription of contraceptive medications; b. the status of a person who is a healthy donor and about to undergo a medical procedure connected with that donation; c. the situation where the PCEHR of a deceased person needs to be accessed; d. the treatment of the fertile partner for conception purposes where the relevant condition affects the other partner; e. voluntary (and not clinically indicated) circumcision; and f. healthcare that is for aesthetic or cosmetic purposes. In relation to the last situation, while there are good reasons that such treatments are excluded from other healthcare legislation relating to funding, there seems to be no reason why clinicians providing cosmetic treatments should not be able to access information regarding their patients' previous medical histories, known allergies and so forth. Private health insurance legislation typically uses the expression “disease, injury or condition”: this has some similar ambiguity in the same situations as listed above, but it does seem at least to be slightly wider than “illness or disability”. 6. There is a lack of clarify as to whether or not the health information of an individual who has elected to cancel his or her PCEHR registration is subject to retention within the system. This would be in line with certain State legislation relating to medical records although the Privacy Act 1988 would suggest it should be deleted as being information that a collector of personal information no longer has a requirement to maintain. Medibank – Exposure draft Personally Controlled Electronic Health Record – October 2011 It would be useful to get further clarification as to the way in which repository operators will be subject to State legislation governing medical records - in particular, when and how they apply. 7. Clearer guidance would be useful as to whether registered repository operators will be obliged by the orders of Courts or Tribunals or as part of discovery or cognate processes under Rules of Court to disclose the PCEHR data that they manage, not just to a court but to other parties in legal proceedings.
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