Positive Life NSW Blog

Do you want a PCEHR?

Posted by on in Advocacy and Policy

Image: medical records with stethoscope

The Commonwealth has committed to developing a personally-controlled electronic health record – or PCEHR.

The PCEHR is designed to:

  • Improve your care by enabling multiple healthcare providers to access your key health information, where and when it’s needed.
  • Consolidate information about your medicines and provide safer and more effective treatment by limiting adverse events and drug interactions.
  • Enable you to access your healthcare information and review the content.
  • Improve diagnostic and early treatment.
  • Improve care coordination for people with chronic or complex conditions by enabling your healthcare team to make better-informed decisions about your care.

From July 2012, one year from now, you’ll have the option to register and choose to have a PCEHR. We’ve been told that no one will be forced to register and that it’s an opt-in option. If you choose to participate, you’ll be able to set your own access-control settings. This means that key pieces of information will be able to be viewed by the healthcare providers that you authorise.

Health snapshot

The PCEHR will provide a series of desktop views and will allow your authorised healthcare providers to see an overview of your allergies/adverse reactions, medicines, pathology tests, medical history, immunisations, directives and recent healthcare events.

This ‘Consolidated View’ is intended to provide a snapshot of your health status and assembles information from a range of clinical documents, including Shared Health summaries, Event Summaries and Discharge Summaries.

The consolidated view will include:

  • Name, date of birth, sex, Individual Health Identifier, contact details
  • Your Nominated Healthcare Provider
  • Consolidated lists of:
    • Allergies/adverse reactions
    • Medical history (from the Shared Health Summary and other clinical documents)
    • Medicines – prescription/dispensing history
    • Immunisations (from Shared Health Summary)
  • A list of clinical documents
  • A list of recently changed clinical documents
  • Directives, including organ donor status
  • A list of recent healthcare events and dispensed medications from Medicare Australia
  • An ability to search and filter clinical documents.

Nominated healthcare provider

It’s recommended that people nominate one healthcare provider (this could be your GP/S100 prescriber) to maintain the information in their Shared Health Summary. The information from this summary will then be included in the Consolidated View. People with HIV should note that the Consolidated View will show a list of recently dispensed medications and prescriptions.

The system designers say that the PCEHR will treat all your clinical documents as potentially sensitive information and will provide you with a number of options around how each document can be handled. For example, there will be options to:

  • Include or exclude specific individuals and healthcare organisations from viewing your information
  • Limit access to clinical documents. These three options are:
    • General access
    • Limited access
    • No access

There will also be an audit log of all access to your PCEHR.

Driving the PCEHR and using its control settings will require considerable knowledge and thought. This is a system with inherent complexities. For people with HIV who may be sensitive about disclosing their health conditions to different healthcare providers (for example, HIV and HCV status, STI and mental health diagnoses, drug and alcohol histories and dispensed medications), the system has additional issues to be overcome.

As we understand it, if you give access to a Healthcare Provider Organisation such as St. Vincent’s Hospital, you will also give access to all the healthcare professionals in that organisation, despite the fact that they may not have a clinical relationship with you. This would be an issue for many people with HIV who are selective about which health workers they disclose to. For reasons of privacy, we believe that individuals should be able, for example, to select their HIV treating specialist and exclude other healthcare providers from within that same organisation. People need to think carefully and ask questions of their organisation-based healthcare professionals about who will be able to access their PCEHR if they agree to upload documents to it from a consultation.

Informed consent

Making an informed decision about whether or not to have a PCEHR and controlling access to your information will be crucial to personal control and confidence in the new system. If you register for a PCEHR, it’s worth remembering that the onus is on you to inform your healthcare provider that you do or you do not want a particularly document or type of information loaded onto your PCEHR. Consultations with healthcare professionals, such as GPs/S100 providers, are already time-restricted. People with HIV often have many competing health issues that need to be monitored and discussed with their doctors. The electronic health record will add a further time burden onto the healthcare provider and patient to discuss its related issues. If you have a PCEHR, consultations will have to stretch to include:

  • discussions about how sensitive information is to be treated
  • time to upload clinical documents
  • time to decide who can have access to them.

Currently, no Medicare item number has been allocated to cover this and health professionals will have to squeeze all these discussions into a standard consultation.

For people with depression, anxiety, cognitive impairment or an intellectual disability, understanding and controlling their PCEHR and giving instructions to their healthcare providers may be frustratingly difficult and burdensome.

Longevity of the PCEHR record

It’s very important to understand that while at one point in time it may be of benefit to you for certain information to be posted onto your PCEHR, at a later date you may not be happy to share that information. The onus will be on the individual to retrospectively review and change the access-control settings for clinical documents that have previously been uploaded. It’s worth noting that while it will be possible to opt out of the PCEHR at any time and suspend your entire record, once information is in the system it cannot be deleted or removed.

It’s reasonable to assume that people with a chronic condition such as HIV – and thus often multiple healthcare providers – will be encouraged to opt in to the PCEHR. Healthcare providers will therefore need to address any privacy concerns raised by patients. In any discussion with your doctor, they should explain the role of the PCEHR, who can have access to your health information and what controls you have to limit access to sensitive information. They will also need to explain that an opt-out option is available at any time in the future. Government agencies also have a responsibility to provide educational materials that clearly and precisely explain the workings of the PCEHR system well before July 2012.

Careful consideration

The PCEHR can offer a number of potential benefits for those people with HIV who manage a range of complex health conditions. Unfortunately, for those who have issues around privacy and who may have experienced stigma and discrimination, any decision about whether to opt in and register for a PCEHR is difficult and complex and needs careful consideration.

If people with HIV are to have confidence in the PCEHR and utilise its potential benefits, they will also need to be proactive and have a thorough understanding of the system’s complexities and drivers. They’ll need to understand the use of the control settings and how types of information can be viewed from within different areas of the health system, including who will have access to their information in Healthcare Provider Organisations (for example, a hospital). For people with cognitive impairments or learning difficulties, navigating the PCEHR and making a decision to opt in will be even more challenging and complicated.

People with HIV will need adequate education and support to discuss the pros and cons of the PCEHR and to negotiate with their healthcare providers before and beyond July 2012. This will be particularly important for those people with HIV who may be asked to register for the PCEHR pilot/trials at St Vincent’s Hospital and in other areas of Australia later in 2011-2012.

Further information

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