*The below text is an excerpt from the complete document. Please read the PDF for the full submission.

CHF welcomes the review into the Personally Controlled Electronic Health Records (PCEHR) System. CHF has undertaken extensive work on eHealth, particularly in relation to the PCEHR. Our submission draws on consultations with our membership, which includes organisations advocating for disease specific groups and networks, state and territory peak consumer organisations and individual consumers. CHF’s submission also draws on consultations undertaken through our Facilitating Consumer Input on the PCEHR Project, as well as previous submissions to consultations relating to the PCEHR. CHF also conducted an eHealth consultation in Feb 2012 as part of the Community Quality Use of Medicines and Medical Tests (CQUM/T) Project.

CHF’s response focuses on the following areas for the purpose of the Review:

• CHF’s consultations with key stakeholders during the development phase of the PCEHR;
• Barriers to increasing usage in clinical settings;
• Standards for terminology, language and technology;
• Key patient usability issues; and
• Improvements to accelerate adoption of the platform.

The PCEHR and other eHealth initiatives can provide important mechanisms to improve the safety, efficiency and effectiveness of healthcare, as well as providing a way for healthcare consumers to manage their own health. The ‘personally controlled’ aspect of the eHealth record is what makes it such a powerful consumer resource. It engenders consumer confidence and this is reflected in the strong consumer interest and registration for the record, which stands at more than 900,000 as on September 2013.1

The design and implementation of the PCEHR system is only the first step in delivering comprehensive eHealth services for consumers that will empower them to manage their own health. While these systems will also enable the transfer of information between practitioners in a more efficient and effective way, from a consumer perspective an important mechanism that they provide is for consumers to convey information regarding their healthcare to health professionals.

eHealth creates opportunities for more accurate and instantly available patient data. This is a development which has the potential to empower patients and improve individual health outcomes. There is an increasing body of evidence which shows that patients who feel well-informed and able to participate in treatment decision-making are more likely to experience favourable outcomes.

CHF research supports the position that improved communication between clinicians and consumers overall contributes to both increased adherence to treatment regimes, improved long-term health outcomes, increased patient satisfaction, faster recovery, reduced emotional distress, a lower level of pain relief used and in some cases a reduced length of stay in hospital. The PCEHR is a vital tool in enabling this essential clinician consumer communication, and ensuring overall better health outcomes.

Consumers value the PCEHR and are supportive of its ongoing development. However, keeping in mind the current challenges around implementation, there are areas that will need a stronger emphasis and focus to ensure ongoing consumer confidence and trust in the eHealth system. It is vital that the PCEHR is a functional system that meets the needs of consumers.

Key concerns for CHF include consumer control, oversight and the importance offunctionality in the rollout of the PCEHR system. CHF’s submission also calls for greater accountability and independence in the long-term governance arrangements, reconsideration of the implementation model and above all consumer control.

Consumers have told CHF that they support the PCEHR system and have highlighted the importance of access, privacy, security and governance, including:

• The importance of consumer participation in the governance of the PCEHR system;
• The importance of transparency and accountability in the operation of the PCEHR system;
• The need to engender robust consumer access controls; and
• The importance of consumer ownership of the PCEHR system.

Recommendations

1. Adoption of an ‘opt-out’ model in light of the overwhelming evidence and in the interests of genuine consumer control of their health information. Consumer access and control would remain fundamental to the acceptance of any ‘opt-out’ model.
2. Move to an independent governance arrangement that includes consumers. Specifically:
   1. the governance arrangements to be reviewed with a view to appointing an independent PCEHR System Operator; and
   2. the governance arrangements include an Independent Advisory Committee that includes strong consumer representation.
3. CHF recommends the immediate resolution of current barriers that prevent the adoption of additional functionality in particular the incorporation of pathology results and diagnostic imaging results onto the PCEHR.
4. The ‘Personally Controlled’ aspect of the eHealth record to remain central to any development and implementation of the PCEHR.
5. CHF recommends the strengthening of access controls for consumers to moderate access to their PCEHR. CHF considers this measure essential to consumer confidence and participation in the PCEHR system and recommends further consultation on this issue.
6. Continuation of provisions that allow access controls to be overridden in situations where the individual requires emergency care. However, this should only occur in situations where the individual is not capable of providing or communicating consent.
7. A revision of the PCEHR Change and Adoption Strategy to include improved functionality of the PCEHR system and initiatives aimed at engaging consumers and clinicians in its uptake and effective use.

The Opt-In Model

Throughout a range of consultations on the PCEHR, a number of submissions from diverse groups expressed concerns that if the PCEHR operated within an opt-in framework, a large portion of the general public would not have immediate access to the record. As we noted in our earlier submissions and briefings on the subject (Attachment A), this would result in a low level of confidence in the system and lack of critical mass to ensure its success.

Considering the current stage of the PCEHR roll-out and the lack of meaningful usage of the record, CHF reiterates its view that the PCEHR system will be more successful if it is to be opt-out, rather than opt-in. Our extensive consultation with consumers, consideration of the positions of other key stakeholder groups and review of international experience support and consolidate this position.

CHF continues to be of the view that an opt-out system, provided that strong consumer control and a robust privacy system are central to the development and use of the PCEHR, would have considerable benefits to the system currently being pursued.

CHF has previously highlighted that there are a range of benefits that are likely to result from the implementation of an opt-out system, as opposed to an opt-in system, including:

• Wider uptake of the system, increasing its value to health professionals and, consequently, their willingness to use the system;
• ‘Healthy’ consumers who might not have signed up to the PCEHR under an opt-in system will be more likely to have a PCEHR, allowing access to health information which could be of particular value if they experience an illness or injury that necessitates acute or ongoing treatment;
• Vulnerable and disadvantaged consumers will not have to actively opt-in to the system, allowing them to share in the benefits without facing the potential obstacle of signing up; and
• Mechanisms will still be in place to support consumer choice, as opting-out will remain an option for those who do not wish to participate, and other consumer access controls will also be in place.

It has also been CHF’s strong view that the benefits of an opt-out system will be far increased if the system is also opt-out for health providers. An opt-out system for consumers will not deliver the same level of value if the system remains opt-in for health professionals. This can be observed through issues with the UK’s Summary Care Record, where less than one percent of patients opted out but access of the records by general practitioners was very low.5

While consumers are likely to benefit from an opt-out system, rigorous governance, access and privacy protection measures are necessary and absolutely crucial to ensure ongoing consumer participation.

Consumers want protection and confidence, comprehensive consumer information to ensure informed participation, and straightforward and easily accessible methods for opting-out should they not wish to participate. An opt-out model is acceptable for consumers only if the personally controlled aspect of the record remains intact.

For consumers to have confidence in the system, and for participation to be informed in the context of an opt-out system, there will need to be:

• Rigorous and accountable governance structures in place to oversee the system;
• Absolute adherence to the ‘personally controlled’ aspect of the record;
• Significant collective effort to ensure that informed consent has been given, particularly once consumers have had an initial interaction with the system; and
• Detailed, easy-to-understand information about consumer control, including how to opt-out (which must be straightforward) and how to control which information is uploaded to the record and who can see that information.

CHF appreciates the challenges that would be presented by a change to an opt-out model at this stage. However, CHF considers that this change in direction does give the PCEHR system a much greater chance of success.