The questions below were asked at a recent Elicio information session. If you have any other questions, please do not hesitate to send them through to us using the ‘Register your Interest’ pane on the right.
Who owns the repository data once it is integrated?
- Data submitted to Elicio will continue to be owned by the health service (or entity) submitting it.
- Where an initiative that the entity chooses to be part of allows for data to be aggregated or shared by or with another entity(s), the program agreement will specify precisely how this will work. In the past aggregated data have been owned by the organisation operating the initiative, such as a Medicare Local. In the future, we expect that initiatives allowing for the sharing of data will transfer a license to the data under the terms specified in the program agreement.
- Unless expressly allowed through a program agreement no access to or change in control or ownership of the data will occur.
How does Elicio integrate patient IDs across different sources?
The SPINE platform (data repository) allocates a system generated unique identifier to the patient once they are registered to the system. When uploading the details of a patient, multiple identifiers can be attached to this unique system ID. In the case of Elicio, in addition to common methods of identification, details such as Medicare ID, Health Fund Number, Driver’s Licence and Point of Care system IDs could be used. These IDs can then be used by the enterprise master patient index (EMPI) during matching to ensure the correct patient is identified.
Are there any legislation issues to overcome to allow organisations like State hospitals to share their patient data with providers not employed by the organisation, or is patient consent required to allow this to happen?
Yes. Any organisation will have privacy legislation and confidentiality requirements to comply with and these will vary depending on the organisation’s entity type. Improvement Foundation (IF) will be able to provide confidence that there is appropriate protection over access to the data. In addition, the initiative that is proposed will need to clearly state how the data will be accessed, used and controlled. In the case where personally identified information will be disclosed, the individual health consumer will need to authorise disclosure of the data under the terms of the program agreement.
How does the solution integrate and collaborate with major clinical systems?
Elicio will be fully compatible with major clinicial software systems, commencing with Communicare, Medical Director and Best Practice.
How Elicio will collaborate with clinical systems will depend on the proposed initiative.
At the basic level users could use Elicio to access all APCC Program Quality and Safety Indicators and nKPIs through qiConnect (IF’s quality improvement portal). These indicators exceed those currently available within most clinical systems and qiConnect provides access to quality improvement functions and resources that are not available elsewhere.
Where an organisation, such as an Affiliate or State Government, intends to work with users as part of an initiative such as a QI or population health program, additional functionality can be included based on the requirements of the initiative.
Is the individual patient identifiable within the Elicio database? That is, could an individual be identified outside the practice that provided the data?
Yes, the individual person can be identified but the identity is protected. If the consumer chooses to be identified, for example in an integrated care program, then personal identification is possible and will be subject to an agreement with the consumer relating to how the information could be shared. Otherwise, without informed consent, Elicio would present data in a way that would NOT ALLOW the identity of the individual to be ascertainable.
This may be of particular use with regard to ascertaining the degree of duplication in nKPI data across health services. Elicio would be able to identify the unique person and potentially view data from transient people in a different way. There has been a long running issue with how transient people are treated and many health services adopt the view that, if a person comes from elsewhere, even if that person has been seen three times in the past two years, then their chronic disease care is provided elsewhere. Subject to having access to the relevant databases, Elicio would be able to identify where this is the case or not.
Is the cooperation of the GP Desktop system vendor required for the data extraction (connector) design?
Cooperation is not ‘required’ from the GP system vendors, however, IF has always worked in cooperation with vendors and expects these relationships to continue to strengthen over time. It is not proposed that Elicio will compete with clinical information system vendors, or replicate patient information management or other systems (such as shared care planning systems).
Have the State Health departments signed up to share data? In every state?
No. It is expected that this will be a region by region implementation. IF will meet with State Health departments to provide confidence that the system is safe, secure and can deliver the functionality promised. Should a State choose to implement Elicio on a State-wide basis, this may be administratively easier but it is not necessary.
Good quality data should be a common standard, but in many systems today this is not the case. How is this being addressed?
Common standards are expected to be implemented through the Australian Digital Health Agency. While Elicio can ‘treat’ or ‘clean’ data at the point of extraction, it is expected that common standards and appropriate use of the clinical systems will reduce/remove the need for this over time.
When we say treat or clean data, we refer to the process of validating data to ensure that it is within possible limits and is not obviously errant. Elicio also has the capability to translate data into common language where this is not already in place.
Collated data dashboards – are these confidential for the partnership purpose or can they be disseminated further?
Will the data be aggregated in real time?
While this is technically possible, for practical reasons it is unlikely to be the case. Collection of data will be dependent on the needs of an initiative and form part of the terms and conditions of the initiative. For example, general quality improvement programs may collect data on a monthly basis whereas integrated care programs may need exception data reported overnight.
Can we see a demo?
Not at the moment…but early in the New Year (2017). Telstra Health is currently installing and configuring the system and connectors. Beta testing will commence in 2017 and therefore we expect demonstration will be available in the first quarter of 2017.
Isn’t that what “MyHealth Record” is supposed to do – facilitate the exchange of information between all of a patient’s care providers? Isn’t this a duplication?
No. Elicio is not intended to duplicate the My Health Record or the eHealth system. The focus for Elicio will be on supporting systems level improvement rather than the provision of direct clinical care. Elicio will however leverage the Government’s investment in the eHealth system wherever possible.
An example of where a need is unlikely to be met in the My Health Record could be where a State Health department wants to enrol people through a general practice or Aboriginal health service into a specific quit smoking program and monitor the outcomes of the program over time. This would be achievable in Elicio but not likely in the My Health Record.
Is there an opportunity to leverage patient consent through other solutions/services such as My Health Record?
No. Patient consent needs to be quite specific to an initiative and how the initiative proposes to use and potentially disclose data.
Are there advantages over Pen CAT?
Elicio is not intended to provide the same functions as Pen CAT or the Canning Tool. Medical Director has recently released MD Insights as the first population health tool produced by a GP clinical system vendor. While this is an enormous step forward and will provide the MD clients with truly integrated population health analysis software, site specific data extraction and analysis tools cannot provide the flexibility of a sophisticated data repository such as Elicio. Elicio will provide national level capability; therefore nationally consistent approaches are possible for research, program implementation and the sharing of rich data across jurisdictions which are not possible using contemporary methods.
What’s the incentive for the hospital/pharmacy sharing individual patient data.
The incentive to share will depend on the initiative, which will need to provide a good business case to organisations (and consumers) to allow for the sharing of the data. For example, the benefit for a hospital may be the potential for reduced avoidable hospital admissions, greater connectivity with general practice and pharmacies and improved consumer experiences. For the general practice it could be improved capabilities to manage population health through an improved lens into their systems provided by richer data. For a pharmacy it could be a greater role in health care delivery and payment for such. However, the incentives will depend on a range of factors that underpin any integrated care or other data sharing initiative.