This is an extract from Section 10 of the Productivity Commission into Disability and Care Support.
The report - dated August 2011 - is found here:
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Easing the burden of providing and sharing necessary information
While assessment will reduce the need for multiple applications to determine eligibility, service providers still need to be provided with details about their clients in order to meet their needs effectively. Similarly, people will still be required to communicate their needs, what they have received and the outcome it has had on them, as well as reveal any changes in their circumstances to multiple different parties. In addition, there will still be instances when paperwork will be required to match people with appropriate goods or services, for example when replacing a major appliance or seeking supported accommodation.
One way to reduce the costs associated with these activities is through allowing for the electronic submission of all forms and applications (although traditional avenues should also still be available). This is already a feature of some schemes and is a low cost way of reducing the impost associated with paperwork, as well as potentially increasing the speed that paperwork is processed.
However, decreasing the current level of administrative duplication requires a greater capacity to share information between different parties, rather than having to provide it to each individually. The idea that the NDIA should create a shared electronic record that service providers (and potentially other government departments) could access — instead of people having to continually fill out forms containing similar information — was widely supported both prior to, and in response to the draft report (for example, sub. 267, p. 4; sub. 181, p. 1; and sub. 9, p. 2; sub. DR968, p. 2; sub. DR932, p. 16; sub. DR800, p. 21). This would substantially reduce the paperwork involved in securing services offered under the NDIS (such as attendant care, respite, transportation etc.). Over time, there is also the potential scope to develop linkages with other government agencies (such as Centrelink) whereby required information relating to someone’s disability could also be accessed (with the individual’s permission).
In addition to the substantial benefits associated with reducing the administrative burden placed on people with a disability and their families, a shared electronic record and central database would also have a number of other broad long-term benefits, including:
- greater continuity of care. For example, when there are staff changes (such as a new attendant carer) or movement from one service provider to another, an electronic record (with appropriate privacy safeguards) is an effective way of communicating essential information about support needs
- portability of entitlements. Barriers to geographical mobility for people with a disability would be greatly reduced if there was an electronic record of each client’s assessed need and financial entitlement applicable throughout Australia
- improved communication and collaboration between allied health professionals and service providers, and better coordination of care
- ease of billing. With appropriate IT infrastructure linking service providers to the NDIA, the electronic record could also house information about purchases made by people with a disability and expedite payment to service providers (for example something like HICAPS). It would also be useful to ensure that the services provided by specialist disability agencies and the prices they charged, were appropriate
- aggregate scheme monitoring and facilitating greater understanding of the costs of meeting the needs of people with disability. The ability to interrogate a central database (but still in a way that strictly protects privacy) could provide rich comparative analysis about the costs of different types of disability and the payoff to certain types of interventions (such as early childhood, or home modification rather than attendant care) in terms of future liabilities. It would also greatly improve the ability to anticipate and plan for changes in the overall cost of maintaining a NDIS (chapter 12)
- the ability to evaluate the effectiveness of therapies, treatments and aids and appliances based on systematic statistical data.
Expenditure by people managing their own entitlement under self-directed funding would not be recorded in detail on the record at the point of sale (because that would defeat the purpose of self-directed funding and be practically unfeasible). However, their expenditure would still be monitored through acquittal requirements (Such requirements would probably be more comprehensive as people first took up self-directed funding and would decline as they demonstrated proficiency in managing their funds).
The benefits of a shared electronic record, and the system required to deliver them, bear a close resemblance to the Personally Controlled Electronic Health Record (PCEHR) in the Australian Government’s E-health strategy. The Australian Government committed $466 million to developing PCEHRs in 2010-11, has released a Draft Concept of Operations describing how PCEHRs will work (NEHTA 2011) and begun trials across Australia. As many of the challenges involved in this task are relevant (to varying extents) to establishing an electronic disability record (see box 10.6), the experience garnered will be invaluable to the NDIS.
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Box 10.6 Challenges involved in implementing PCEHRs
Many of the challenges involved in implementing PCEHRs will also affect (to varying extents) attempts to establish a electronic disability record. These include:
- the difficulty involved in finding solutions to some problems. Foremost amongst these are privacy and security issues, how to standardise the data that is input into the system and how to uniquely identify providers and people within the system
- the difficulty involved in coming to an agreement. There has been substantial growth in the use of IT and E-health technologies across Australia. However the technologies employed have not been coordinated between state health departments or within states (between GPs, specialists and hospitals), resulting in discrete, incompatible information systems. Transitioning from this situation to a unified system requires an agreement as to what the platform should look like — either picking a winner from existing platforms or designing a new one. As the transition from existing systems will be difficult, costly and potentially risky to patients, reaching such an agreement is not straightforward
- high set-up costs. In addition to the direct costs, such as hardware, software and training, there are also costs in finding solutions to problems and reaching an agreement about how to transition to a coordinated system. These costs involve consultation, research and pilots.
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This raises the question as to what level of linkage or interaction there should be between the two records. Clearly, it is essential that the electronic disability record should be designed such that it can easily incorporate information from the PCEHR relevant to care and support (and where consent has also been given by the person with a disability). However, there are a number of differences that suggest it is appropriate for the NDIA to independently develop and house an electronic record.
There are important functional differences.
- In particular, the electronic record will assist core functions of the NDIA, such as: facilitating the financial sustainability of the scheme; building evidence about the effectiveness and cost effectiveness of different services and interventions (chapter 13); helping local area coordinators to monitor the welfare of their clients; and ensuring that appropriate and high quality services are being delivered (section 10.3).
- The database would be much smaller and more manageable, as its population would include only those eligible for tier three of the NDIS (as opposed to all Australians) and the disability industry is much smaller than the health sector. Also, the types of information recorded in the electronic disability record would tend to be simpler than the type of technical data required for clinical diagnosis and treatment. This would include things like: simple personal details; assessed need; services required, received and the prices paid; client outcomes and other additional notes.
- As technological legacy issues are likely to be less of a barrier, there is useful opportunity to develop a universal framework for the electronic record that is appropriate for the disability sector and can evolve according to changing needs. One option would be to develop a simple and secure web service accessible from any computer or mobile device (similar to current internet banking practices). The NDIS will be accompanied by an expansion of service provision, which allows new entrants to be given receive consistent advice about technological requirements and processes associated with the record. This is complemented by the relatively low use of E-health type technology in the disability sector, reducing the extent of disruptions caused by changes to IT systems or existing practises.
As with, PCEHR, the electronic disability record will require careful and clearly articulated privacy protocols, which should be developed in consultation with the Australian Privacy Commissioner. One important facet of this would be differing levels of access. For example, service providers would only have access to a specified range of information, with active consent from the client. Similarly, accesses to the record by different services providers could potentially be ‘layered’ according to needs or preference of the client. In some cases, a person might not want a provider to have access to the record at all, and in that case, the person would have to provide the required information to service providers in the traditional way. Similarly, protocols will also need to be established for entering data onto the record (privacy issues are discussed further in chapter 12).
Recommendation 10.2 |
The Australian Government should, with privacy safeguards, fund and develop a national system for a shared electronic record of the relevant details of NDIA participants, including assessed need, service entitlements, use and cost of specialist disability services, outcomes and other key data items.
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From Section 12 we also see this paragraph or two:
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Links with the eHealth initiatives
The evidence base of the scheme should ideally mesh with eHealth initiatives (for example, the use of common personal identifiers) and interface effectively with the broader health sector. The latter would allow, for example, better information on those people who enter the disability system, but later withdraw. They may subsequently re-enter the mainstream health sector but, under current arrangements, their medical experiences and history can become ‘lost’ in a bureaucratic sense. This issue is examined in greater detail in chapter 10.
The NDIA should make relevant data, research and analysis publicly available, subject to confidentiality, privacy and ethical safeguards.
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So what we have in this report is suggesting scope expansion of the Health Identifier Service to the Disability Sector and the creation of a whole new Government run system to manage and research those receiving disability services.
I really hope those planning for implementation of these ideas watch very closely how the NEHRS / PCEHR progresses and carefully learn all the lessons possible from what is going on in the Health Sector.
One has a really bad sense of déjà vu with all this!
David.
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