The Way Health Information Is Handled In Australia Looks Like Changing. Badly Needed Indeed.

A kind commenter sent this link to the blog today:

https://acem.org.au/getmedia/dde074e9-5bd3-4a00-b26a-c651cef81a15/earlyengagementpaperv1-0.aspx

Following it you get this:

Interoperability and Connected Healthcare in Australia Early Engagement Paper

27 February 2018 V1.0  - Approved or external use

Document ID: Interoperability Early Engagement Paper Version 1.0

What is not clear is just why it is hosted on the Aust. College of Emergency Medicine Website? This also looks to be the only copy out there.

The whole document is well worth a read (Written by EY) but there are some highlights to me:

First:

What Can We Learn From Other Industries And Countries?

There is much to learn from the experience of other industries and other countries’ health systems.

Examples of successful interoperability in other industries include the financial services sector, the aviation sector, and the smartphone ecosystem. An examination of these industries by Ernst and Young shows common themes:

·         The need for clear regulatory and legislative frameworks. For example, in the financial services sector, clear rules and protocols are set and governed by the Reserve Bank of Australia’s Payments System Board and by the Australian Prudential Regulatory Authority.

·         Reliance on standards bodies. The telecommunications industry has a single global mobile standard: the Global System for Mobile Communications (GSM). In the smartphone environment, the rules for developers to participate in the ecosystem are set by the operating system controllers.

·         Clear leadership. For example, in the aviation industry, all airlines rely on the International Civil Aviation Organization (ICAO), and the European  Organisation for Civil Aviation Electronics.

·         Collaboration and self‐regulation. For example, the Australian Payments Network (AusPayNet) is a membership‐based industry association that acts as a self‐regulatory body.

This points to the need to resolve the issue of ‘who sets and enforces the rules’ for Australian healthcare interoperability, and the balance between government and self‐regulation.

Other countries have taken various approaches to health interoperability. A summary of these countries that are most relevant to Australia’s healthcare system may be found at

http://files‐au.clickdimensions.com/digitalhealthgovau‐a5xdx/files/internationalcomparisons.pdf

There are recurring themes across different health systems that point to issues that need to be resolved in the Australian healthcare context to promote interoperability, and in doing this, connected healthcare:

·         Most countries have a government body with some responsibility for standards and interoperability, although this varies from ‘mandating’ to ‘facilitating’. Some countries complement this with a degree of self‐regulation.

·         There are varying approaches to how data is exchanged, some with centralised data repositories and others with distributed models where patient data is stored in the original collection point and extracted when required.

·         Most countries have a system of unique patient identifiers, with some extending this to both health and social system (with clear benefits of an integrated social approach to healthcare).

·         Most countries draw on international terminology standards, rather than creating their own.

·         Various ‘levers’ have been used to promote adoption, ranging from mandating standards, to stipulations in funding agreements, to providing resource materials (toolkits, implementation guides).

Second:

What makes interoperability?

Enabler	Relevance to interoperability
Identity management	Uniquely identifying health consumers, health and care providers and health organisations in the healthcare ecosystem. ‘I am who I say I am’.
Authentication and authorisation	Ensuring appropriate levels of access to a patient’s health information. ‘As a clinician, I can get access to the information I need to provide care’. ‘As a consumer, I have access to my information and have control over who can access it’.
Integrated electronic health record	Allows health consumers, health and care providers and other participants to access health information, with the consumer at the centre. ‘My health information is available to clinicians involved in my care’.
Unified health directory services	Provide the technology for health consumers and health and care provider to find health services quickly. ‘I can easily find the health and care providers I need to communicate with electronically’
Information exchange	Developing clinical informatics specifications to facilitate information exchange in alignment with relevant data quality and clinical safety requirements. ‘My clinical software communicates with other systems to bring me what I need’.
National standards	Promoting the definition and adoption of consistent standards to facilitate information exchange and provide conformance and compliance mechanisms. ‘Minimum standards are accessible and easy to understand and implement’.
Security	Common standards, understanding and adhering to required policies to protect the privacy and integrity of information. ‘I can rest assured that my information is secure’.

Third:

What shifts to current Australian paradigms do we need to consider?

Comparing international and other industry approaches to interoperability exposes a number of opportunities for Australia. While individual technologies or implementation approaches will need be co‐ designed at a later time, this analysis suggests a number of possible paradigm shifts that may be appropriate in the Australian context. These are described below.

Moving away from an exclusive reliance on a document paradigm

Currently, My Health Record receives information in one of a range of document types that are available for different purposes[13]. There are some advantages to this model: It reflects the traditional practice of healthcare to communicate in documents and does not require a high degree of common terminology. Specialists in Australia, for instance, are familiar with reading referral letters from General Practitioners who have trained and practiced globally, and have differences in terminology.

While documents will continue to play an important role in healthcare communication, some data may be better captured in an atomic form. Atomic data captures information in discrete packets that represent something about a person or service. Frequently, this is numerical data, representing a blood test result, a height, weight, heart rate or blood pressure

Strengthening the use of identifiers for patients, providers and services.

Most Australians have an Individual Healthcare Identifier[14]. However, not all regular care users in Australia have an Individual Healthcare Identifier (IHI). There are also variations in how IHI’s are looked‐up, stored and used in different care provision settings.

It is just as important that we are able to identify providers of care in order to make information on patients available to them. Current provider identification systems, including NASH certificates, are cumbersome and there are ways in which these can be streamlined without compromising security.

Develop new collaborative models for the governance and approval of standards and specifications

The implementation of co‐ordinated improvements will require a multitude of decisions as to “how”. Without agreement on how information will be made available, requested and transmitted, widespread implementation is impossible.

The standards and specifications that define all of this must be developed collaboratively with industry and with a strong focus on suitability for use in the clinical setting.

The process itself for achieving this must be developed in partnership with stakeholders.

Extending the role of My Health Record to include acting as a trust broker to facilitate access to information or resources that are held on other systems.

Currently, My Health Records acts primarily as a repository for information. Clinical information is uploaded into My Health Record by some people and downloaded by others. This limits the type and amount of information that My Health Record is able to facilitate access to. In the age of wearable devices and widespread home monitoring, there may be value in enabling consumers to use My Health Record to link information from disparate sources. Similarly, My Health Record could provide capacity to link a radiology report to the associated images (stored elsewhere) enabler clinicians to have faster access to diagnostic images.

Fourth:

Data rights and responsibilities in Australia

Globally, the issues associated with access and custodianship of information are being redefined in ways that reflect the changing nature of a consumer’s relationship with information about themselves or those that they care for.

The European Union has introduced the General Data Protection Regulation[15], which comes into force on 25 May 2018. These regulations includes provisions for:

Right to Access

Part of the expanded rights of data subjects outlined by the GDPR is the right for data subjects to obtain from the data controller confirmation as to whether or not personal data concerning them is being processed, where and for what purpose. Further, the controller shall provide a copy of the personal data, free of charge, in an electronic format. This change is a dramatic shift to data transparency and empowerment of data subjects.

and Data Portability

GDPR introduces data portability ‐ the right for a data subject to receive the personal data concerning them, which they have previously provided in a 'commonly use and machine readable format' and have the right to transmit that data to another controller.

A similar approach is envisaged in the United States with the US Office of the National Coordinator for Health Information Technology defining interoperability as[16]:

the ability of a system to exchange electronic health information with and use electronic health information from other systems without special effort on the part of the user.

This reference to ‘without special effort’ draws upon the growing body of agreed, open‐source, Application Programming Interfaces that allow consumer facing applications (like Apple’s new Health Application) to draw information from a range of clinical systems using a standardised approach with the consumer’s consent. Essentially, Government and Industry have collaborated to define a set of interfaces, increasing over time, by which systems share information that becomes the de facto standard of what is reasonable as opposed to being ‘special effort’.

In Australia, the Privacy Act 1988 governs how personal health information is managed by government and the private health sector, with additional legislative requirements applying in states and territories for state based health providers. The Privacy Act and the Australian Privacy Principles it contains, give the consumer the right to access to their own health information, with entities who hold that information obliged to provide it in the manner requested by the individual unless one of a number of lawful exceptions applies. The principles provide that an entity may charge the consumer the reasonable costs of providing this information in the manner requested.

The Australian Government Productivity Commission examined the issues associated with data availability and use, reporting in 2017[17]. This report made a number of observations regarding the potential to improve outcomes and the effectiveness of the health system more generally. Importantly, the report makes the following recommendation:

Marginal changes to existing structures and legislation will not suffice. Recommended reforms are aimed at moving from a system based on risk aversion and avoidance, to one based on transparency and confidence in data processes, treating data as an asset and not a threat. Significant change is needed for Australia’s open government agenda and the rights of consumers to data to catch up with achievements in competing economies.

·         At the centre of recommended reforms is a new Data Sharing and Release Act, and a National Data Custodian to guide and monitor new access and use arrangements, including proactively managing risks and broader ethical considerations around data use.

·         A new Comprehensive Right for consumers would give individuals and small/medium businesses opportunities for active use of their own data and represent fundamental reform to Australia’s competition policy in a digital world. This right would create for consumers:

o   powers comparable to those in the Privacy Act to view, request edits or corrections, and be advised of the trade to third parties of consumer information held on them

o   a new right to have a machine‐readable copy of their consumer data provided either to them or directly to a nominated third party, such as a new service provider

These proposed reforms, and the emergence of consumer‐facing applications nationally and internationally, demonstrate a growing expectation in the community that a consumer’s data both can and will be made usefully available.

----- End Extracts:

There is lots of news here:

1. The myHR is obsolete and hardly relevant. Large document storehouses are a health hazard!

2. Standards matter! And you actually need to understand what they mean and require.

3. There are big changes coming to data control and ownership including health and a GPDR like mechanism(s) is coming over time.

4. The myHR is going to be radically changed as to how and what it can hold and what control patients have. And it has to be able to properly delete old, unwanted material.

5. Primary systems are what clinicians are using – what a surprise!

Have a hunt for other nuggets. It looks to me – on this basis of this – that the ADHA is being dragged in at least way towards some more sensible directions!

Comments please and sorry the formatting is a bit poor!

David.

Added about 5pm. The document totally misses out on pointing out just how complex and difficult real interoperability is I believe. The learning curve has not really begun I reckon!

D.