Queensland disability groups build a social eHealth record

Eight Queensland-based disability service providers have formed a partnership to roll out a shared electronic health and personal record to streamline care management for their clients and to keep all of their information in one place.

The organisations have formed a limited company called G8EHR to set up the system, which is based on Extensia's RecordPoint shared electronic health record. It is being adapted to allow existing social and personal records to be scanned in, along with assessment tools such as an electronic version of the University of Queensland's Comprehensive Health Assessment Program (CHAP).

The eight organisations – the Endeavour Foundation, Multicap, Cerebral Palsy League, Life Without Barriers, Centacare, Uniting Care Community, FSG Australia and Spinal Injuries Australia – have also contracted the Improvement Foundation to assist with change management and to improve uptake of the system, which they are calling the My eRecord.

Multicap CEO Jo Jessop said the impetus behind the development of the system was the common refrain from people with disabilities and their families that they get tired of telling their story over and over again to a new healthcare or service provider.

“We all have shared clients, we all support people who also access services from other organisations and we were talking about how we could make it easier for our clients and for ourselves in capturing and not losing that information,” Ms Jessop said. “We thought there must be some way that we can share information in a way that is secure.”

Initial discussions were held at the same time as the National Disability Insurance Scheme (NDIS) policy was being developed, so it tied in with the move to enable people to be more in control of their own information. While RecordPoint is a shared health record, it is being used in this project for much more.

“We are using it as a social record and that's why it's called My eRecord,” Ms Jessop said. “It is designed to allow a person with a disability and their family to save in a central place their stories, information that is relevant about themselves, as well as their health information.

“For many of our clients that have multiple disabilities, who cannot speak, who have challenging and complex behaviours, it is a place to keep that information so it doesn't get lost. Multicap has clients who've been with us from the start, and we've been in existence for 52 years. Their families forget and we forget. We forget if they got that immunisation and when, who was that doctor who they went to see 10 years ago, what did he say about that behaviour or their swallowing. It's designed to keep all of that information so that it lasts beyond us.”

While the individual and their family or decision-maker are in control of the eRecord, they are able to select a care team to whom they grant access. This can include their GP, specialists and allied health professionals as well as their different service providers.

RecordPoint has been built on openEHR principles so is highly adaptable and configurable, and is easily integrated with other clinical systems. For example, Extensia has developed a plug-in adapter called RecordConnect that allows users of medical systems such as Medical Director, Stat, Best Practice, Communicare and practiX to integrate with RecordPoint.

Ms Jessop said this would allow GPs to upload information to the My eRecord automatically, and let allied health professionals to log in and add notes.

“If the GP software is linked up to RecordPoint, a flag comes up to show that the person has got a shared record. They can then log in and have a look and they can update anything that they might need to through that system.

“It can also hold scanned PDFs and files and put them in as well, and that's where we're starting. Extensia are hosting it for us, and they have all of the security and the new Privacy Act covered, which is one of the benefits.”

The Comprehensive Health Assessment Program (CHAP), which was designed by the director of the Queensland Centre for Intellectual and Developmental Disability, Nick Lennox, and is in use throughout Queensland, can also be used with My eRecord.

CHAP provides comprehensive medical histories for patients with intellectual disabilities and has been shown to improve health outcomes. The paper CHAP form has been adapted into a set of electronic forms that doctors will be able to complete through the My eRecord and can be stored on it.

RecordPoint will also able to connect to the PCEHR, so some of the health information will be able to be uploaded should the client and their healthcare provider agree to it. Ms Jessop said My eRecord wasn't designed to replace the PCEHR but to complement it, as people living with a disability have much more information that needs to be retained centrally.

“We are building up a database of social information around a person with a disability, of which some is health information, which will be able to link with the PCEHR,” she said.

Each organisation is going about introducing their clients and their various health and service providers to My eRecord in different ways. Multicap, for example, has written to its clients' families and has received a very good response so far.

“For most of our clients here at Multicap, if they visit a GP they will go with one of our staff members or their family or decision-maker, so that's the communication channel with healthcare providers.

“The Cerebral Palsy League have a select group of families that they are using as their leaders, and then those people will talk to colleagues and friends and so on. Every organisation is approaching it differently.”

The organisations are also working with the Improvement Foundation (IF), which has extensive experience in improving primary healthcare systems and helping organisations prepare for the PCEHR.

IF CEO Colin Frick said his organisation's role was predominantly to work with the member organisations to increase the uptake with clients. “The background of our organisation is in quality improvement methods, and we worked with RecordPoint in a separate project, so we already had the knowledge,” Mr Frick said. “It was a pretty easy fit in that regard, but our main role is to increase take-up.

“One of the issues is to understand what the difference will be between what the PCEHR can do and what their eRecord can do.”

IF will also run a help desk from its base in Adelaide to assist the organisations to get up and running, but the main role is to work through project teams to provide education for the clients and their families.

Posted in Australian eHealth

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