Feature: Cradle Coast site emphasises end of life care

This article first appeared in the 20 February 2012 edition of Pulse+IT Magazine.

The Cradle Coast Connected Care (4C) project is building a PCEHR-conformant repository to house shared health summaries and advance care plans for aged care residents, which will inform national policy for future PCEHR-based end-of-life care components.

The Cradle Coast area of Tasmania has been working on an electronic health information exchange (eHIE) project since the end of 2009. Set up by a consortium of local groups – including General Practice North-West (now known as Tasmania Medicare Local North West Branch), the University of Tasmania Rural Clinical School, the North West Area Health Service and the Cradle Coast Authority, an umbrella group of nine local councils in the region – the aim of the eHIE is to develop a virtual network for the secure, electronic sharing of patient health information between healthcare providers in the region.

The electronic sharing of information is important in this area of Australia, covering as it does one-third of the island of Tasmania and reaching into remote as well as rural areas. According to project manager Colleen Cheek, the project had in its initial stages a very broad brief, but the main requirements from local general practitioners were the ability to send referrals more easily to the Area Health Service and an improvement in the sharing of information.

“They were really keen to use, not a bespoke version, but something that would be sustainable and would transition to some sort of national system,” Ms Cheek says. “When people have to travel to receive health services, they want to go where their family support is, which might be in a different state. People move about in Australia, and that was at the forefront of the practitioners' minds. They also wanted it to have a place in accreditation and for the project to improve the quality of information, not just be able to send from one place to another.”

Work had begun on sending electronic referrals to the specialist health services, but with the advent of the PCEHR, including the National eHealth Transition Authority's (NEHTA) eReferrals plans, the Cradle Coast eHIE has changed its focus from the sending of eReferrals to the receiving end.

The Cradle Coast eHIE is currently working with vendor Alcidion on an eGateway project so that when eReferrals are available in GP software, the eGateway will be set up to receive those referrals at the area health service level. To do that, the eHIE is using Medicare's Healthcare Identifiers Service for Health Provider Identifier – Individual (HPI-I) and Health Provider Identifier – Organisation (HPI-O) numbers.

“We have worked with the Area Health Service in identifying the referral end points and assigning an HPI-O structure to those points,” Ms Cheek says. “(Alcidion) has developed the gateway, and they have an inbound referral management system that flags that the referral has been received and then routed to the particular end point for the management of that referral, through the HPI-Is.”

The eHIE is currently waiting for the release of the eReferral system within GP software, and will then complete its conformance and compliance requirements. Following that, the group will pilot-test the system and then roll it out to general practices and the North West Area Health Service.

Advance care planning

With that under way, the eHIE has now embarked on the Cradle Coast Connected Care or 4C program under the Wave 2 round. The 4C program aims to build a local shared electronic health record specifically to be able to share advanced care planning for residents of aged care facilities. The role of this project is to test cross-boundary access of authorised users to the consumer's care planning and health record, with an emphasis on advance care plans for end-of-life care.

Alcidion is developing an electronic repository for this project which is planned to be integrated directly with the hospital-based electronic medical record (eMR) which will be developed by Tasmania's Department of Health and Human Services over time.

“We are building it on state-wide infrastructure so if it is proven locally, it could be adopted state-wide,” Ms Cheek says. “What has worked well for us is that the VP of research at Alcidion, Professor Malcolm Pradhan, is a NEHTA clinical lead, so we have been able to get cracking on a lot of the development with the vendor already having knowledge of how it is all supposed to work.”

As well as having the capacity to receive shared health summaries and event summaries, the system will include the components of traditional advance care plans, such as nominating a person responsible, listing if an Enduring Guardian is available or registered and also recording things that are important to people and their dignity, their preferences for care and for decision making.

These are hugely important documents for aged people, outlining their wishes in terms of health care. Many do not wish to end their days in a hospital bed or to be resuscitated, but without clear plans which are aligned with their wishes, medical and nursing staff often find it difficult to determine exactly what a person might have wanted at the time the care is required.

The clinical care plans developed with the person, and their nominated person responsible, outlines their wishes and the steps that have been agreed with their primary health team, available to all providers involved in their care.

“It will also list goals of care in relation to their function, their expected length of life, their comfort requirements and planning ahead for expected deterioration,” Ms Cheek says.

“The idea is that when a person goes into care or is a resident of an aged care facility, they complete this in conjunction with their primary healthcare team, listing what is important to them and what their goals of care are.”

Shared health records will hopefully improve coordination and communication of end-of-life care, as it allows aged care facilities to contact after-hours GP services and have that service know exactly the wishes of the patient.

“If the care they need exceeds the capacity of the aged care facility and they need to be transported to hospital, then the idea is that this would be integrated with the eMR so when they arrive at the ED it will be flagged that there is one of these plans available and the ED staff will then be able to view those plans,” Ms Cheek says.

The repository will accept shared health summaries from GPs and event summaries from hospitals. It will be accessible only to those holding HPI-Is and the patient or resident will be identified by their IHI. Ms Cheek says the repository will be accessible through a web interface so GPs and aged care staff can log on from anywhere. Allied health professionals such as pharmacists are also a large aspect of the project.

Five residential aged care facilities have so far signed up and will be working with the project team to ensure it is implemented by the end of June. Patients, however, will not be enrolled until late in the project to ensure their dignity is preserved.

“We can't sign anybody up until we have our privacy review and consent model completed. I haven't been in a rush to do that, as we do not want to consent anyone until the system is near to being available. We hope to have our consent model approved and be ready to recruit people around April or May.”

If the project is successful, the aim is to roll it out throughout Tasmania and use it to inform national policy for future PCEHR-based end-of-life care components.

Posted in Australian eHealth

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