Territory Kidney Care: a clinical decision support system to facilitate integrated care for people with CKD in the NT

 

Background: 

Territory Kidney Care (TKC) is an integrated clinical decision support system that links primary health data from government and non-government services with hospital data for people with chronic disease that put them at risk of developing kidney disease. TKC has been developed in partnership with the Northern Territory Health and the Aboriginal Community Controlled Health Services (ACCHS) sector. TKC undertook an iterative and incremental design process in collaboration with stakeholder health services and clinicians to ensure the system was built 'fit for purpose'.

In the NT, where the population is highly mobile and often access multiple primary and hospital-based services, there are significant challenges to the provision of optimal integrated care. Due to unconnected and siloed healthcare systems, patients frequently have multiple electronic and paper health records across government and non-government services. This increases the complexity and disjointed nature of care, making it difficult for treating clinicians to obtain a complete and accurate picture of a patient's health journey.

Aim:
The aim of TKC is to improve the early identification and management of chronic conditions, including renal, cardiac and endocrine conditions, thus improving health outcomes and preventing or delaying the requirement for tertiary care and complex interventions. TKC does this by integrating primary and tertiary clinical data to create one patient one record. TKC provides time and resource efficiencies through the automated collation, synthesis and summation of longitudinal information. TKC can improve the safety, quality and cost-effectiveness of clinical care by flagging high clinical risk patients, pre-empting adverse events, avoiding duplication of tests or treatments, and facilitating coordination and continuity of care. The system can also be used to improve the understanding of resource demand by analysing health needs, attendance patterns and outcomes. This can help identify gaps and opportunities for improving the quality and accessibility of primary health care, as well as inform policy making and resource allocation.
 
Summary:

The NT has the highest rates of chronic conditions in Australia and many people live with two or more chronic conditions. People with chronic conditions are more likely to visit health services and have unplanned hospitalisations. This has a financial impact on patients and s governments. Some of the conditions which can cause kidney disease include diabetes, hypertension, obesity, smoking, heart disease and long-term use of some medication. Unfortunately, most people don’t know if they have kidney disease until it is too late. Chronic Kidney Disease (CKD) is a common and serious health problem in Australia. CKD refers to all kidney conditions where a person has kidney damage and/or reduced kidney function. People with CKD suffer poor health outcomes, reduced life expectancy and reduced quality of life. First Nations Australians experience high levels of kidney disease. Critically many people do not know they have CKD, as up to 90% of kidney function can be lost before symptoms are evident. 

Kidney disease has a huge impact on people’s health and wellbeing, relationships, as well their finances.  Demand for dialysis treatment and the associated expenditure has increased relentlessly over recent decades in the NT and has surpassed all projections. Sustainable measures to address the high rates of chronic kidney disease and provide earlier intervention to delay or avoid the need for dialysis are urgently needed. The lack of data sharing between primary and tertiary services and government and non-government clinics presents a clinical safety risk for patients who attend multiple health services. The lack of integrated clinical information systems limits the coordination of care and the potential success of intervention measures.

TKC is an integrated clinical information system that provides a means to facilitate earlier and targeted patient care without increasing the resource burden on staff. 

TKC, adds an immense contribution to virtual healthcare, telehealth and integrated care and will be core to our ability to sustain effective care for people with complex chronic conditions as we adopt virtual models of care. TKC has the potential to transform care delivery and provide consumer-centric, affordable, accessible and high-quality health care.

Our research has found:

Our work with tertiary and primary health services has found that a substantial proportion of people living with or at risk of chronic conditions are not regularly screened and that a number of people with advanced CKD do not have a corresponding diagnosis recorded in their electronic health record and are therefore not receiving evidence-based care.

However, there is strong evidence which suggests that patients who have intense monitoring, follow-up and treatment according to evidence-based protocols have better health outcomes, reduced health service utilisation and make timely and more informed choices about treatment options. Additionally, there is extensive evidence on strategies to facilitate the earlier identification of people with chronic conditions, including the monitoring, surveillance and the regular screening of people with hypertension, cardiovascular disease and diabetes. Importantly, the provision of care to people by people who know the patient and their families the best - the community health service - is key to increasing and maintaining patient engagement, and this requires support for GPs in the management of people with complex conditions.

In 2020 TKC won the NT Digital Excellence Award, Community Benefit Category.

The Commonwealth Government’s National Digital Health Strategy 2023-2028 (under the Australian Digital Health Agency) has four outcomes including being digitally enabled, person-centric, inclusive and data driven. TKC was highlighted in the strategy as it aligns with all four outcomes but was mentioned specifically in its capacity to connect seamlessly with existing information systems to support evidence-based clinical decision making and deliver high quality integrated health information. 

The Northern Territory Government’s Digital Territory Action Plan 2023-2024 highlighted TKC as “an innovative clinical information system” enhancing customer experience and harnessing innovative technology and services. 

Chief Investigator:

Associate Professor Gillian Gorham

Project contact:

Paul Kamler - TKC - Informatics Clinical Nurse Consultant

Associate Professor Asanga Abeyaratne - TKC -Clinical Lead Father Frank Flynn Fellow

Project start date: 

2016 - ongoing

Access

The TKC system is hosted by NT Health and security and privacy are governed by NTG sits within NT Health is only available to clinical staff in NTG and partnering health services who are providing clinical care. Approved users must have an NTG LAN ID to be able to access the system via the access NTG (external portal) or at https://territorykidneycare.nt.gov.au within the NTG network.

To request access to TKC, please contact Paul Kamler Health Informatic CNC and TKC Administrator paul.kamler@nt.gov.au.

Non-government clinicians are required to complete TKC New User form. 

Participation

Participation in TKC for non-government health services is voluntary. Participation is formalised through execution of the TKC Data Participation Agreement, which outlines the working relationship between the partners and the data security, data management, access and privacy protocols. The following links are provided for your information. The Data Participation Agreement acknowledges the common goal of partners to improve the health and wellbeing of people in the Northern Territory. TKC partners actively support each other in the delivery of culturally secure care. An agreed approach to safeguard the rights, views and values of health service clients underpins TKC.

By participating, each organisation demonstrates its commitment to preventive, early intervention and evidence-based practice in the treatment, management and planning of chronic disease care. 

TKC includes data from 6 NT public hospitals, 56 government primary health services, 11 ACCHS and one private practice in the NT. TKC has been implemented in the majority of Aboriginal Community Controlled Health Services in the NT. The TKC project team continue to work with primary health services including private GP practices, regarding the benefits of linking patient data for improved patient care.  

For more information on how your health service can participate in TKC, or to arrange a presentation / information session for key stakeholders at your health service please contact Paul Kamler.

  1. Digital Technology

    Digital Technology

    Date

    Territory Kidney Care was highlighted in the 2023-2024 Digital Territory Action Plan by the office of the Minister for Corporate and Digital Development of the Northern Territory Government, as “an innovative clinical information system to assist with early identification and management of kidney disease” enhancing customer experience and harnessing innovative technology and services.

  2. National Digital Health Strategy

    National Digital Health Strategy

    Date

    Territory Kidney Care was also highlighted in the National Digital Health Strategy 2023-2028 by the Australian Digital Health Agency of the Commonwealth Government. The strategy has four outcomes including being digitally enabled, person-centric, inclusive and data driven. TKC is aligned to all four outcomes, but was mentioned specifically in its capacity to deliver high quality integrated information about an individual’s health that can connect seamlessly with existing information systems to support evidence-based clinical decision making.

  3. Territory Kidney Care: integrated chronic disease support in the NT

    Territory Kidney Care: integrated chronic disease support in the NT

    Date

    TKC represents a collaboration between Menzies School of Health Research, NT Health and the Aboriginal Medical Services Alliance Northern Territory (AMSANT).

  4. $12.9 Million for New Research to Improve Primary Health Care

    $12.9 Million for New Research to Improve Primary Health Care

    Date

    Funded through the 2020 Primary Healthcare Research Data Infrastructure grants, a number of research institutions will receive funding to undertake projects that use new and existing data sets to improve access, quality, safety and efficiency of our primary health care system.

  5. Research can be ‘vital part’ of GPs’ caring role

    Research can be ‘vital part’ of GPs’ caring role

    Date

    Part of a team at Menzies School of Health Research in Darwin, Dr Chen is developing a clinical decision-support tool for chronic diseases, Territory Kidney Care.

  6. Territory Q | NT Digital Excellence Awards

    Territory Q | NT Digital Excellence Awards

    Date

    Community Benefit Award in partnership with DXC Technology - Menzies Territory Kidney Care

  7. Five medical research projects recognised in the Northern Territory

    Five medical research projects recognised in the Northern Territory

    Date

    Five researchers based at Menzies have received recognition in the form of Investigator Grants from the NHMRC and the MRFF.

  8. $440 million funding boost for vital health and medical research for all stages of life

    $440 million funding boost for vital health and medical research for all stages of life

    Date

    $6 million in research funding for three Indigenous health grants in the Northern Territory. This includes $2.5 million for an NHMRC Centre of Research Excellence at the Menzies School of Health Research to prevent and manage bronchiectasis, a lung disease which results in recurrent chest infections and is particularly common in Aboriginal and Torres Strait Islander people.

  9. Senator reveals personal story of kidney disease

    Senator reveals personal story of kidney disease

    Date

    Nephrologist at the Menzies School of Health Research, Paul Lawton, said his research team had been investigating key causes that dramatically impact upon remote Aboriginal communities.

  10. Sunday Territorian | Gift of life

    Sunday Territorian | Gift of life

    Date

    Senator Malarndirri McCarthy discusses her kidney diseaese and treatment by Dr Paul Lawton

  11. The Health Advocate Episode 11 - Renal Patients in Remote Communities

    The Health Advocate Episode 11 - Renal Patients in Remote Communities

    Date

    AHHA's Director of the Deeble Institute for Health Policy Research, Rebecca Haddock, sits down with Stephanie Pushka.

  12. SMH | Hope and healing

    SMH | Hope and healing

    Date

    A new approach to treatment is helping Indigenous Australians fight kidney disease

  13. COAG Health Council | Communiqué 8 March 2019

    COAG Health Council | Communiqué 8 March 2019

    Date

    The Federal, state and territory Health Ministers met in Adelaide at the COAG Health Council to discuss a range of national health issues.

  14. Win for dialysis patients in Northern Territory

    Win for dialysis patients in Northern Territory

    Date

    THE Territory’s kidney disease sufferers will be the major beneficiaries of a new Medicare item to be announced by the Turnbull Government today.

  1. Gorham, G., Abeyaratne, A., Heard, S., Moore, L., George, P., Kamler, P., Majoni, S. W., Chen, W., Balasubramanya, B., Talukder, M. R., Pascoe, S., Whitehead, A., Sajiv, C., Maple-Brown, L., Kangaharan, N., & Cass, A. (2024). Developing an integrated clinical decision support system for the early identification and management of kidney disease—building cross-sectoral partnerships. BMC Medical Informatics and Decision Making, 24(1), 69. https://doi.org/10.1186/s12911-024-02471-w

  2. Chen, W., Abeyaratne, A., Gorham, G., George, P., Karepalli, V., Tran, D., Brock, C., & Cass, A. (2022). Development and validation of algorithms to identify patients with chronic kidney disease and related chronic diseases across the Northern Territory, Australia. BMC Nephrol, 23(1), 320. https://doi.org/10.1186/s12882-022-02947-9

  3. Chen, W., O'Bryan, C. M., Gorham, G., Howard, K., Balasubramanya, B., Coffey, P., Abeyaratne, A., & Cass, A. (2022). Barriers and enablers to implementing and using clinical decision support systems for chronic diseases: a qualitative systematic review and meta-aggregation. Implementation Science Communications, 3(1), 81. https://doi.org/10.1186/s43058-022-00326-x

  4. Chen, W., Howard, K., Gorham, G., O'Bryan, C. M., Coffey, P., Balasubramanya, B., Abeyaratne, A., & Cass, A. (2022). Design, effectiveness, and economic outcomes of contemporary chronic disease clinical decision support systems: a systematic review and meta-analysis. Journal of the American Medical Informatics Association, 29(10), 1757-1772. https://doi.org/10.1093/jamia/ocac110

  5. Chen, W., Howard, K., Gorham, G., Abeyaratne, A., Zhao, Y., Adegboye, O., Kangaharan, N., Talukder, M. R., Taylor, S., Cass, A., & Territory Kidney Care Steering Committee. (2024). Costs and healthcare use of patients with chronic kidney disease in the Northern Territory, Australia. BMC Health Services Research, 24(1),791.https://doi.org/10.1186/s12913-024-11258-8