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 health care 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 kidney disease, thus improving health outcomes and preventing or delaying the requirement for end stage kidney treatment. TKC does this by integrating primary and tertiary clinical data aiming for 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.

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

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. The burden of CKD is particularly heavy amongst Indigenous Australians and in the NT the rates of kidney disease are the highest in Australia. More than 2 in 5 Aboriginal adults in remote NT communities show evidence of having CKD. Many people do not know they have CKD as up to 90% of kidney function can be lost before symptoms are evident. Additionally, chronic conditions such as diabetes, hypertension and heart disease, although occurring more frequently in Aboriginal people, may not be fully recognised as risk factors for CKD. CKD is an under-diagnosed condition.

Demand for dialysis treatment and the associated expenditure has increased relentlessly over recent decades in the NT and has surpassed all projections. 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.

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

Implications for policy and practice:

In the NT, where the Aboriginal population is highly mobile and often access multiple community and hospital-based services, there are significant challenges to the provision of optimal integrated care. Patients with a high risk of developing chronic kidney disease (CKD) are slipping through “the cracks” in our health system.

The effective integration of disparate health care systems is crucial in the “new normal” post-COVID19 era. The NT experienced very different challenges in the delivery of health care during the pandemic, compared to other jurisdictions. Remote communities were declared biosecurity zones and travel by clinical staff and patients to and from the communities was severely restricted. Virtual health care became a necessity. However effective virtual health care relies on access to complete patient information and clinicians are often required to work with diverse interfaces to obtain the data they need; often this information is incomplete.

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 transition to post-COVID 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 at risk of CKD are not regularly screened and that a number of people with advanced CKD do not have a correct diagnosis 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 CKD which include monitoring, surveillance and the regular screening of people with hypertension, cardiovascular disease and diabetes. Importantly, the provision of care to people by people that know them and their family the best - the community health service- is key to increasing and maintaining patient engagement and this requires support for GP in the management of people with complex conditions.

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

Access

The Territory Kidney Care (TKC) database is only available to clinical staff who are providing care to Renal patients and you must have a NTG LAN ID to be able to access the system at https://territorykidneycare/. 

To gain access to the Territory Kidney Care System, please contact Paul Kamler.

Participation

Participation in TKC for non-government health services is voluntary. Participation is formalised through execution of the TKC 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. 

A staged roll-out of TKC across the Territory is planned for 2020 to ensure the level of data integrity required for the type of clinical decision support TKC provides is maintained, and to allow the TKC Project Team to support newly participant Health Services to enact their implementation plans. To assist Health Services to identify and work through activities to support successful implementation on TKC an Implementation Plan Template has been developed.

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.

Lastest update: 

Online updates:

Pdf updates:

Funders:
  • Philanthropic
Collaborators:
  • AMSANT 
  • Ampilatwatja Health Centre
  • Anyinginyi Health Aboriginal Corporation
  • Central Australian Aboriginal Congress
  • Katherine West Health Board
  • Laynhapuy Homelands Aboriginal Corporation
  • Malal'a Health Service Aboriginal Corporation 
  • Miwatj Health Aboriginal Corporation
  • Pintupi Homelands Health Service 
  • Purple House
  • Red Lily 
  • Sunrise Health Service 
  • Wurli-Wurlinjang Aboriginal Health Service
  • NT Health
  1. 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).

  2. $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.

  3. 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.

  4. 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

  5. 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.

  6. $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.

  7. 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.

  8. Sunday Territorian | Gift of life

    Sunday Territorian | Gift of life

    Date

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

  9. Project newsletter | June 2019

    Project newsletter | June 2019

    Date

  10. 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.

  11. SMH | Hope and healing

    SMH | Hope and healing

    Date

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

  12. 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.

  13. Project Newsletter | December 2018

    Project Newsletter | December 2018

    Date

    The last two months of the build and development phase of the TKC have been very busy with both stakeholder engagement and application engineering

  14. Territory Kidney Care | Progress Report November 2018

    Date

  15. Project Newsletter | October 2018

    Project Newsletter | October 2018

    Date

    The build and development phase of the TKC system has continued with efforts focused on the areas of knowledge acquisition and engineering

  16. 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, SW. Chen, W. Balasubramanya, B. Talukder, MR. Pascoe, S. Whitehead, A. Sajiv, Cherian. Maple-Brown L. Kangaharan, K. Cass, A. 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, 2024 Accepted
  2. Chen W, Abeyaratne A, Gorham G, George P, Karepalli V, Tran D, et al. Development and validation of algorithms to identify patients with chronic kidney disease and related chronic diseases across the Northern Territory, Australia. BMC Nephrol. 2022;23(1):320.
  3. Chen, W., O'Bryan, C. M., Gorham, G., Howard, K., Balasubramanya, B., Coffey, P., . . . Cass, A. Barriers and enablers to implementing and using clinical decision support systems for chronic diseases: a qualitative systematic review and meta-aggregation. Journal Implementation Science Communications. (2022). 3(1), 1-20.
  4. Chen W, Howard K, Gorham G, et al. 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 2022: ocac110. doi:10.1093/jamia/ocac110