Melanoma March 2017 helping kick start the Big Data for Melanoma national Research Project!
11 May 2017
Thank you so much
Thank you so much to all those who contributed in a variety of ways to Melanoma March 2017 in 17 different locations and more around the country! Whether you registered online and fundraised, registered on the day and marched, worked on a volunteer Committee, donated prizes….you have contributed to getting the Big Data for Melanoma national Research Project happening!
What is the Big Data for Melanoma national Research Project?
This project, which is supported by Melanoma March 2016, 2017 and 2018 is about saving lives lost through system failure: not all patients obtain care that follows best practice. A national register of key outcomes in melanoma will enable everyone with a stake in melanoma prevention, detection and care to see where improvement is needed, and enable us all to learn how to change care for the better. This project will demonstrate in a suitable range of pilot sites that an Australian Clinical Outcomes Register for Melanoma is feasible, discover how it must work, and provide the business case to attract the expanded support necessary to apply and implement it nationally.
Melanoma is gradually becoming less common in the young, due to better sun protection, but overall there are 20-30yr left to run before melanoma rates fall substantially in Australia, no matter how much prevention improves. Our main weapons to control melanoma are early detection and prompt, effective treatment.
The national health cost burden of melanoma was estimated at $500m/yr from 2010 NSW data. Since then new, effective drug and immune treatments for metastatic melanoma have dramatically increased the cost of treating it, and careful application of these treatments after initial surgery promises to cure people whose melanoma would otherwise return after surgery. So the stakes for “getting it right” at each stage of melanoma have never been higher.
A great deal of effort is invested to describe to doctors and the community how best to diagnose and treat melanoma, notably in documents such as the Guidelines for Management of Cutaneous Melanoma (ACN 1997, 1999, 2010; 2017 under revision). However, as in all areas of health care, the evidence says that not all people with melanoma receive optimal treatment. For example, fewer than two thirds of melanomas in Victoria in 2000 were removed with a wide enough margin of skin, and in 2006 in NSW 21% still fell short. Only 17% of melanomas in NSW in 2006 were staged correctly using surgery to check the lymph nodes. Gaps such as this are a massive opportunity to save lives.
Clinical outcomes registers aim to track the most important steps of a patient’s treatment. If this is done across the nation, then research through the register can show where and why gaps exist, and therefore what can be done to change that for the better. The very process of collecting this information, and sharing it, has been shown to produce improvement in patient care.
This project aims to establish a pilot and prototype of a national clinical outcomes register for melanoma.
What’s happened so far?
The concept was circulated among the Australian melanoma research community (over 50 biomedical, translational and clinical researchers) in Dec 2015-Mar 2016, and received strong support.
The group that was originally consulted reconvened 28 Nov 2016 by teleconference in conjunction with a meeting of the national Cancer Australia Melanoma Guidelines Working Group. They agreed to proceed to design and launch a project that in 12-18 months would demonstrate feasibility of coordinated registration and data collection of key melanoma outcomes from selected participating centres in a range of contexts: melanoma centres, specialized private practices, skin cancer clinics and primary care.
Under an interim Steering Committee, a workshop was convened on 27 March 2017 at Melanoma Institute Australia that agreed on broad goals and authorized an Executive Group to launch the pilot project.
What does the pilot project look like?
The project aims to show the feasibility of coordinated registration and data collection of key melanoma outcomes from participating centres nationally, in a range of contexts: melanoma centres, specialized private practices, skin cancer clinics and primary care. These feasibility data and preliminary evidence obtained on outcomes would support accelerated applications to fund and establish the register nationally, to cover at least 98% of eligible patients.
In this pilot project, the key clinical outcomes to be registered will be, for new primary melanoma, the adequacy of:
- diagnosis (biopsy type/success, time to excision, margins, staging)
- definitive therapy (margins)
- patient support
It is recognised that registration of patient support outcomes will likely require specific development to incorporate patient-recorded outcome measures (PROM). Since these are not yet widely adopted in clinical practice the register project will help drive these innovations in melanoma care.
Phase 1 of the project will, over six months:
- finalise the Register governance, design and protocol
- establish its team and support framework
- select and commission participating sites, including ethical and governance approvals
- select and commission the data collection platforms
- engage stakeholders: health jurisdictions, cancer NGOs and community
- plan for phased implementation options, dependent on securing further external funding
- prepare applications for further competitive and non-competitive funding
Phase 2 will, based on available resources, by end 2018:
- initiate and ramp up Register data collection in all pilot sites
- collate and analyse process and performance data to test feasibility in each site against the goal of 98% coverage
- identify barriers and enablers of Register performance
- analyse and report evidence of the clinical outcomes in the register pilot sites.
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