Spinal cord injury registry to help NZ patients

Healthy Together | Healthy Services

Each year over 100 people in NZ are diagnosed with spinal cord injuries, resulting in a life- long connection with the health system. Until now health organisations in NZ haven’t had a record of all spinal patients, but that’s about to change with the introduction of a national registry, launched by ACC Minister Nikki Kaye on 1st August 2016.

Rick Hansen NZ launch_01-08-16_28
Left to R: Dr. Peter Robinson (ACC), Geraint Martin (CM Health), Hon. Nikki Kaye (ACC), Bill Barrable (RHI), and Prof. Ian Civil (ADHB)

In a world first, the Rick Hansen Spinal Cord Injury Registry (RHSCIR), in partnership with ACC, have helped spinal units in Burwood and Middlemore Hospitals to develop a customised registry that will be used to improve the understanding and treatment of spinal cord injury.

The registry tracks the experiences and outcomes of people with traumatic SCI during their journey from acute care to rehabilitation to regular follow-ups in the community. Details about participants’ spinal cord injuries including the extent of injury and level of paralysis, recovery, and success of various treatments are among the data recorded. The use of this rich and valuable information will enable clinicians to improve the quality of life for people living with spinal injuries and reduce the myriad of possible complications that can arise following an injury of this type.

“The more information we capture, the better we can identify how people are progressing, and if they’re receiving the right treatment and support”, says Hon. Nikki Kaye. “We can also shape services to better meet people’s needs.”

Novel therapies can also be studied and new ways of treating SCI can be explored. For example, it used to be thought it was best for patients to lie immobilised for a couple of days before spinal surgery. Now we know it is essential for patients to be transferred to a specialist spinal centre as quickly as possible for immediate surgery. This has much improved outcomes as well as reducing the burden on the health system.

Bill Barrable, CEO of the Rick Hansen Institute congratulated NZ for being the first country outside of Canada to adopt the register. “This decision demonstrates a commitment to excellence in performing research that improves the delivery of care and health care outcomes for individuals with spinal cord injury. We look forward to RHSCIR providing the opportunity for further collaboration on future projects,” he said.

Unlike randomised trials, registries provide a large heterogeneous group of patients who have received normal clinical care, have not been selected to avoid concurrent treatments or other medical problems and are followed up based on usual visiting schedules. This creates the ability to review the effectiveness of treatments and management in a real world context.

Information from registries can be used for audit, planning, research and international comparisons. This plays a role in understanding trends and where to place preventative measures to address these. This is also essential in understanding how individuals move through the process of SCI in NZ and for staff to be able to answer patient’s questions knowledgeably, with supporting evidence from local sources.

There is growing evidence that registries result in cost savings by improving care. Properly funded and operated national clinical registries can make measurable differences to the cost, quality and safety of care. The Rick Hansen Register already contains information on over 4,000 spinal patients. In New Zealand, we have attempted to establish our own SCI for over 40 years, but we have failed to develop a robust, sustainable high-quality product. Following a successful pilot at Burwood Hospital, Christchurch, ACC agreed to commit to ongoing funding to ensure the day-to-day costs associated with running and maintaining the database were covered.

Before I sign off I want to mention the Living Well Centre, one of the projects we’re planning for the Manukau SuperClinic site that, like the RHSCIR, has a strong link to improving the quality of life for people with SCI.

The Living Well Centre is the conceptual name for a state-of-the-art wellbeing centre that will bring together community wellbeing services, specialist rehab services (for the district, the region and the North Island), and physical activity, recreation and sport. It will also include a new North Island spinal rehabilitation centre of excellence.

This is an exciting project that has the potential to truly change lives. And what’s more, while these integrated centres are common overseas this will be a first for New Zealand. We are currently preparing a business case for Treasury and I’ll keep you up-to-date as things progress.

Geraint

Rick Hanson was 15 when he was paralysed from the waist down following a car accident. His dream was to prove the potential of people with disabilities and to make communities more accessible and inclusive. Inspired by a deep-seated belief that anything is possible, Rick’s “big dream” took shape in the form of the Man In Motion World Tour. For 26 months, he and his team wheeled more than 40,000km through 34 countries, raising awareness of the potential of people with disabilities.

Following the Tour, Rick established the Rick Hansen Foundation to continue his quest for an accessible and inclusive society and a cure for spinal cord injury.

 

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Author: Geraint Martin

Geraint Martin was appointed Chief Executive Officer of Counties Manukau DHB in December 2006. It is one of the largest District Health Boards in New Zealand and services a population of half a million. He has significant experience over 30 years in national policy & in managing both primary and secondary care . Previously, he was Director of Health and Social Care Strategy at the Welsh Government .He authored a radical 10 year strategy of reform, including the successful “Saving 1000 lives” Campaign.Until 2004, he was CEO at Kettering General Hospital & had held senior positions in London & Birmingham.He has worked closely with clinicians in improving clinical standards,patient safety,chronic disease management & managing acute care to reduce hospital demand.In NZ, He has promoted clinical quality and leadership as central to improving patientcare. This has led to a significant increases in productivity and access, whilst maintaining financial balance. CMH has completed in 2014 a $500 m capital redevelopment programme, the largest in New Zealand. A central part of this is the establishment of Ko Awatea,the Centre for Innovation and Research which will underpin CMH as one of the the leading health systems in Australasia.In 2008, he chaired the Ministerial Review of Emergency Care in New Zealand, and in 2013 was an member of the Expert Advisory Panel on Health Sector Performance. Geraint has an MSc in Health Policy from Birmingham University .His post-graduate work has focused on health economics and Corporate Strategy . He is adjunct Professor of Healthcare Management at AUT and Victoria University, Wellington Elected in 2006 as a Companion of the Institute of Healthcare Management, previously he was an Associate Fellow at Birmingham University.He is is Chair of the Auckland Philharmonia Orchestra, a member of the Institute of Directors, on the Board of the NZ Institute of Health Management & previously the Board of The NZ Health Quality and Safety Commission.

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