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Rheumatic heart disease patients among those to benefit from new research funding for DHBs

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heart-formed stethoscope with electrocardiogram reading in background
Dr Rachel Webb

Dr Rachel Webb, paediatric infectious diseases specialist

An all-new approach for the early detection of rheumatic heart disease will be developed and tested as part of a suite of new research to be carried out by some of New Zealand’s district health boards (DHBs).

With its brand new Health Sector Research Collaboration Grants, the Health Research Council of New Zealand (HRC) has collaborated with five DHBs around the country to drive health sector-led research that directly responds to health sector and community needs. The grants, designed to upskill and empower healthcare organisations to conduct more research, are being piloted with DHBs with the aim of being extended to other health providers in the future.

“Health research is very often academic-led or pharma-led. This is all about asking DHBs to take the lead on health delivery research that directly responds to health and equity priorities within their region,” says the Health Research Council’s chief executive, Professor Sunny Collings.

“There is true transformative potential in having our health sector conduct more research: learning and getting better at what they do and finding solutions to our big health challenges,” she says.

The HRC and the selected DHBs are finalising arrangements for a portfolio of research activities with a combined value of up to $3.96 million. One of the projects to be carried out at Counties Manukau District Health Board will focus on early detection of rheumatic heart disease – a serious condition that can follow on from acute rheumatic fever.

A team led by paediatric infectious diseases specialist, Dr Rachel Webb, will develop and test a new nurse-led approach for offering echocardiograms (heart scans) to siblings of children recently diagnosed with acute rheumatic fever (ARF) at Kidz First Children’s Hospital.

Despite evidence showing siblings of ARF patients have approximately three times the increased risk of rheumatic heart disease (compared to children in families where no one else is affected), siblings are not currently offered a heart scan or any additional health checks for rheumatic heart disease.

Dr Webb says workforce shortages are partly to blame, with not enough cardiac sonographers in many regions of New Zealand, particularly in areas where high levels of socio-economic deprivation co-exist with extremely high rates of cardiovascular disease. “In Counties Manukau, this has led to unacceptably long waiting lists for outpatient heart scans and to a very overstretched cardiac sonographer workforce,” she says.

“Counties Manukau experiences the highest burden of acute rheumatic fever and chronic rheumatic heart disease of any region in New Zealand, with almost all cases occurring among Māori and Pacific peoples. We all share an urgent responsibility to address this inequitable and unacceptable situation,” she says.

Making matters worse, the voice of patients and whānau has not been taken into consideration in the development and provision of health services for rheumatic fever and rheumatic heart disease, she says. “That means our current services may not align with the values and needs of Māori whānau and Pacific aiga. Concerningly, for our large high-needs population in Counties Manukau, there is also a notable lack of a culturally reflective workforce.”

Dr Webb’s team aims to improve access to scans by training Māori and Pacific nurses to perform focused echocardiograms for rheumatic heart disease and by implementing a trial programme for siblings of ARF patients.

Māori and Pacific health researchers led by co-investigators Dr Anneka Anderson, Dr Rachel Brown and Dr Florina Chan Mow will also facilitate interviews, hui and fono with whānau to understand their experiences of the process and their preferences regarding a sibling echocardiography programme.

“The training of nurse sonographers for rheumatic heart disease is a first for New Zealand and may go some way towards addressing health workforce shortages and improving rheumatic fever services in Counties Manukau,” says Dr Webb. She anticipates the project overall will improve patient and whānau engagement with frontline services as well as improve long-term outcomes for individuals by actively finding cases early.

“There is a good theoretical case for earlier detection of rheumatic heart disease. If a heart scan picks up rheumatic heart valve damage in the early (mild) stages, that person could have long-term treatment with penicillin and their health outcomes would typically be very good, with them leading a normal active life. Severe rheumatic heart disease, on the other hand, can lead to open heart surgery with devastating impacts on long-term health and wellbeing,” she says.

Professor Sunny Collings says the HRC is committed to strengthening health sector-driven research and has taken proactive steps to engage with DHBs and meet them where they are, in terms of readiness to undertake health delivery research.

“We were thrilled with the strong positive response we received from DHBs and for their willingness to work with us to pilot these completely new grants,” she says.

Below is the list of selected DHBs and a summary of the research they plan to undertake.

Health Sector Research Collaboration Grant recipients

Bay of Plenty DHB

  • Research Activation Grant

Dr Sarah Mitchell
He Pou Oranga: Developing a framework for integrating technology and health
$89,708

  • Research Career Development Awards

Leigh Haldene
Exploring the use of technology (LifeCurve App) to promote wellbeing among Māori
$109,600

Mariana Hudson
Developing skills and expertise in Kaupapa Māori research methodology
$83,000

Canterbury/West Coast DHB  

  • Research Activation Grant

Dr Cameron Lacey
Review of Māori consultation processes for research
$41,622

*A second research activation grant is in negotiation

  • Research Career Development Awards

Jane George
Rural early years: ‘What growing up well looks like for Coast kids’
$63,956

Dr Laura Hamill
Improving Care and Equity in acute medical decision making (ICare-Equal)
$67,324

Dr Gavin Harris
Developing computational pathology capability and expertise for breast cancer
$123,212

Emily Timothy
Conceptualising in-patient rehabilitation early intervention vocational services
$67,249

*A further research career development award is in negotiation

Counties Manukau DHB          

  • Research Project Grant

Dr Adrian Trenholme
Health care delivery of an early childhood intervention – impact and engagement
$588,093

Dr Rachel Webb
Implementation of evidence-based, whānau-focused care for ARF/ RHD in Counties Manukau
$451,266

*One more project grant is in negotiation

  • Research Activation Grant

Summer Hawke
Programme theory-based framework evaluating an equity-focused Smokefree innovation
$29,854

Dr Jennifer Parr
Working with Māori to build a Māori-centred model of care in a mainstream acute hospital in patient services
$30,000

Dr Adrian Trenholme
Implicit bias and Kidz First Hospital
$29,834

  • Research Career Development Award

Te Hao Apaapa-Timu
Development of a Māori research advisor for the advancement of Māori research
$142,960

Bobbie-Jo Pene
Understanding task and time: Evidencing fundamental care interactions
$133,674

Lakes DHB (Rotorua)   

  • Research Activation Grant

Ms Riripeti Haretuku
Te Mana Māori Wahine i te hapūtanga me te manaaki whaea, a Māori perspective
$90,000

Waikato DHB     

  • Research Project Grant

Professor Ross Lawrenson
The determinants of health for Māori mothers and adults with chronic diseases
$1,399,781

  • Research Activation Grant

Professor Ross Lawrenson
Māori communities in project governance - health research outcomes
$90,000