Unveiling Hidden Potential: The Underappreciated Benefits of Integrating Community Medical Perspectives into Research

Co-authored by Chris Ewert Community Representative and Evangelia Bishop, CaRE Coordinator

Monash University established the Consumer and Researcher Engagement program (CaRE) to facilitate mutually beneficial and meaningful connections between researchers and community members with lived experience as a patient or carer of the medical conditions being studied at the Central Clinical School (CCS)

CaRE is a planned process covering a broad range of interactions with the specific purpose of informing, consulting, partnering, and empowering community members to contribute to medical research through a number of approaches.

When pain after surgery becomes chronic

Authors: Paige Druce, with special thanks to community representative Chris Ewert for contributing to this article.

Pain after surgery is expected. Pain that lasts for days, or even weeks is normal, and usually nothing to be concerned about. But for some patients, pain can persist for months or even years and develop into chronic pain.

It can be hard to know when pain after surgery becomes chronic pain because the symptoms can range from mild to severe. However, the pain can be distressing and debilitating for the people it affects, including stabbing and tingling feelings, numbness, altered sensations and problems with sensitivity.

Chronic pain after surgery may depend on the operation undergone and is often difficult to treat, meaning there are no proven strategies for prevention. So, it’s one of the most important research priorities in Perioperative Medicine – the area of medical care that covers the time from surgery being considered, through the operative period, to the patient’s full recovery. 

Grant success through community engagement: CaRE webinar

The video is available for CCS staff and students
via the CCS intranet: Link

 by A/Prof Bridgette Semple on behalf of the Community and Researcher Engagement program, CCS

Are you a researcher interested in working with consumers to write compelling grant applications? Do you want to know more about how to make these grant applications more competitive? If so, you’ve come to the right place! 

On Wednesday 30 November 30 2022, the CCS’s Consumer and Researcher Engagement (CaRE) program committee hosted an informative webinar entitled ”Engaging consumers in grant success.”

Community access cutting edge research at the CCS

Community representatives were very engaged with the presentation

Community and Researcher Engagement, Myeloproliferative Neoplasms, 2022

by Dr Juliana de Castro, CaRE committee member

The Community and Researcher Engagement (CaRE) program from the Central Clinical School at Monash University hosted a hybrid seminar called ‘Myeloproliferative Neoplasms – Towards Precision Medicine’ at the Betty & John Laidlaw Education & Innovation Hub on Thursday, 13 October 2022.

What we know about the brain and how it changes with dementia

MRI scan image showing change in volume over 12 months.
Image: Dr Lucy Vivash, CCS

With dementia being one of the leading causes of death and a significant cause of disability in Australia, particularly in older populations, most of us will—at some stage, and in some way—be touched by the disease. 

The Consumer and Researcher Engagement (CARE) Committee in the Central Clinical School is offering a webinar on Wednesday 18 May at 5.30-7.00 pm which will cover a range of relevant topics and perspectives relating to dementia, from the perspectives of those affected by the disease, clinicians, and researchers. Register here

Visual Snow Syndrome research challenges: Rare Disease Day feature

L-R: A/Prof Jo Fielding says of Visual Snow that "it is very difficult,
if not impossible to diagnose"; and patient advocate Patricia says VSS
is "quite challenging". See video (1:57 mins)

Part of our special series for Rare Disease Day featuring patient advocates and CCS researchers 

The Department of Neuroscience’s Associate Professor Joanne Fielding is involved in research on Visual Snow Syndrome (VSS), a neurological condition primarily affecting the processing of sensory information. Even though it is thought to affect up to 2% of people, it is not widely recognised or diagnosed correctly by the medical community. 

Brain disease patients to benefit from CCS-led study: Rare Disease Day feature

L-R: Patient advocate Amanda and CCS researcher Dr Mastura

Monif talk about the experience of living with the illness and the

challenges of research into the disease. See video (2:19 mins).

Part of our special series for Rare Disease Day featuring patient advocates and CCS researchers 

The Department of Neuroscience’s Dr Mastura Monif is involved in research about Autoimmune Encephalitis, which affects 5-15 in 100,000 people. Autoimmune Encephalitis is a type of brain inflammation caused when the immune system mistakenly attacks healthy brain cells.  

Awareness day brings rare diseases out of the shadows

CCS researchers have teamed up with patient advocates to give

insight into living with the illness and the research challenges

to understand the disease for improved diagnosis and treatment.

See video playlist or see below for links to specific videos.

Today, 28 February, the Central Clinical School’s Community and Research Engagement (CCS CaRE) program is participating in a global Rare Disease Day, to raise awareness of rare diseases and showcase some of the research that goes into rare diseases now being undertaken across the school.

CaRE in action: patients key to blood cancer lobbying success: Rare Disease Day feature

L-R: Patient advocate Ken and researcher Professor Andrew
Perkins talk about the experience of living with the illness and
the challenges of research into the disease. Video (2:19 mins)

Part of our special series for Rare Disease Day featuring patient advocates and CCS researchers  

Clinician-scientist Professor Andrew Perkins, who heads the Blood Cancer Genomics team at the ACBD, has for 12 years researched myeloproliferative neoplasms (MPNs). MPNs are a diverse group of chronic blood cancers. Myelofibrosis (MF) is at the severe end of the spectrum. 

Brain imaging reveals insights into movement disorder: Rare Disease Day feature

L-R: Patient advocate Marcus and CCS researcher Dr Ian Harding
talk about the experience of living with the illness and the
challenges of research into the disease. Video (2:09 mins)

Part of our special series for Rare Disease Day featuring patient advocates and CCS researchers 

Friedreich ataxia (FA) is a debilitating genetic disorder that causes progressive damage to the nervous system and heart. Defined by problems with gait, balance and motor coordination, speech and swallowing, its symptoms generally start in childhood or adolescence and progressively worsen, causing increasing difficulty with basic daily activities and self-care, and ultimately leading to premature death 20 to 30 years after first symptoms. It affects 2-4 people per 100 000.

Dr Ian Harding and his team in the CCS’s Department of Neuroscience have recently made some exciting advances in knowledge using a variety of magnetic resonance imaging (MRI) and positron emission tomography (PET) brain imaging techniques.

Scientist seeks clues on ‘missing’ parts of immune system: Rare Disease Day feature

L-R: Patient advocate Nadine and CCS researcher Dr Emily
Edwards talk about the experience of living with the illness and the
challenges of research into the disease. See video (2:05 mins)

Part of our special series for Rare Disease Day featuring patient advocates and CCS researchers

Dr Emily Edwards, a Research Fellow with the Monash Department of Immunology and Pathology at The Alfred precinct, is working to uncover the DNA errors or genetic variants that cause Primary Immunodeficiency (PID), a rare inherited condition where part of the immune system is missing or not functioning as it should.

Rare disease funds to boost pancreatic and blood cancer studies: Rare Disease Day feature

Adj A/Prof Charles Pilgrim and Prof Andrew Spencer describe

their newly funded MRFF research and how it will help patients.

Early this month Central Clinical School researchers were awarded funding under the MRFF’s 2021 Rare Cancers, Rare Diseases and Unmet Need (RCRDUN) program. 

As part of Rare Disease Day today, we asked two CCS researchers - Charles Pilgrim from the Department of Surgery, and Andrew Spencer from the Australian Centre for Blood Diseases - working with rare diseases about the research being funded.

Giving prominence to the patient perspective: Launch of the CARE webinar series

Register for the inaugural CARE seminar on 7 October featuring
Dr Durga Mithraprabhu, Dr Nick Bingham, Prof Andrew Spencer
(pictured L-R here), Dr Tiffany Khong and a patient advocate,
Mr Henry Blatman from the Spencer group.

by Drs Catherine Carmichael and Karen Alt

There is an increasing awareness within the health and medical research community that including the patient perspective in research design and implementation greatly enhances the significance, relevance and quality of research outcomes.  Patients, family members and carers (collectively termed “consumers”) bring their valuable lived experience to research teams and contribute to a shared goal of turning new discoveries into better patient outcomes.