May 2023

Funding strengthens CCI in research
Congratulations, John Stubbs AM - chair of MRFF Consumer Reference Panel

To strengthen consumer and community involvement in research, the Australian Health Research Alliance (AHRA) has been granted close to $1M in funding from the Australian government through the Medical Research Future Fund (MRFF).

The MRFF supports researchers in conducting ground-breaking medical research discoveries to help improve diagnosis, treatment and care for people with various health conditions. This research will help to embed consumer and community involvement (CCI) in research to improve relevance, translation and health impact.

The research aims to:

Build a network of engaged and upskilled consumers
Develop an innovative digital knowledge and practice hub for tools and resources
Generate new knowledge to enable behavioural change towards consumer and community involvement
Introduce implementation resources to enable national scale-up.
Engage under-represented community groups in health research, including Aboriginal and Torres Strait Islander communities.

John Stubbs AM has been appointed as Chair of the Medical Research Future Fund Consumer Reference Panel (CPR). John is a former Health Consumers NSW Board Member and long-time health consumer representative leader,

The CRP aims to strengthen consumer involvement in the implementation of the Medical Research Future Fund. This will help to:

fund research that has the best opportunity for improving the health and wellbeing of individuals and their families and carers
improve consumer confidence in and engagement with the MRFF, by providing consumers with a more formal and clear communication channel into the MRFF.

John joins other experienced consumers on the panel. Congratulations from all of us at HCNSW. We can't wait to see the impact these representatives will have.

More about the funding through the MRFF
More about the MRFF Consumer Reference Panel

Five Key Necessities for Youth Engagement

The Walking the Talk project is launching its latest work elaborating on its Youth Engagement Guide, the ‘Five Key Necessities for Youth Engagement’. To put these Five Key Necessities into practice, Walking the Talk has developed five new webpages with various features dedicated to each area of Youth Engagement. One webpage will be launched every Monday until the end of May!

Along with the new webpages, a survey has been created for each Necessity, to gather further insight directly from young people (14-25) about what they would like to see from organisations and services in the future. All surveys will be open until the end of May 2023, please feel free to share these links with any young people in your lives or networks!

Click here to access the surveys.
Click here to check out the Five Key Necessities Homepage!

HCNSW Board news

The Health Consumers NSW (HCNSW) Board of Directors met on 21 April.

During the meeting, the Board approved HCNSW’s new 2023-2026 Strategic Plan. The plan lays out our strategic direction for the next 3 years and will come into effect on 1 July 2023. The plan will be launched in June.

The Board also updated HCNSW’s Privacy and Personal Information Protecting Policy and approved our new Feedback and Complaints Policy. The updated Privacy policy can be found on our website [www.hcnsw.org.au/privacy-policy]. A copy of our Feedback and Complaints Policy will be available from our updated website (launched in July) and people can obtain a copy by emailing info@hcnsw.org.au.

The next Board meeting is scheduled for Friday 21 July.

APIC3 Sydney: Call for papers

Health Consumers NSW is co-hosting, together with the International Federation of Integrated Care and others, the 3rd Asia Pacific Conference on Integrated Care (APIC3) from 13-15 November 2023, in Sydney.

Abstracts are now open, and we’d like to hear from consumer and community representatives who have been involved in projects that have improved integrated care. We invite you to submit an abstract and tell us about your project in 500 words or less.

Find out more and submit your abstract HERE.

There will be complementary registrations for patients and consumer representatives. We will send details about this as soon as registrations open.

We are looking for sponsors and supporters who can assist with travel and accommodation for consumers. If you or your organisation would like to support consumers to attend, please contact HCNSW info@hcnsw.org.au or the conference organiser.

Register NOW for our 2023 health consumer representative training teaching periods

Find out more and register yourself (health consumer reps) or your reps (health engagement staff) - only two study periods this year left!

You might have done our introductory free online short course but to really take a deep-dive into health consumer representation in NSW you can't beat our Exploring Consumer Representative Training for health consumer representatives.

Register now for one of our 2023 teaching periods!

CR201 – Exploring Consumer Representative Training

Our Exploring Consumer Representative Training provides education, support and networking opportunities for health consumers engaged in advocacy and representative roles within health services.

Teaching period 3: 17 June – 25 August 2023

Teaching period 4: 9 October – 17 November 2023

Download the flyer HERE.

Graduate Certificate in Consumer and Community Engagement

Are you looking to explore what it means to effectively and respectfully engage with consumers across all levels of health services? The NSW Graduate Certificate in Consumer and Community Engagement is back.

We have, again, partnered with the Health Issues Centre in Victoria and the Benchmarque Group to provide the Graduate Certificate in Consumer and Community Engagement course, specifically tailored for NSW.

When: Thursday, 31 August & Friday, 1 September and Thursday, 14 & Friday, 15 September 2023, 9:30am-4:30pm each day

Where: Sydney Mechanics’ School of Arts, 280 Pitt Street, Sydney NSW 2000 (google map link)

Cost: AUD 2,915.00 (incl. GST) per person

Find out more and enrol now

Consumer and personal stories

Meet Bobby Redman, a volunteer story from StepUp for Research

Bobby is a retired psychologist. She lives alone and has a daughter and three grandsons, who she describes as “the centre of my world”.

At the age of 66, Bobby was given a provisional diagnosis of mild cognitive impairment or frontotemporal dementia after experiencing a range of symptoms, including “a noticeable change in my ability to perform day to day tasks, some issues with speech and my ability to follow conversations, and personality changes picked up by close friends”, she says. Since then, despite clear cognitive decline picked up by tests and brain scans, Bobby explains that the “doctors have yet to pin down which specific type of dementia I have”.

Following her diagnosis, Bobby committed herself to Dementia Advocacy - creating awareness, giving support and participating in dementia research.

Read Bobby's full story HERE.

VIDEO: Sydney performance raises awareness of people suffering from dementia

The production - published on the ABC News website and called To Whom I May Concern aims to redefine perceptions of the disease and promotes kindness towards sufferers.

Bobby Redman was part of this performance.

News and current affairs

Essure contraceptive device class action lawsuit to begin in Supreme Court of Victoria

Read the ABC News article HERE
Read the 9 News article HERE

"Female contraceptive device 'bad idea from the start', class action lawyers say."

When HCNSW hosted a panel discussion in 2018 about the problems with medical devices, we had a guest on the panel who talked about her experiences with Essure. So we wanted to keep you informed about this topic.

Have your say

HEALTH AND MEDICAL RESEARCHERS WANTING YOU

Opportunity to co-design decision support tools for sarcoma patients

Who: University of Technology Sydney (UTS)
Deadline: Wednesday, 3 May 2023

What
A multi-disciplinary team of UTS researchers is seeking members of the sarcoma community to co-design decision support materials that can help guide patients through their sarcoma journey.

Who
The project team includes Associate Professors Deborah Debono and Jo Rivers, Professor Jon Adams and Dr Barbara Doran. They are interested in engaging with sarcoma patients and their families or support people who are interested in co-designing a study to develop interventions that help patients through their sarcoma journey.

How
The co-design process would involve a single hybrid workshop that can be attended online or in-person in May. The workshop would take around 2 hours and you might need to do some pre-reading, provided to you via email. Participants would be given the option to remain involved in further co-design if the proposed project is successfully funded.

Remuneration and support for reps
The successful representatives will be paid $50/hour for their involvement and any travel expenses will be covered.

More information
You can contact Andrew Ellery for more information or to express your interest via email at andrew.ellery@uts.edu.au or on 0472 839 539.

Photo: Some of the patient journey resources developed by the research team previously

Guidelines for Community Involvement in Genomics Research

The Involve Australia Working Group and Australian Genomics would like to invite you to participate in a consultation seeking your input on the newly developed Guidelines for Community Involvement in Genomics Research as a part of the Involve Australia project. These guidelines aim to support researchers and the community to create collaborative genomic research projects.

The team defines community involvement as community members actively working with researchers and research organisations to help shape decisions about health research priorities, policy and practice.

The purpose of this consultation is to gain the insights of stakeholders involved in genomics research, including researchers, community members, clinicians, patients, patient advocacy groups and peak bodies. Your input is vital to ensuring the guidelines are fit for purpose and are implementable.

Please use THIS survey to provide your feedback on the guidelines.

There is an option to complete a brief review or give detailed feedback. We believe it will take around one hour to review the document and complete the brief survey, and around two hours to review the document and complete the detailed survey. You will have the option to save and come back to finish the survey later.

This consultation closes on the 26th of May 2023. Please email Keri Finlay via keri.finlay@mcri.edu.au with any questions or concerns.

Join a research team investigating how to reduce the rate of hospital acquired pneumonia

Who: Avondale University and a wider research team are look for a consumer representative.
Deadline: Expressions of interest are open until 19 May 2023.

What
Professor Brett Mitchell and a team of clinicians and academics are investigating how to reduce the rate of hospital acquired pneumonia by improving oral care in hospitals. Hospital acquired pneumonia is the most common infection acquired in hospital, affecting around 50,000 people each year in Australia.

Who
We are looking for consumers who:

Have an interest in preventing infections in hospitals
May have first-hand experience in acquiring an infection in hospital
Are willing to provide input into a clinical trial which aims to reduce the rates of hospital acquired pneumonia.

How
The research team will have a partner advisory group, which will meet 2-3 times per year (virtually via conference). Meetings will be around 1 hour long. There might be some pre-reading, provided via email. We would love our consumer representative to be part of this advisory group. There may also be some occasional contact via phone or email, to follow up on topics or discussion from the advisory group.
Our partner advisory group will provide the research team with important perspectives when designing, implementing and evaluating the clinical trial. You will get a chance to be part of a world-first trial in this area. The input of our advisory group will be recognised in many ways, including on social media, website, publication and presentations.

Remuneration and support for reps
We will offer successful representatives $80 for each advisory group meeting, recognising the time for the meeting and time for pre-reading and sporadic contact between meetings. We intend to provide this by way of a gift card.

More information
Find out more about this opportunity, please contact Professor Brett Mitchell – brett.mitchell@avondale.edu.au. To lodge your expression of interest, please provide either a cover letter or simply write an email to Professor Mitchell. We are keen to ensure this is beneficial to our consumer representative and us. So, in your expression of interest, if you feel comfortable telling us why this is of interest to you, it would be appreciated.

Photo: Professor Mitchell in his workspace at Avondale University.

The National Rural Health Alliance is seeking submissions for Partyline

The National Rural Health Alliance is now seeking submissions for Partyline Issue 83, to be published in June 2023. You can read the latest issue here.

Partyline calls for contributors to share stories about rural health research that contributes to improved accessibility and aims to ensure sustainable, equitable and affordable health care for regional, rural and remote communities.

They are looking for a diversity of stories that demonstrate how the findings of research can be used to benefit the health outcomes of people living in rural Australia.

Please read the full contributor guidelines before submitting your article.

Submissions are due by COB Wednesday 10 May 2023 to partyline@ruralhealth.org.au.

Consumer Engagement in Precision Medicine Workshop

Precision medicine is an approach and treatment that considers people’s individual variations in genes, environment, and lifestyle.

Precision medicine allows doctors to select treatments based on a genetic understanding of a patient's disease. Along with this comes the ability to predict which treatments will work best for specific patients.

Sydney Local Health District’s Institute of Precision Medicine & Bioinformatics is hosting an information workshop for health consumers and community members to highlight the advances presented by precision medicine and opportunities for consumer involvement in research.

When and where: Thursday, 11 May 2023, 10am to 12.30ppm at RPA Hospital, Missenden Road, Camperdown

Reserve your place and get the flyer and program sent to you by emailing: SLHD-IPM&B@health.nsw.gov.au.

HEALTH ORGANISATIONS WANTING YOU

Seeking Consumers/Carer Representatives to be part of activities relating to Trauma, Pain, and Rehabilitation

Do you want to make a difference?

Have you and/or someone you have cared for received health services relating to:

major injury
rehabilitation
ongoing pain
drug and alcohol management

If yes, then there is an opportunity for you to have your voice heard and be a part of building better health services for people in NSW. ACI values culture and diversity and aim to include people from all walks of life and from different communities in all their work.

The Agency for Clinical Innovation (ACI) values working with health consumers to:

learn about their unique, real-life experience,
ensure that our work is relevant and meaningful to patients and carers,
help improve health outcomes for the people of NSW.

There are seven Networks within ACI that form the Trauma, Pain, and Rehabilitation (TPR) stream. These networks are:

Trauma and Injury
Pain
Drug and Alcohol
Brain Injury
Spinal Cord Injury
Burns
Rehabilitation

ACI is seeking health consumers to partner on a variety of projects and activities in an ongoing way. Some examples of activities include:

Developing and reviewing publications for patients and families (e.g. factsheets, pamphlets, posters).
Exploring ways to improve services and plan for the future.

What does this mean for you?

You will be a member of the TPR Consumer Group. This means that you:

can share valuable insights and represent the perspective of consumers using your lived experience.
will be notified about different partnership activities as they arise.
can choose to take part in the projects and activities that interest you the most.
may have busy phases and quiet times - where no activity occurs, sometimes for several months.
will be supported by the broader ACI consumer community. This community holds networking and learning opportunities throughout the year.
will be a volunteer and reimbursed for out-of-pocket expenses (i.e. travel, parking, and childcare)

Contact ACI

If you are interested in making a difference by becoming part of the TPR Consumer Group, please email the TPR Consumer Coordinator ACI-TPRConsumer@health.nsw.gov.au. ACI will provide information regarding the next steps and answer any questions about the TPR Consumer Group.

Expressions of interest close at midnight on Friday 12 May 2023.

Seeking your input on a TGA sunscreen consultation paper – Clarification and updates to the regulation of sunscreens

TheTherapeutic Goods Administration (TGA) has published a consultation paper on sunscreens – ‘Clarification and updates to the regulation of sunscreens’ which can be viewed at:
https://consultations.tga.gov.au/medicines-regulation-division/updates-to-regulation-of-sunscreens/.

The purpose of the consultation is to seek stakeholder feedback on any positive or negative impacts the proposed amendments may have on businesses and/or consumers. This information will be used to help inform the Government’s decision on whether or not to implement any of the proposals by amending the relevant legislation.

TGA is seeking to canvas input from a wide range of stakeholders, including industry, consumers and health professionals.

The consultation paper covers the following topics:

Proposed adoption of the latest Sunscreen Standard (Australian/New Zealand Standard Sunscreen products - Evaluation and classification AS/NZS 2604:2021 Amd 1:2022)
Proposed removal of the category of ‘exempt’ sunscreens and previous transitional arrangements (from the Therapeutic Goods Regulations 1980) which enables sunscreen products with less than SPF4 (that were supplied in the market prior to 9 November 2012) to comply with the superseded 1998 Sunscreen Standard (AS/NZS 2604:1998) and be exempt from the requirement to be included in the ARTG.
Clarification of the indications (therapeutic uses) that sunscreens can make. Three options are proposed for stakeholder consideration.

While feedback on all issues is welcome from all stakeholders, consumers and health professionals will likely be more interested in issue 3, as issues 1 and 2 are more technical.
If a topic is not of interest, you do not need to provide a response.

The consultation period closes at 5pm on 31 May 2023.

Events

Join NSW Health as we gather to be inspired and reconnect

NSW Health is celebrating Human Experience Week, (1 – 7 May). Human Experience Week recognises that the experiences of our patients, their families, and carers cannot be separated from the experiences of our caregivers (staff and volunteers).

In partnership with Western Sydney, Southern NSW, Illawarra Shoalhaven, and Central Coast Local Health Districts, NSW Health is thrilled to be delivering a hybrid program, offering in-person and virtual sessions.

Throughout the week, you will join NSW Health staff and consumers, and best-selling authors, Dr Rana Awdish and Ben Bravery host conversations about All of Us: the Power of Community and the importance of love, belonging, and healing in elevating human experiences.

You can expect to be immersed in new ideas, innovation, with best practice and new information introduced.

Program: 2023 Human Experience Week Program
Registrations are now open.

It's time for health consumers to be heard

Add your voice to the Consumer Health Forum's (CHFs) campaign for consumer-driven health reform: 30 years of talking. Now it's time for action!

When Medicare was introduced in 1983, it gave the gift of universal healthcare to all Australians. However, by 1993 gaps in the system started to emerge and so began 30 years of reports, reviews and roundtables on how to fix our primary healthcare system.

For all these years Consumers Health Forum has advocated strongly on behalf of Australian health consumers, most recently as part of the Strengthening Medicare Taskforce. However, the time for talk is over. It’s time for action.

Join the campaign HERE.

Meaningful partnerships with mental health consumers and carers – strengthening research and clinical care

Date: Thursday 4 May, 1pm to 2pm AEST online

Speaker: Professor Graham Meadows, prominent figure in innovation and evaluation in mental health care in Australia, with national and international profiles in areas such as GP shared care, resource distribution, applications of mindfulness in clinical mental health practice, and recovery-oriented practice.

REGISTER

HOW DO I JOIN?
To register your interest in the project, please fill out the online screening form using this link: shorturl.at/osvX4. You will then be contacted by the research team to confirm your eligibility for the program.

If you have any questions, please email: b.cowlishaw@westernsydney.edu.au

Resources

Advice on best practice consumer involvement in MRFF-funded health and medical research

Find out more HERE

The MRFF Consumer Reference Panel has developed advice on best practice consumer involvement in MRFF-funded health and medical research. This advice includes:

principles for consumer involvement
implementation guidance
a future work program.

These principles aim to encourage and support effective collaboration between:

consumers
researchers
research organisations
other health and medical research stakeholders.

Effective consumer involvement is important for building the quality, outcomes, relevance, impact and international competitiveness of MRFF-funded research.

Become a HCNSW member - it's free to join!