What a difference consumers make
Measuring the impact of consumer engagement in reserch: a consumer perspective
Why data is the engine to reform
Consumers as co-researchers: democratising results
Consumers in Focus
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10. What a difference consumers
13. South Western Sydney’s Local Health Forums attract vital community feedback
16. Consumers as co-researchers: democratising results
20. Why data is the engine to reform
22. Measuring the impact of consumer engagement in research: a consumer perspective
28. Community voices shaping Adelaide PHN
KYLIE WOOLCOCK Chief Executive AHHA
Consumers in Focus
The growing movement of value-based health care (VBHC) provides a framework for reorienting the health system to focus on the outcomes that matter to people and communities. It provides a structure to bring people together across different professions, clinical teams, services and sectors, to listen to what matters to people and communities and then use these insights to design models of care that drive value, quality and outcomes.
While this seems simple in theory, the realities of engaging consumers meaningfully in a safe and respectful way can be complex. This is particularly the case when faced with the many competing pressures that result from working within the health system. A common question asked is where and how do I start?
Gathering consumer insights can and has been achieved in multiple different ways — consumer forums, patient-reported measures (PROMs and PREMs), and yarning circles, among others. One method of growing interest is narrative storytelling,
where consumers are enabled to share their personal experiences interacting with the health system and their reflections on that interaction. It provides a mechanism through which consumers can highlight what matters most to them in their own words, at their own pace.
“While this seems simple in theory, the realities of engaging consumers meaningfully in a safe and respectful way can be complex.”
Consumers are the heart of the healthcare system, and other stories in this issue of The Health Advocate highlight their critical importance to improving care delivery and the resilience and commitment of consumer advocates. ha
AHHA in the news
30 MAY 2024
Improving access to restorative and wellbeing care for older Australians
Restorative and wellbeing care is essential for enhancing independence and self-confidence in older Australians and improving their quality of life. In Australia, residential aged care (RAC) residents are not receiving the recommended quantities and types of allied health care to support restorative and wellbeing care.
A Policy Issues Brief released by AHHA’s Deeble Institute for Health Policy Research, examines the barriers to providing restorative and wellbeing care for our ageing population.
The Policy Brief, coauthored by Isabelle Meulenbroeks, recipient of the Deeble Institute’s
2024 Jeff Cheverton Memorial Scholarship, and PhD Candidate at the Australian Institute of Health Innovation, Macquarie University, recommends bringing Australia into line with world leading health systems in delivery of restorative and wellbeing care in RAC.
The Jeff Cheverton Scholarship is supported by North Western Melbourne and Brisbane North Primary Health Networks. The Issues Brief ‘Restorative and wellbeing care in Australian residential aged care facilities’ can be accessed via the AHHA website. ha
HAVE YOUR SAY...
We would like to hear your opinion on these or any other healthcare issues. Send your comments and article pitches to our media inbox: communications@ahha.asn.au
11 JUNE 2024
11 JUNE 2024
Issues Brief
Harnessing data to improve patient care and prevent hospital-acquired complications
complications’, explores how by improving data collection and use, we could help reduce HACs and deliver better outcomes that matter to patients.
The Brief is co-authored by 2024 Deeble Scholar Dr Josephine Lovegrove, a Senior Research Fellow at Griffith University, and highlights several key policy recommendations. These recommendations target standardisation or reporting requirements, improving timeliness and streamlining publication by using fewer platforms, legislative reforms and developing co-designed approaches to publication with consumers. ha
AHHA Board Chair the Hon Jillian Skinner awarded Member of the Order of Australia
The Australian Healthcare and Hospitals Association (AHHA) congratulates our Board Chair, the Honourable Jillian Skinner, who was awarded a Member of the Order of Australia (AM) in the King’s Birthday 2024 Honours List.
Mrs Skinner was recognised for her significant service to the people and Parliament of New South Wales and to community health, having served as the state’s Minister for Health (2011-2014, and 20142017) and Minister for Medical Research (2011-2014, and 2014-2015).
Mrs Skinner responded to the accolade by saying, ‘Over my two decades in the NSW Parliament, I had the privilege of working with the vast array of skilled dedicated staff across NSW Health to upgrade and improve our 200+ hospitals, better linking them with community care and providing greater local control.’
We are privileged to have Jillian as AHHA Board Chair, where she continues to help guide in driving collective action across the healthcare system for reform that improves the health and wellbeing of Australians.
AHHA in the news
13
24July202
South Australia oralhealth workforce projections barriers:The importance of data
20 JUNE 2024
JUNE 2024 logic.
Paulina Lee | Member SouthAustraliaOral Health Plan Monitoring Group (08)7117 0043
E: Paulina.lee@sa.gov.au
This brief also outlines an informed framework for stakeholder engagement, with six key steps that include understanding the context, identifying the right stakeholders to engage, inviting them to participate, influencing and negotiating mutually beneficial outcomes, sustaining support and participation and monitoring and evaluating engagement. ha
Harnessing data to improve patient care and prevent hospital-acquired complications
Dr Josephine Lovegrove | 2024 Deeble Scholar Senior Research Fellow NHMRC Centre of Research Excellence in Wiser Wound Care, GriffithUniversity Herston InfectiousDiseases Institute, Metro North j.lovegrove@griffith.edu.au
AProf Rebecca Haddock Executive Director|Knowledge Exchange Deeble Institute for HealthPolicy Research Australian Healthcare andHospitals Association
Sponsor of the Deeble Scholarship
has been co-authored by 2024 Deeble Scholar Dr Prabhakar Veginadu, Research Fellow at the Menzies School of Health Research, Northern Territory.
Key recommendations of this Issues Brief include improving health training for rural and remote primary healthcare professionals, allowing primary healthcare professionals to include oral health care in their scope of practice, identifying oral health as a ‘core’ primary healthcare service, increasing interoperability and data sharing, and improving access to oral health care under Medicare for rural and remote populations.
The Deeble Scholarship is supported by HESTA. ha
Issues Brief
Enterprise Monitoring as a Service (EMaaS)
Gain access to critical patient monitoring capabilities aligned to your goals
What a difference consumers make
Better together in partnership
A revolution is underway in health services research and design, with the voices of consumers now essential to knowledge creation. Increased recognition of the importance of integrating consumer perspectives into health services research has opened diverse channels inviting consumer engagement in, including in consumer reference groups.
Here we showcase the experiences of the Consumer Reference Group (CRG) at the Australian National University’s Institute for Communication in Health Care (ICH). Established in 2021 by Dr Mary Dahm during the COVID-19 pandemic, the virtual CRG brings together patient advocates and health consumers from across Australia. Together with two consumer co-facilitators, Dr Ann Lawless and Dr Janney Wale, Mary convenes the group every six weeks to discuss the Institute’s current and future research projects.
The CRG is not just participating in ICH research— consumers are actively shaped by and shaping it— working hand-in-hand with researchers to co-design
studies, undertake literature reviews, analyse data and co-author publications. This collaborative partnership ensures that research is patientcentred, and also directly addresses language, content and patient communication needs, aligning academic inquiry with consumer lived experience. At the same time, researchers are becoming more comfortable talking about their research with us and we are developing trusted relationships
We focus on the potential of groups like ours to bridge the gap between academic and consumer expertise, ensure equitable research practices, and cultivate a culture of shared learning and leadership that will ultimately benefit healthcare delivery.
Bridging the gap: expertise and equity
Members bring to the CRG a tremendous wealth of knowledge and invaluable expertise about patient and caregiver experiences within the healthcare system. This deep understanding stems lived experience, participation on government and industry advisory boards and project management committees, as well as academic pursuits.
Reflecting on their experience collaborating with ICH researchers, CRG members highlight the value they bring to the partnership. ‘Each member brings their lived experience to the meetings and the Institute’s projects,’ says Marg Fagan. ‘We are a group with wide-ranging skills,’ adds Maureen Williams. ‘This enables us to share our personal stories and life experience as well as learning from each other. These collective skills are proving to be an important factor to researchers.’
Laila Hallam describes the beauty of collaboration stemming from the different strengths brought by consumers and researchers. Consumers’ expertise encompasses the emotional and practical realities of illness and, treatment, and care and offers a crucial counterpoint to researchers’ methodological strengths. ‘Bringing the two distinct areas of expertise together as equals,’ Laila explains, ‘allows expertise to surface; assumptions and biases to be outed, challenged and considered.’ This collaborative process leads to ‘analysis, insights and conclusions that are more considered, rigorous and balanced’.
DR MARY DAHM
ARC DECRA Fellow and Senior Research Fellow
LAURA CHIEN
PhD candidate and Research Officer
BRIAN DALTON
Consumer representative
MARG FAGAN Consumer
LAILA HALLAM Consumer partner
SANDY THOMSON Consumer
MAUREEN WILLIAMS Patient advocate
DR JOCELYNE BASSEAL Consumer
DR PENELOPE BERGEN Consumer
DR ANN LAWLESS Health Activist
SONIA MARKOFF Consumer
DR BRIAN OSBORNE Consumer
DR JANNEY WALE Consumer
Learning from each other and leading together — a case study
Our Australian Research Council-funded project, led by Mary and supported by PhD Candidate Laura Chien, investigates the communication of uncertainty in emergency departments. Both researchers treasure the learning opportunities afforded by collaborating with the CRG, who have been involved since project’s inception.
‘Every meeting serves as an informal mentoring session,’ Laura says, ‘as I listen to our members critically engage with our work. They offer insightful perspectives and constructive suggestions for improvement in an open and collaborative manner’.
‘Working in partnership with CRG members ensures consumer perspectives are embedded in this project and generally in the institute’s research,’ Laura continues, ‘supporting community relevance and translational impact’. The consumers’ insights help ensure that our research is accountable to and ultimately benefits patients and caregivers. >
“The five 1-hour workshops introduced consumers to research principles, approaches and procedures, including research ethics, data analysis and the publication process.”
In this project, consumers and researchers are working collaboratively to:
1. Shape the study scope and research questions to ensure relevance
2. Provide advice and conceptual and practical input on the study design and consumer facing elements such as participant information sheets and participant interview guides
3. Support project delivery and quality, and ensure ethical safety of study participants
4. Involve two community-based researchers in analysing data
5. Integrate the groups’ perspectives in interpreting results
6. Involve consumers in sharing findings through publications and conferences
7. Provide leadership opportunities for consumers on the project advisory board
As part of the project, Mary collaborated with the CRG and Health Care Consumers’ Association of the ACT to offer a free hybrid workshop series to build consumer research capacity, ultimately empowering them to actively shape and contribute to healthcare research. The five 1-hour workshops introduced
consumers to research principles, approaches and procedures, including research ethics, data analysis and the publication process.
A collaborative partnership
Although our group is just starting out, our achievements to date have recently been recognised with Mary being awarded the inaugural ACT Health CHARM Rising Star Award for consumerengaged research promoting inclusivity and transparency.
Mary is aware of the powerful potential and mutual benefits that genuine collaboration can realise. ‘Consumers offer invaluable perspectives enabling researchers to gain a deeper understanding of patient needs,’ says Mary.
‘Collaboration will be key to developing more relevant, effective, and empathetic healthcare delivery and communication strategies, and ultimately lead to better healthcare for all.’
We hope our collaborative mentoring and learning approach can serve as an inspiring example for others to explore the power of consumer involvement in research. ha
South Western Sydney’s Local Health Forums attract vital community feedback
Participants embrace opportunity to tell SWSPHN what matters
“Community members, health professionals and service providers are invited to join the forums which are held twice a year...”
A desire to find out exactly what their community wanted — or needed — when it came to health services prompted South Western Sydney Primary Health Network (SWSPHN) to begin hosting Local Health Forums in 2022.
Community members, health professionals and service providers are invited to join the forums which are held twice a year across several locations throughout the region, including in the Southern Highlands, Campbelltown, Liverpool and Bankstown.
This is to ensure the forums are accessible and represent the needs of South Western Sydney, as well as how they differ from region to region. It’s a chance for the community to share their experiences and discuss how the health of the region can be improved.
Ongoing health needs assessments are a key function of SWSPHN. This process includes literature review, data collection and analysis, stakeholder and community surveys, consultations and focus groups to identify any emerging needs. >
In line with that role, the forums aim to gain a range of perspectives on important health-related issues so funds and efforts can be directed towards addressing service gaps. They also help to attract and keep quality GPs, and other primary health professionals.
The four sets of forums held since May 2022 have attracted about 400 participants and addressed a range of key priorities across the region.
Each forum successfully promoted an exchange of ideas and helped to create meaningful conversations between attendees and SWSPHN staff. SWSPHN also conducted surveys to allow those who could not attend a face-to-face forum to share their insights.
The focus of the Local Health Forums is decided by the SWSPHN executive team, based on regional and strategic needs. Each event includes a dinner for participants and is run by a main facilitator. There is a presentation from an SWSPHN executive member, followed by a talk about the topic by a subject matter expert.
This is followed by a consultation session involving small groups of five or six participants who talk with each other to answer the six questions presented to them. SWSPHN staff are also there to guide and assist them.
CARE FINDER PROGRAM
The first of the Local Health Forums were held in May and June 2022 and highlighted the care finder program and the challenges older people face in accessing healthcare in South Western Sydney.
The forums offered attendees a chance to learn about the Commonwealth-funded aged care initiative aimed at connecting local seniors to appropriate services. They shared insights and perspectives which have guided the development of local, face-to-face supports to help older people navigate access to aged care services.
Suggestions from participants highlighted the importance of: GPs understanding and supporting the program; including access to bilingual staff and culturally appropriate services; collaborating with local councils, religious groups and other community organisations; and the integration of the care finder program with health, aged care and other systems.
CHRONIC DISEASE MANAGEMENT
In February and March 2023, Local Health Forums were held to discuss the barriers, enablers and opportunities around improving chronic disease management.
Through the forums, the community highlighted the need to make healthcare more affordable, support healthcare providers financially, and enhance public awareness and education about chronic diseases.
Specific areas like Bankstown and the Southern Highlands highlighted a particular demand for increased education. Campbelltown and Liverpool were more focused on improving access to care.
MENTAL HEALTH SERVICES
Local Health Forums focused on the barriers to accessing mental health services in August and September 2023. The forums were part of a bigger deep dive into mental health and suicide prevention being undertaken by SWSPHN.
Information shared during the forums helped to: identify and understand the mental health needs of the community; identify where existing services can be improved to better serve the community; and develop and implement future activities which will benefit the community.
SUPPORTING PRIMARY HEALTHCARE
The focus of the Local Health Forums in March and April 2024 was supporting primary healthcare.
Key priorities for further consideration which came out of the forums included: increasing support for primary care health professionals, including improving general practice support and referral pathways for allied health; supporting patients to access primary healthcare services
through educational communications campaigns and improving accessibility; and improving regional directories to provide a clear view of all services.
WHAT’S NEXT?
Forums currently being planned for August and September this year will focus on palliative care and the importance of advance care planning.
SWSPHN Chief Executive Officer, Dr Keith McDonald PhD, said the Local Health Forums explored service and health needs gaps in our community and were essential in better understanding how SWSPHN could ensure the delivery of quality healthcare to our community.
‘Each forum reinforces the importance of engaging and collaborating with our community to identify areas for improvement and develop solutions to help enhance healthcare services in our region,’ he said. ha
DAVID ATTWOOD
SKYE ABRAHAM
JO COCKWILL
KEITH DONOHOE
GRACE GARD
HEIDI HASSAN
VICTOR JOROH
NORA MOUBARAK
JOANNA OAKLEY
SHEILA PATEL
SUFI SALIEH
KELSEY SERENA
YING WONG
“A practice of co-research promotes the coproduction of knowledge and invites the varied perspectives of a diverse research team to add depth to the interpretation of data, while also assisting with the triangulation of research data.”
Consumers as co-researchers: democratising results
Consumer involvement in health and medical research is increasingly recognised as a vital collaboration for successful and impactful research. The influence that consumers with lived experience of cancer can have on the design, development and conduct of research projects is significant and is building a substantial evidence base. Additionally, there is a role for consumers to be meaningfully involved in the analysis of research results and the dissemination of findings. Consumers engaging in this fundamental aspect of the data collection and analysis process can be considered as coresearchers1. A practice of co-research promotes the co-production of knowledge and invites the varied perspectives of a diverse research team to add depth to the interpretation of data, while also assisting with the triangulation of research data.
A study looking at the experience of Arabicspeaking patients with cancer who communicate through an interpreter was piloted at a metropolitan hospital, led by a consumer-led research group (CLRG) and supported by the VCCC Alliance. It aimed to observe specific challenges for cancer patients who communicate through professional interpreters and their ability to communicate what they value with their healthcare professionals (HCPs). The CLRG was comprised of a group of nine consumers with lived experience of cancer, diverse in terms of age, gender, and CALD background. Following their development of the research question, the CLRG engaged a research team that refined the project and finalised the research protocol. An Arabic-speaking researcher was recruited to conduct the research at Western
Health, Melbourne. Seven in-depth semi-structured interviews were completed with HCPs, interpreters, and an Arabic-speaking patient who had engaged the interpreting service.
In addition to leading the development of the research question and design of the study, the CLRG can be viewed as co-researchers in this project, through their involvement in all aspects of the research process such as data collection and analysis. As co-researchers, the CLRG contributed a consumer voice to the development of the interview questions for patients, HCPs, and interpreters, and the interpretation and analysis of interview responses. Here, we outline our method of co-research, as well as the key impacts of coresearchers on the outcomes of the study.
Doing co-research: education and active participation
The CLRG worked in conjunction with the research team to develop the project methodology. Semistructured interviews were planned for interview targets of patients, HCPs and interpreters. The questions for these were developed through an iterative process of drafting and review, with input from the CLRG and research team. Analysis methodology included thematic analysis, a process in which interviews were read and subjected to a preliminary thematic coding by the research team, with the selected sections then presented to the CLRG for further interpretation/clarification. This process allowed for the most impactful involvement and insight of the CLRG as co-researchers without >
“Through discussion, key practical findings emerged from the narratives of interview participants, with valuable and considered input from the co-researchers.”
requiring every member of the large team to comb through the extensive interview data.
The CLRG’s involvement in the process of qualitative data analysis (inductive thematic analysis) was a staged process of education and participation. A member of the research team conducted an education session, in which the paradigm, rationale, and approach to qualitative research in this project was introduced to the CLRG. This study utilised a grounded-theory approach (ref), which allows research data to guide an interpretation framework and was endorsed by the CLRG as a method that prioritises participants’ responses as the driver of study outcomes. The CLRG were also educated in inductive thematic analysis techniques, involving close reading of interview transcripts with the aim to co-develop a consensus list of major themes with associated quotes. Educating co-researchers on qualitative research approaches and practices is a critical element of meaningful co-research as it empowers co-researchers to understand the strengths and weaknesses of different approaches and provides the opportunity for critical engagement with the research process and, consequently, the research outcomes.
Following initial thematic analysis, selected interview sections were analysed by the CLRG
to shape the final areas of greatest interest and impact for research output. The co-research process was particularly useful for interpreting and understanding the multifaceted and complex insights of patients, HCPs, and interpreters. Complex issues were considered, such as matching the dialect and gender of Arabic-speaking patients who use the interpreting service in oncology consultations. Through discussion, key practical findings emerged from the narratives of interview participants, with valuable and considered input from the co-researchers. The continuation of the co-research process in the dissemination of results, such as through the revision of publications in an iterative drafting process, is essential to both ensuring the quality and validity of published results and to closing the loop with co-researchers.
The activity of the CLRG as co-researchers in the design, collection, analysis, and dissemination of results in this consumer led project facilitated the production of meaningful study outcomes, shaped throughout by the consumer voice. ha
References:
1.Clark, AT., Ahmed, I., Metzger, S., Walker, E., & Wylie, R. Moving from co-design to co-research: engaging youth participants in guided qualitative inquiry. International Journal of Qualitative Methods. 2022; 21. https://doi.org/10.1177/16094069221084793
2.Lyndon, S., & Edwards, B. Beyond Listening: The value of coresearch in the co-construction of narratives. Qualitative Research. 2022; 22(4): 613-631. https://doi.org/10.1177/1468794121999600
DUNCAN BAULCH Victorian Hospitals’ Industrial Association, Workforce Manager
Why data is the engine to reform
We need robust, accessible and agile data to deliver workforce strategy and reform
Why?...
Access to data is a key enabler of workforce strategy and reform. The planning, delivery and evaluation of a workforce strategy must be fully informed. This is true, not just at a national or jurisdictional level, but at an organisational level also. More than that, we need to ensure our people managers have the right data and tools to that allow them to effectively make informed decisions. The cost of data deficits isn’t just financial, there’s a significant risk we will inhibit managers from maximising the potential of their most valuable resource; human capital.
The problem…
Workforce data is often complex and disconnected across multiple systems. This results in end users allocating an inordinate amount of time to find the answers they need. Complex analysis of data often works on a series of assumptions and limitations that leave the end user asking more questions than
they had to begin with. Furthermore, previous efforts to measure supply and demand have, in many cases, been ‘point in time’ and failed to adapt to shifts in government policy or external influences, such as global financial crisis and pandemics. This raises questions regarding the long-term accuracy of workforce forecasts if they are not sensitive to shifts in supply and demand over time.
When reflecting on my own personal journey as a clinician, manager and policy officer, I always endeavour to utilise workforce data to inform my work. Unfortunately, I‘m often frustrated with the lack of workforce data that allows me to justify my position or make informed decisions.
As a Unit Manager, I felt comfortable managing the members of my small team. I knew their ages, their skills and how much and how long they wanted to work. However, as I progressed into more senior roles there was a disconnect between unit level data and what was captured at an
organisational level. The challenge and disconnect associated with workforce data became even more apparent when working at a jurisdictional and national level.
Investing in workforce data…
In many instances those organisations that are making timely and informed decisions regarding workforce are those that have invested in systems that are intuitive to the end user and can extract data across a complex web of systems. Investing in workforce data is not just limited to purchasing Human Resource Management Systems (HRMS). Health services and governments need to ensure that people managers are invested in getting the best out of their systems. People managers need to commit to understanding the potential of a HRMS, and invest time and energy to ensure they maximise system outputs. However, a new HRMS alone is not the answer to resolving your workforce data challenges. It also takes leadership and ownership of the problem, and the solution.
The way forward…
Making do with what workforce data you have, or being content with the status quo, is not an approach I’m comfortable with. Work must continue across organisations, government, regulators and education providers to develop timely, high quality and accessible data. Not just for workforce planners and analysts, but also for anyone who is responsible for managing human resources.
While workforce strategies have elements that seek to improve workforce data capabilities and capacity, it could be argued that resolving gaps in workforce data should occur prior to embarking on developing an all-encompassing strategy. How can we be sure that we are developing actions that will effectively address workforce challenges if we still have questions around workforce data? When it comes to clinical decision making, it goes without saying that decisions must be evidence based. Why would we accept a lesser standard for workforce strategy?
That’s not to say that the recent focus on developing workforce strategy by governments, at both a jurisdictional and national level, should not be embraced and seen as a positive step to building a sustainable health care workforce. Extensive high level workforce modelling is being undertaken to inform jurisdictional and national workforce strategies, but our ability to measure the success of these initiatives may be limited without consistent workforce data solutions across our health care system.
While we all at times continue to feel frustrated at the apparent gaps in workforce data, we should not lose hope. There is a growing recognition that workforce data is critical to operational and strategic decision making. This recognition was in part sparked during the pandemic when gaps in workforce data were exposed, and in addition growing workforce shortages and maldistribution make it difficult to not continue our search for the solutions to our data woes. ha
Measuring
the impact of consumer engagement in research: a consumer perspective
JO COCKWILL Consumer Advocate
JO OAKLEY
Consumer Coordinator, Gibbs Lab (personalised oncology division, WEHI)
The reasons why patients or carers become consumer advocates are numerous and varied. However, at some point in any conversation about motivation, consumers will invariably say they want to make a difference for others. Health consumers want to use their own life experience to contribute to higher quality health services and ultimately better health outcomes for patients. Passion and equality of opportunity are the basic premises for their motivation.
for personal and professional growth through meaningful feedback, based on co-designed impact measures.
“There are a variety of different approaches and tools to capture the experience and impact of involving consumers in health and medical research.”
The reality for most health consumers is that they will generously give their time, energy and passion to a research project without really knowing what the impact of their involvement will mean long term or sometimes even in the immediate future. Measuring impact is very challenging for both researchers and consumers. It can be complex, time consuming, and it requires careful and informed pre and post planning. However, to continuously improve the quality of consumer participation it is important to build evidence of its value and to provide consumers with opportunities
There is now evidence that the consumer/ researcher partnership can play a significant part in fostering person-centred approaches to health care and more relevant medical research which is responsive to the needs of the community. Consumers want and need to know they are making a difference to both the engagement process and the planned project objectives of the project in which they are participants.
There are a variety of different approaches and tools to capture the experience and impact of involving consumers in health and medical research. Questions of why, how, when, and for whom research teams should attempt to capture this information, and, whether this information can be captured by a standardised tool at all, are important but not easy to answer. Dimensions such as scientific rigour, the consumer perspective, comprehensiveness, and usability are prioritised when considering the success of an evaluation tool1. Questionnaires and surveys are emerging as a favoured impact evaluation method and many different organisations have produced their own version2,3,4,5. Tools such as these ranked most highly in a recent review of available tools by the Australian Health Research Alliance6 (AHRA), where tools were evaluated by both consumers and researchers. Additionally, there are cases to be made for short-form evaluation tools such as reporting checklists7 and for more in-depth reflective methods of evaluation that attempt to capture a holistic picture of the impact of consumer involvement on a research team and >
a research project. These include journal entries, interviews8, and reflective writing9. In the context of these existing tools, and the complexity of contemporary consumer involvement in medical research, evaluating its impact remains urgent, essential, and most challenging.
Whilst all these tools and many others, have merits and should be individually valued for their appropriateness for the task in hand, the importance of consumer involvement in the evaluation process is the vital component. The choice of tools and evaluation methodology needs to be planned within a consumer/researcher team to ensure relevance, compliance and accountability in the process. Conducting an evaluation in partnership also develops understanding amongst consumers of what impact measurement is and why it is important. Impact itself is a challenging concept. Unlike analysis of the research process or a study with pre-determined outcomes, impact measurement is less tangible and usually requires some value judgement8,10. Consumers
“Though challenging, meaningful co-designed evaluation of the impact of consumer involvement in a research team can and should be done.”
Evaluation is a learning process both in its planning and implementation and can offer insights which influence future research or practice/ system change. Measurement of the impact of consumer engagement is important not only as a concept and for the learning it offers but also the meaningful partnership opportunities it creates. Though challenging, meaningful co-designed evaluation of the impact of consumer involvement in a research team can and should be done. Ultimately, such feedback will mean an increased sense of fulfillment for consumers and, therefore, an increased likelihood of continued engagement. Consumers need to know that their contributions are relevant and above all, that their involvement is integral to a research team focussed on improving health outcomes for all. ha
References:
1.Boivin A, L’Espérance A, Gauvin FP, Dumez V, Macaulay AC, Lehoux P, & Abelson J. Patient and public engagement in research and health system decision making: A systematic review of evaluation tools. Health Expectations. 2018:21(6): 1075-1084. doi. 10.1111/hex.12804
2.Australian Clinical Trials Alliance (ACTA). Evaluating Involvement. Accessed June 2024. https://involvementtoolkit.clinicaltrialsalliance. org.au/toolkit/evaluating/evaluating-involvement/
3.Blackburn S, McLachlan S, Jowett S, Kinghom P, Gill, P, et al. The extent, quality and impact of patient and public involvement in primary care research: a mixed methods study. Research Involvement and Engagement. 2018:4(16). doi. 10.1186/s40900-018-0100-8
4.McMaster University. Public and Patient Engagement Evaluation Tool Version 2. 2018. Accessed June 2024. https://ppe.mcmaster.ca/ our-products/public-patient-engagement-evaluation-tool
5.Popay J, Collins M, with the PiiAF Study Group (Eds.). The Public Involvement Impact Assessment Framework (PiiAF) Guidance. Universities of Lancaster, Liverpool and Exeter. 2014.
6.Australian Health Research Alliance (AHRA). Measuring the Impact of Consumer and Community Involvement in Health Research: An assessment of available tools. 2021. Accessed June 2024. https:// ahra.org.au/wp-content/uploads/2021/10/AHRA_CCI_Measuring_ Impact_web.pdf
7.Staniszewska S, Brett J, Simera I, Seers K, Mockford C, et al. GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ, 2017:358: j3453. doi: 10.1136/ bmj.j3453
and community members may offer different interpretations of what is of value. It is essential that community views are heard as community members are usually the recipients of health service change or research outcomes.
8.Staley K, & Barron D. Learning as an outcome of involvement in research; what are the implications for practice, reporting and evaluation? Research Involvement and Engagement. 2019:5(14). doi: 10.1186/s40900-019-0147-1.
9.Gibbs G. Learning by Doing: a guide to teaching and learning methods. Further Education Unit. Oxford Polytechnic: Oxford. 1988. 10.Purtell RA, & Wyat KM. Measuring something real and useful in consumer involvement in health and social care research. International journal of Consumer Studies. 2011:35(6):605-608. doi: 10.1111/j.1470-6431.2011.01015.x
•Recognise
•Respond
•Refer
Recognising the cost of unpaid care
Whether it’s looking after children, elderly family members or your neighbour, we know that many of you are actively providing unpaid care.
This unpaid care may be in addition to your paid job. Or perhaps your caregiving responsibilities have meant you’ve needed to reduce your hours at work — which may also be impacting your finances and even how much money you’ll have at retirement.
At HESTA, we believe in using our collective voice to help address inequities impacting our members and those we see falling behind. That’s why we partnered with the McKell Institute to conduct research to better understand how unpaid responsibilities are affecting HESTA members.
The impact of unpaid care on our members
According to our survey of HESTA members*, an average of 28 hours a week is spent providing unpaid care. That’s the equivalent of 3.5 average working days.
The data also shows this unpaid care is more likely to be undertaken by women, with 88 per
cent of caregiver respondents being female. 66 per cent of respondents under 50 not in full-time employment said they would work more paid hours if they didn’t have unpaid caring duties — which in turn would boost their income and superannuation.
The most trying aspect of providing unpaid care, noted by 92 per cent of respondents, was the impact on their mental health of juggling unpaid care with paid care. 51 per cent reported they don’t share the responsibility of their caring duties with anyone. This means many carry the burden of unpaid care — and the personal or financial consequences of that care — alone.
Measuring unpaid care
It’s clear from our research that many of you who are working while providing unpaid care, may be facing significant financial strain and noticing an impact on your mental health, family, and community wellbeing.
“I
want a superfund that’san expertat managing money.”
VindhyaMendis, HESTAmember
That’s why we recognise the importance of measuring unpaid care, and we welcome the Federal Government’s decision to increase the frequency of time-use surveys to capture national data on unpaid care work.
for over 430,000 services close to you, including financial assistance and mental health counselling.
*Research studies conducted among a representative sample of HESTA members from November 2022 to September 2023. Find out more
awarded a 15 year platinum performance rating from Australia’s mostrespectedsuperresearchcompany,SuperRatings.
we’re not only one of the largest super funds in the country, one of the best.
Because formally measuring the role of unpaid care work in Australia can help to recognise its impact on our members’ financial wellbeing, economic contribution, and help improve equity in retirement savings.
More on this topic, and the McKell Institute’s recommendations, can be found in the ‘Our place in time: Making unpaid work count’ report.
If this resonates with you, HESTA is proud to partner with Infoxchange, the not-for-profit behind ‘Ask Izzy’: a service that helps Australians find and access local support services. You can search
Issued by H.E.S.T. Australia Ltd ABN 66 0 06 818 695 A FSL 235249, the Trustee of HESTA ABN 64 971 749 321. This information is of a general nature. It does not take into account your objectives, financial situation or specific needs so you should look at your own financial position and requirements before making a decision. You may wish to consult an adviser when doing this. The target market determination for HESTA products can be found at hesta.com.au/ TMD. Before making a decision about HESTA products you should read the relevant Product Disclosure Statement (call 1800 813 327 or visit hesta.com.au/pds for a copy), and consider any relevant risks (visit hesta.com.au/understandingrisk).
Community voices shaping Adelaide PHN
“Together,
our Councils play a crucial role in shaping Adelaide PHN’s programs, services, and activities by providing deep insights into community needs and opportunities.”
Adelaide PHN is committed to honest and genuine community-wide involvement, consultation and codesign activities. Our advisory structure comprises the Clinical Council (CC), Community Advisory Council (CAC), and Aboriginal Community Advisory Council (ACAC). The CC is composed of General Practitioners and Allied Health professionals, while the CAC and ACAC include community members with diverse lived experiences across various health priority areas.
Together, our Councils play a crucial role in shaping Adelaide PHN’s programs, services, and activities by providing deep insights into community needs and opportunities. This engagement is facilitated through community consultations, which are vital for comprehending the community’s requirements.
Kitchen Table Discussions
Kitchen Table Discussions are a consumer engagement tool that enables Adelaide PHN to hear community views on varied health topics.
Since 2022, Adelaide PHN has utilised Kitchen Table Discussions to hear the voices of consumers
and carers who do not generally participate in any formal consultations.
Since introducing Kitchen Table Discussions, twenty kitchen tables with 260 participants have taken place and covered topics such as after-hours access, aged care, population health, workforce, early intervention, suicide, eating disorders, alcohol and other drugs.
The strength of Kitchen Table Discussions is that they are facilitated by members of our Community Advisory Councils who are supported by Adelaide PHN to become community hosts. Kitchen Tables hosts are provided opportunity to lead conversations with their own community in a safe, friendly and supportive environment.
Importance of the Discussions
• Enables access to a broad and diverse crosssection of community
• Community members feel their voice is heard, and their views are valued.
• Increases consumer knowledge and awareness about the services, as well as helps support their health literacy.
How Feedback informs Planning and Design
Adelaide PHN then engages members of the Adelaide PHN Board with members from across our Councils to undertake priority setting or prioritisation to ensure our process is one that is balanced and takes account of the views of different stakeholders, is transparent, fair and reasonable.
Adelaide PHN seeks input from members of our Councils and people with Lived Experience to co-design and co-create services and programs to address local needs using locally informed, placebased frameworks for delivering models of care. Our work helps people access safe, equitable and timely health care where it’s most needed. Employing various methods, such as Kitchen Tables, Yarning Circles, surveys, interviews,
workshops, and focus groups, ensures genuine and meaningful community participation in consultations and co-design processes.
Adelaide PHN values community input into our processes, considering it fundamental to our strategic intent to deliver improved health outcomes for vulnerable people. The involvement of our Advisory Councils provides assurance that our initiatives are reflective of and responsive to the community’s needs, creating a healthier Adelaide. ha
Electronic communications must be available for voluntary assisted dying
The following joint statement was made on behalf of various Australian healthcare organisations, including the Australian Healthcare and Hospitals Association, coordinated by Go Gentle Australia.
Electronic communication is essential for highquality and safe health care. However, the Cth Criminal Code’s restriction on how health professionals communicate about voluntary assisted dying (VAD) is causing disruptions and delays in care, and limiting health professionals’ ability to do their jobs.
The prohibition of electronic communication for VAD care disadvantages people who are unable to travel for face-to-face consultations due to the complexity of their medical condition or because they live in a rural or remote area. Essential communications between health professionals are also negatively impacted.
The use of electronic communications in health care, such as telehealth and video conference, is governed by specific guidance from the Australian Health Practitioner Regulation Agency (Ahpra) and the Medical Board of Australia. Health professionals must also follow their professional bodies’ Code of Conduct at all times, irrespective of the type of care (e.g. Codes from Medical Board of Australia, Ahpra’s Shared Code of Conduct and the Nursing and Midwifery Board’s Code).
It should be for health professionals and their patients to decide if electronic communications
are an appropriate alternative to in-person care.
In May 2024, state, territory and federal branches of the Australian Medical Association (AMA) wrote to the Australian government to urge reform.
The Cth Criminal Code provisions were never intended to impact VAD. All state laws, except Victoria, explicitly distinguish VAD from suicide. Australian suicide prevention organisations agree that VAD should not be described as suicide because conflating the two can be damaging. Criminal Code provisions should not apply.
Background
In 2005, the Criminal Code Act 1995 (Cth) was amended to, in the words of the then-Attorney General, ‘protect vulnerable individuals from people who use the internet with destructive intent to counsel or incite others to take their own lives’. The intent was to restrict pro-suicide chatrooms and materials being distributed online.
Sections 474.29A and 474.29B of the Commonwealth Criminal Code (contained in Schedule 1 of the Act) made it an offence to use a ‘carriage service’ to publish or distribute material that counsels or incites a person to suicide. Unfortunately, state voluntary assisted dying (VAD) laws are caught up in the same prohibition
— despite leading suicide prevention organisations releasing a joint statement distinguishing VAD and suicide, and all state VAD laws (except Victoria) explicitly stating the same.
In practice, the prohibition means no conversations about the delivery or administration of the VAD substance can take place over telephone, video conference, email, fax or other forms of electronic communication. This disrupts and delays the delivery of high-quality, timely and accessible VAD care.
There is uncertainty about the extent to which the provisions apply to VAD communication, with a high level of concern that it may affect all conversations or information shared about VAD that uses a carriage service.
Some examples of the impact include:
• Even a person who is frail, suffering and in pain must attend all appointments in-person, or wait for a health professional to visit them at home. Sadly, some people have died waiting for at-home assessment.
• People in regional and remote areas face additional barriers to accessing VAD care as travel is required for all steps and stages of the VAD process.
• No follow-up information or support can be provided beyond in-person appointments (e.g. a pharmacist who delivers VAD medication to a person’s home can only provide follow-up information by another visit).
• Prescriptions for the VAD substance must be hand-delivered to pharmacies.
• Doctors, nurses, pharmacists and allied health professionals making arrangements to support the administration of the VAD substance break the law if they email, fax, call or text each other. Person centred communication is essential for the delivery of high-quality and safe health care.
Health professionals and patients are best placed to decide which communication methods are appropriate, in line with Ahpra telehealth guidance and in accordance with their professional body’s Code of Conduct (e.g. Medical Board of Australia’s Code of Conduct, Ahpra’s Shared Code of Conduct, Ahpra’s Nursing and Midwifery Board’s Code of Conduct).
Legal restrictions on communication methods do not apply to any other area of health care, and limit the ability of health professionals to do their jobs and provide the best care. ha
Organisations included in this joint statement:
• Pharmaceutical Society of Australia
• Australian Medical Association QLD
• Consumers Health Forum of Australia
• Australian Healthcare and Hospitals Association
• Australian Nursing & Midwifery Federation
• Peter MacCallum Cancer Centre
• Society of Hospital Pharmacists Australia
• Clinical Oncology Society of Australia
• Older Persons Advocacy Network
• Australian College of Nurse Practitioners
• Australian Primary Health Care Nurses Association
• Australian Lawyers Alliance
• Health Care Consumers
• Australian Association of Social Workers
• Australian Medical Students’ Association
• Australian Association of Psychologists
• Voluntary Assisted Dying Australia & NZ
• Public Health Association
Become an AHHA member
Help make a difference on health policy, share innovative ideas and get support on issues that matter to you – join the AHHA.
The Australian Healthcare and Hospitals Association (AHHA) is the ‘voice of public healthcare’. We have been Australia’s independent peak body for public and not-forprofit hospitals and healthcare for over 70 years.
Our vision is a healthy Australia, supported by the best possible healthcare system. AHHA works by bringing perspectives from across the healthcare system together to advocate for effective, accessible, equitable and sustainable healthcare focused on quality outcomes to benefit the whole community.
We build networks, we share ideas, we advocate and we consult. Our advocacy and thought leadership is backed by high quality research, events and courses, consultancy services and our publications. AHHA is committed to working with all stakeholders from
across the health sector and membership is open to any individual or organisation whose aims or activities are connected with one or more of the following:
• the provision of publiclyfunded hospital or healthcare services
• the improvement of healthcare
• healthcare education or research
• the supply of goods and services to publicly-funded hospitals or healthcare services.
Membership benefits include:
• capacity to influence health policy
• a voice on national advisory and reference groups
• an avenue to key stakeholders including governments, bureaucracies, media, likeminded organisations and other thought leaders in the health sector
• access to and participation in research through the Deeble Institute for Health Policy Research
• access to networking opportunities, including quality events
• access to education and training services
• access to affordable and credible consultancy services through JustHealth Consultants
• access to publications and sector updates, including: -Australian Health Review
-The Health Advocate -Healthcare in Brief
-Evidence Briefs and Issues Briefs.
To learn about how we can support your organisation to be a more effective, innovative and sustainable part of the Australian health system, talk to us or visit ahha.asn.au/membership.
More about the AHHA
AHHA Board
The AHHA Board has overall responsibility for governance including the strategic direction and operational efficiency of the organisation.
Hon Jillian Skinner Chair
Dr Michael Brydon University of Notre Dame
Ms Yasmin King SkillsIQ
Ms Susan McKee Dental Health Services Victoria
Dr Kim Webber cohealth
Mr Michael Culhane ACT Health Directorate
Mr Anthony Schembri AM Independently Appointed Board Director
Mr Mike Bosel
Brisbane South Primary Health Network
Dr Tina Janamian Australian General Practice Accreditation Limited
AHHA National Council
The AHHA National Council oversees our policy development program. The full list of Council members can be found at: ahha.asn.au/governance
Secretariat
Ms Kylie Woolcock Chief Executive
A/Prof Rebecca Haddock Executive Director Knowledge Exchange
Ms Ellen Davies Communications Manager
Mr Kevin Chacko Research and Policy Officer
Ms Suzzie Harvey Director, Business Development
Ms Emma Hoban Manager, Australian Centre for Value-Based Health Care
Ms Angela Wicks Policy Director
Ms Emma Walsh Policy Officer
Mr Gregory Mowle Finance and Operations Manager
AHHA sponsors
The AHHA is grateful for the support of HESTA Super Fund.
Other organisations support the AHHA with Corporate, Academic, and Associate Membership and via project and program support.
Contact details
AHHA Office
Unit 8, 2 Phipps Close Deakin ACT 2600
Postal address PO Box 78
Deakin West ACT 2600
Membership enquiries
T: 02 6162 0780
F: 02 6162 0779
E: admin@ahha.asn.au
W: www.ahha.asn.au
The Health Advocate, general media and advertising enquiries
Ellen Davies
T: 02 6180 2826
E: communications@ahha.asn.au
The views expressed in The Health Advocate are those of the authors and do not necessarily reflect the views of the Australian Healthcare and Hospitals Association. ISSN 2200-8632
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