Introduction by Croakey: The critical role that consumers play in health research, what best practice looks like, and how more consumers can become involved were topics discussed at a webinar hosted last week by the Consumers Health Forum of Australia, the latest in its series of #CHFTalks events.
The 90-minute panel discussion, which you can watch here, featured powerful personal stories of advocacy, representation and research from three longstanding expert consumer representatives, who have worked in cancer and HIV/AIDS research over decades, each powered by the “burning need and desire” to respond to difficult health issues for themselves and loved ones.
They offered many practical tips for consumers wanting to get involved and for researchers seeking to value and respect consumer perspectives, reports Marie McInerney for the Croakey Conference News Service.
Marie McInerney writes:
Like many of her peers, Melissa Le Mesurier became a consumer advocate and patient representative in research as a result of health issues in her family.
Twenty-five years ago, her son was diagnosed with cystic fibrosis as a young baby.
“As any parent would, I got heavily invested in ‘was there a cure for this damn thing?’,” she told a Consumers Health Forum webinar last week, titled: Consumers in research: What’s our role ?
In those early years, Le Mesurier joined with other parents and clinicians in Melbourne to set up the Royal Children’s Hospital Cystic Fibrosis Research Trust, which has since raised more than $3 million for research and funded about 20 clinical fellows.
But, Le Mesurier said, she didn’t really feel like a formal consumer representative until seven years ago, when she was diagnosed with bladder cancer – “a type of cancer that doesn’t often have good outcomes, and it’s a bit unsexy, it doesn’t get much of the research dollar, so I had a very vested interest there to learn what was the latest”.
She has now reached “the pointy end of consumer advocacy” with her appointment last year as chair of the Cancer Consumer Advisory Committee for the Victorian Comprehensive Cancer Centre Alliance (VCCC), which sets the research agenda for the VCCC and models best practice consumer leadership, she said.
She is also a member of Australian and New Zealand Urological and Prostate Cancer Trials Group (ANZUP) consumer advisory panel, and a Board Member of Lung Foundation Australia.
Le Mesurier talked about the possibilities and pathways for involvement in research: from quite passive roles “when you’re starting your journey and you want to find out more information” through to telling your story, true partnership with clinicians and researchers and, “at the furthest stage”, as she has now reached, to become a leader of consumer-led research, including as a Chief Investigator.
Frightened and angry
Darryl O’Donnell, Adjunct Professor with the Faculty of Medicine and Kirby Institute at the University of NSW, said his journey into consumer research reflected that of Le Mesurier’s: “that burning need and desire to understand, to make sense of what’s happening in our lives when we or one of our loved ones is hit by a serious health condition”.
O’Donnell told the webinar that he came out as a gay man in 1990 “to a community that was in crisis”. The HIV epidemic in Australia was at its peak, with gay men, often young, being diagnosed with HIV/AIDS in devastating numbers.
“We were frightened and angry and so coming together, mobilising to educate others, to provide care, to advocate, provided us with a way of doing something to ease the awfulness of what was happening,” he said, sharing photos of protests staged in the early days of the AIDS response.
Those protests sent the message: “We need research, not hysteria, and implicit within that, we need the rationality, we need the evidence that comes from research, not moralising and panic.”
As former CEO of Health Equity Matters, O’Donnell helped lead Australia’s HIV response over the past decade that has put Australia on track to end HIV transmission. Earlier at the Mental Health Commission of NSW, he established a new public sector agency, driving major mental health reforms.
Now a consultant, he is currently chairing the review of the CHF and NHMRC National Statement on Consumer and Community Involvement in Health and Medical Research.
Research was and remains the pathway through the HIV epidemic, O’Donnell said. “We needed a test for HIV, we needed drugs to treat HIV, and today, 40 plus years later, we need a cure,” he said.
O’Donnell reflected on how the early working relationship between communities and researchers in HIV “started with the needs and questions” of a community that was caught up in catastrophe.
In particular, he said, in the mid 1980s activists at the AIDS Council of NSW got in touch with Sydney researcher Sue Kippax, “one of the heroes of Australia’s HIV response” and now an Emeritus Professor, to ask for help in gathering data to understand how gay men were responding to community messages about safe sex.
Together, they designed a study, the Social Aspects of the Prevention of AIDS 1986-87, which involved community members from design to dissemination of findings. It was the first of its kind and became a model for how community and researchers would work together in Australia’s HIV response, he said.
Through that research, the community gained a better understanding of HIV, one that they couldn’t have obtained without the support of those researchers, he said. In turn, the researchers were able to recruit participants into their study and gain a better understanding of gay men than they could have without the support of community.
O’Donnell said there have been many challenging moments over the years, including the publication at times of HIV research that was “hugely stigmatising for communities”, and which put partnership to the test.
He emphasised the importance (and challenges) of research/community partnerships, two way relationships with trust and respect at their heart, and the need to “stay true to yourself” without bunkering down in oppositional mode, offering the insight: “there is no faster way to a researcher’s heart than genuine curiosity”.
Perspective and motivation
Brisbane-based Leonie Young is also an accidental researcher, saying it was “never on my radar” to become a patient advocate after being diagnosed with breast cancer in the late 1980s.
“I just started asking questions…[on issues that] I was really not finding the answers to: ‘What was going to happen to me as a younger woman, being menopausal so early? What was going to happen to me in my old age?’,” she told the webinar.
Young’s diagnosis and treatment – a mastectomy, a full auxiliary lymph node clearance, and six months of chemotherapy – saw her become a consumer advocate at a time when support organisations like the Breast Cancer Support Network were only just beginning.
But, like her fellow panelists, she has gone on to make major contributions, including globally as president of Reach to Recovery International. She is, with Le Mesurier, a member of the ANZUP’s consumer advisory panel, and is also Peer Support Coordinator for the Wesley Hospital Choices Cancer Support Centre, and long-term member and chair of the Breast Cancer Trials Consumer Advisory Panel.
That latter role – “a wonderful grounding in consumer advocacy and research” – most influenced her interest in research, she said.
“I learned the importance of training and education and how to be part of a team, how to collaborate, how to manage when I felt out of my depth, which was really, really important,” she said.
People with lived experience can bring a unique perspective of their diagnosis and experience, as well as a wealth of diversity, knowledge and capabilities, she said.
“Above all they bring a motivation for improving outcomes and the ability to ground research in that lived reality,” she added.
Having learnt “lots of lessons” over 30 years, Young shared key insights:
Advocacy comes in different forms: Consumers can be engaged in a variety of ways in many organisations working to improve outcomes for people in health systems. While this is a wonderful advance, it does make the space “quite complex and complicated”.
One size does not fix all: “It’s about finding your niche and understanding your capabilities and strengths and weaknesses – just because someone has had a certain health experience doesn’t make them an expert in every aspect of work in that area.” People learn through experience and education, but people who are newly diagnosed “can provide invaluable feedback around so many aspects of the treatment trajectory that perhaps those of us who are further down the track cannot’, she said.
My voice matters, and my story is valid: Young recalled sitting on committees as a consumer representative many years ago, when the ‘feedback from consumers’ item “was at the bottom of the agenda and, most often, the meeting would run over time, and we’d never get to that.” Now, she said, consumer reports and feedback are usually a standing item that is “usually at the top of the agenda”.
“We are experts by experience, and our voices are very, very important,” she said, and recommended: From passengers to co-pilots: Patient roles expand.
Other practical tips, insights and advice
Opening the webinar conversation, moderator and the CEO of CHF, Dr Elizabeth Deveny, gave “real world examples” of consumer-led research:
- Research led with a citizen’s jury on artificial intelligence (AI) in healthcare (which featured in an earlier #CHFTalks webinar), with recommendations now being implemented by the NSW Government.
- Australian Clinical Trials Alliance’s (ACTA) working groups and the network of NHMRC Advanced Translation Centres that work to understand best practices around consumer engagement in medical research and clinical trials.
- The Royal Eye and Ear Hospital in Melbourne, which partners with consumers in research design, planning and training on ways to improve eye and ear hospital services.
- Australia’s Health Panel, convened by the CHF, which is dedicated to collecting the views of Australians on a variety of healthcare topics to inform submissions and other policy work.
Deveny noted shortcomings, however, including that CHF is not funded for research. “We don’t get any money to build your capacity or to advocate on behalf of consumer research in Australia,” she said.
Strong partnership
The panelists all agreed they had seen consumer input make a huge difference in research, from shaping questions and language, to making trial processes better for research participants, through to better translating research into policy and services.
They shared practical tips for those wanting to be involved or strengthen capacity for consumers in research.
In the HIV research world, O’Donnell said consumers and community “don’t take partnership ever for granted”, seeing it as an active and continuous process, “creating a set of relationships through trust and respect and mutual recognition of what each other brings”.
Meaningful engagement
Young said the sooner consumers are engaged in the whole process, the better, though it still doesn’t always happen that way as consumers too often are asked for input at the last minute.
It should also be respectful and continuing, she said. Consumers can “put a lot of time and effort into giving constructive and meaningful feedback” and then never hear from the researchers again.
What’s needed is to be thanked for your input, and told what’s happened to the application/grant/project, she said.
Avoid tokenism
“If you’re a researcher these days and you’re not taking consumer and community involvement seriously, you’re really putting yourself in jeopardy in terms of your ability to secure research funding from entities such as the NHMRC,” O’Donnell said.
“Because consumer and community involvement in research is really considered increasingly not a ‘good to have’, not a ‘nice add on’, but actually an essential part of demonstrating good research practices.”
Dealing with doubt
Young said people question the expertise of consumer researchers “all the time”, and consumers would benefit from more support and training to build capacity and expertise.
She is upfront when asked about something technical that she doesn’t know: “I just very honestly say that’s something I can’t comment on, I don’t pretend I know about it”. At the next opportunity she might seek someone out to find out more about it, to have “collaboration around learning”.
But in many cases, the lay perspective is what’s important, she said, advising that it’s best to not be confrontational, to be part of the team, and about “picking your battles”.
“Sometimes you’ve got to think: ‘what’s more important, is it my relationship here, is it still being part of the team and having my seat at the table, and finding another way to make this happen?’”
Le Mesurier said she has learned so much at the VCCC from the other consumers. “I chair the meetings, they actually add the gold, and at no time do I feel my knowledge is more or less worthy than anybody else’s,” she said.
“It doesn’t matter whether they’ve got 17 PhDs and they’re a professor or they’re a person who’s simply suffering from a disease and wants to help advance the cause.”
For O’Donnell, it is actually important that consumers don’t try to “be like researchers”, to understand all of the technical science.
“When we try and behave like researchers…we’re actually leaving our own space, which is as consumers, as advocates, as lived experience.”
Building capacity
Speaking about growing the ranks of consumers in research, O’Donnell said privilege was likely a factor that needed to be considered.
“If you’ve got kids, if you’re working two jobs, if you’re trying to hold down work and study, those sorts of options might not be available,” he said, urging already active consumers to advocate on remuneration issues for those who may be left out.
Le Mesurier also urged wider capacity. “People are scared maybe at the start that they can’t contribute valuably, but, at the end, it becomes the opposite problem,” she said.
“When you are well known, you get tapped on the shoulder for many, many things, so the further we can share the load and bring diverse perspectives into research, whether they’re actually participating as a patient or representing consumers as a patient advocate or consumer representative, the better. “
Register here to join the next #CHFtalks webinar, on understanding vaping reforms.
Further reading
Public Health Research & Practice (2024): Consumer and community involvement in preventive health: current insights and considerations for future best practice
Bookmark this link to cover Croakey Conference News Service coverage of the #CHFtalks webinar series.
