Marie McInerney writes:
The inaugural World Indigenous Cancer Conference was a rare opportunity for Elders and Indigenous delegates from across the globe to share diverse experiences of cancer, as well as their work in research, policy, practice and communities.
While experiences differ across Indigenous communities, there was a unified call for better and consistent data, more specialist Indigenous health care workers, better cultural understanding and practice in health settings, and improved engagement with communities. There was also much interest in Indigenous ‘navigators’, like the Native Sisters in the United States.
Below are final reports on presentations, as well as feedback from some participants on their conference highlights.
You will also find a selection of conference tweets (see the final analytics at the end of the post – with more than 10.5 million Twitter impressions and 600 participants on Twitter).
“Discrimination is literally killing Indigenous and other disadvantaged minorities around the world and we now have global data documenting that.”
As Croakey previously reported, Harvard Public Health Professor David R Williams talked about the impact of implicit bias and institutional racism in a workshop ahead of the conference.
In his plenary address, he looked at the broader impact of race and racism on health, documenting how racism creates conditions of life that can lead to racial and ethnic differences in cancer, as well as other diseases.
This can be seen most obviously in the environments in which many minority groups live: the segregation of black communities in the US and the forced removal of Indigenous populations across the globe, he said.
“Where you live matters profoundly for your health,” he said. “Your postal code is a more powerful predictor of your health than your genetic code.”
Williams highlighted one study that showed heart failure before the age of 50 was 20 times more common in blacks than whites in the US, and said there is enormous scientific interest in evidence of accelerated ageing of black Americans “at the cellular level”.
Research had found higher rates of breast cancer among black women aged under 40 in the US, West Africa, United Kingdom and the Caribbean. “Could it be that black women in different contexts are exposed to very similar adverse conditions that drive the differences we see?”
While social economic status plays a role, Williams said evidence is growing that there is “an added burden of race”, which has been explored most compellingly by US Public Health Professor and researcher Arline T. Geronimus as “biological weathering“.
“We are documenting now that repeated exposure to psychological, social, physical and chemical stresses in work and living environments and the greater clustering of these stressors are literally biologically weathering our populations.”
And, he said, there are more signs of long-term and intergenerational effect. Research had shown that a few stressful experiences in the lives of adults did not predict cancer risk; however, traumatic earlier experiences – such as abuse as a child by someone close, the death of a mother, or chronic depression while growing up – are predictive of cancer risk.
“There is growing evidence that early life exposures shape health profoundly,” he said.
In good news, he highlighted a state-wide cancer control program in the US state of Delaware that over less than ten years eliminated screening disparities, equalised incidence rates, and nearly closed mortality rate gaps.
The keys? Special outreach efforts for minority populations and the provision of nurse navigators.
Williams concluded: “Inequalities in health are not acts of God, they are not random effects, they reflect the successful implementation of social policies. Improving health requires political will to make a commitment to new strategies that will dismantle policies that create inequality and that will provide opportunities for health for all.”
Watch an interview with Professor David R Williams.
Way beyond individual choices
“If something is repeated enough, it goes from being information to evidence. Our stories are not just narrative, they’re evidence.”
Dr Angeline Letendre from the Alberta Cancer Prevention Legacy Fund in Canada also talked about the physical, social and psychological environments in which Indigenous peoples live, and yet how they are still blamed for not making the “right” personal lifestyle choices.
“There’s always that element of choice, always of blame…when you’re talking about modifiable risk factors, you need to understand what are the contexts for Indigenous people.
What does it mean for an Indigenous person to be physically active? Stress is not really included as a modifiable risk factor for cancer (so how do we) think about accumulated stress/trauma in Indigenous communities?
The WHO (World Health Organisation) calls access the number one determinant of health for Indigenous people. It’s also about access to clean water, safe community, not just to health care.
People are really suffering in our communities, many times cancer is just one issue they’re dealing with. If you don’t feel safe in a community, you’re not going to be out there being physically active. I don’t know if I’ve ever seen a Reserve with sidewalks. We need to be more inventive.
We need multiple strategies, programs and plans. One thing is not going to work.
If we don’t do work or develop programs that are meeting (community) needs and that they’ve been involved in developing, we are probably not going to have any more success than programs have in the past.
“We can talk about trauma-informed care all we want, but if we don’t have a sense of where some of that trauma originates, it’s not making sense.”
Her presentation stood in marked contrast to the messaging from Cancer Australia’s new Cancer Lifestyle Check, which has been critiqued for failing to address the social determinants of health.
Best or worst case scenarios?
“This is a black space, this is an Indigenous space…”
Romlie Mokak, CEO of the Lowitja Institute, told the closing plenary about a collaborative project the research organisation had undertaken in 2013: ‘The shape of things to come: visions for the future of Aboriginal and Torres Strait Islander health research’.
It outlined two possible scenarios for 2030: best and worst case.
Mokak asked Australian delegates to consider “how we are travelling now”, in a political environment that has seen cuts to Indigenous health funding, a loss of Indigenous organisations, the mainstreaming and privatisation of health, and a focus on acute care and away from primary care and prevention.
He also talked about the role of Indigenous-led research organisations like the Lowitja Institute.
“Part of this is about the creation of a space, where our people can come together and unapologetically say this is a black space, this is an Indigenous space, and we’re going to have the difficult yarns we need to have.”
“We know there are many challenges and barriers, but let’s share the enablers, what are some of the positive things, what have we been actively doing to make change, how are we strengthening our communities, supporting cancer survivors?”
Conference organiser Associate Professor Gail Garvey from the Menzies School of Health Research said she was confident it had lived up to its theme and purpose: connecting, communicating and collaborating.
Moves were underway now to establish an international Indigenous cancer network (with hopes for another international conference in two or three years) and to support the development of country specific networks.
She said a key message from presenters was that cancer among Indigenous people has to be seen in the holistic way that Indigenous people understand health, and also to be open and upfront about difficult topics like racism and trauma.
“We have to acknowledge that Indigenous people experience this ‘continual weathering’, of us and our culture and health and wellbeing,” she said.
Garvey said the conference had revealed both commonalities and differences “between us as Indigenous people and the way services operate and deliver”.
It also highlighted the elements of success that weren’t being implemented, including having Indigenous identifiers for monitoring and providing evidence of outcomes (such as with cervical cancer screening in Australia), the need for Indigenous health workforces, and Indigenous patient navigators.
She said: “We know we need to get more of our mob working in cancer care settings.”
What were some of the highlights?
Michelle Bovill and Yael Bar Zeev, University of Newcastle
For Bovill, the most exciting part of being at the conference was to meet other Aboriginal researchers to whom she doesn’t normally have access.
The standout presentations for both were by Native American Cancer Research Corporation director Dr Linda Burhansstipanov, on the Native Sisters ‘patient navigation’ program, on tobacco control (a particular interest for Bovill whose work is focused on engaging pregnant Aboriginal women on smoking issues) and on the Walking Forward physical exercise program.
“I love her [Dr Linda Burhansstipanov], to see how she’s designing her interventions, she’s very innovative. I could have sat in the room listening to the work she’s doing all day,” Bovill said.
For Bar Zeev, new understandings of diversity were a great insight, including through some of the cultural highlights of the conference, the markedly different cultural traditions of Aboriginal and Torres Strait Islander dance groups.
“I think meeting so many people who have so much in common yet are so diverse was an eye-opener, that was really good for me as a white researcher.”
Scott Leischow from the Mayo Clinic, United States
Leischow said the presentation that really struck him was by Darren Clinch, from the Department of Health and Human Services, on mapping access to healthcare services through geospatial visualisation of barriers and enablers for Aboriginal and Torres Strait Islander people. He said:
“To me, that’s a very powerful approach to be able to understand and drill down in communities, understand what’s going on…. I thought that was really important because that kind of data can help you document what is going on… that’s what you can bring to a policy maker and say ‘if you don’t make some fundamental changes, to the lives of people who don’t have access to fruit and vegies or are exposed heavily to tobacco or don’t have access to good health care, how can we expect their lives to be better?'”
Julie Maria Fresta, Central Queensland, Wide Bay, Sunshine Coast Primary Health Network (PHN)
“I think the highlight for me would have been (Indigenous singer-songwriter) Archie Roach’s conversation with his specialist: that one conversation seemed to pull so many different things that we talked about all week together. Also having had the privilege of seeing him perform the night before was so moving.
When David Williams talked about childhood trauma and research that shows the connection with cancer later in life, (and we) then heard Archie talk about his story (as a member of the Stolen Generation), it brought it all together.”
Uncle Bill Buchanan, National Indigenous Cancer Network (NICaN) ambassador
“The highlight for me was the Yarning Circle, to have the participation of many nations in the circle. Importantly also in that circle we dealt a lot with the experience of cancer survivors, which was also reflected on stage with Archie Roach.”
He said the two different visions for the future outlined by Lowitja’s Romlie Mokak (see above) were also thought provoking.
“I think it’s quite frightening, when you actually reflect on (the worst case scenario), that that’s right where we are today. It’s a very good time for governments to take stock: if they’re going to achieve Closing the Gap (targets), they really have to take responsibility for the current position and embrace a vision that’s going to take us there… I think we’re at worst-case scenario. Is the best case a reality or a dream?”
Dr Alexandra King, Simon Fraser University, Canada (a plenary presenter)
“I was particularly impressed by the commonalities when facing cancer, and by the incredible work that Indigenous peoples in the represented countries have achieved. There is much more to be done, and working collaboratively, so much more is possible.
I see us needing a strong focus on Indigenous leadership within the cancer research and care cascades. I also feel the need of ensuring this is inclusive of all Indigenous peoples – for example, Indigenous healers and knowledge keepers; Indigenous peoples from Central and South America, southeast Asia – and creating appropriate mechanisms and policies to achieve this.
The other way forward for me is a greater focus on Indigeneity in the most positive sense, rather than the focus on colonialism/colonization, racism, and other more negative health determinants.”
Marie McInerney, Croakey’s roving reporter
Menzies researcher Abbey Diaz jumped in a taxi to go home one evening during the conference. The driver asked where she’d been. When she replied, “at the World Indigenous Cancer Conference”, he said, “then you’ll be really interested in what I just heard on the news, that cervical cancer screening rates for Aboriginal women haven’t improved in 20 years!”. The research had been published that day by her colleague Lisa Whop.
Across the conference, lower screening rates for Indigenous people around the globe were an issue, that was seen as closely related to lack of engagement by mainstream health initiatives with Indigenous communities, ongoing Indigenous mistrust of mainstream health services, and the need for community champions and Indigenous navigators to help guide people through the complex and often hostile health systems.
I was struck by one of the recommendations in the Cancer Stories of New Zealand research project for workplace policies, where colleagues can ‘gift’ their sick leave to another colleague who is dealing with cancer.
With financial burden nominated as the biggest worry in a number of ‘unmet needs’ research, it was a measure of the terrible cost to some families and communities of a cancer diagnosis and the role of community.
I was also struck by the irony that the Native Sisters patient navigation program was inspired by Harlem oncologist Dr Harold Freeman, who despaired that black Americans with cancer were not presenting for health care until their tumours were open sores. Yet the conference heard that the first connection many Aboriginal and Torres Strait Islander people have to palliative care may be through hospital emergency departments.
And finally an important warning from BreastscreenWA Aboriginal liaison officer Leanne Pilkington: “Providing access is not engagement.” Watch an interview here.
A selection of conference tweets
And, finally, thanks to all those who helped to share the #WICC2016 news via tweets and photographs. You helped get #WICC2016 trending.
Read the Twitter transcript here.