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Can open data disrupt power relations in health and enhance consumer participation?

VALA Libraries, Technology and the Future invited my fabulous colleague from Melbourne University Fiona Tweedie and I to participate in a webinar discussion as part of Open Access Week. The webinar was hosted by VALA President, Katie Haden. VALA are an independent Australian based not-for-profit organisation that aim to promote the use and understanding of information technology within libraries and the broader information sector.

Is “Open” always “Equitable”?

The theme for Open Access Week for 2018 is ‘Designing equitable foundations for open knowledge.’ But open systems aren’t always set to a default of ‘inclusive’, and there are important questions that need to be raised around prioritisation of voices, addressing perpetual conscious and unconscious bias, and who is excluded from discussions and decisions surrounding information and data access. There are also issues of the sometimes-competing pressures to move toward both increased openness and greater privacy, the latter issue having much currency in the health domain (and more broadly) at present.

  • If we default to inclusive, what does that look like?
  • How do we address conscious and unconscious bias?
  • How do we prioritise voices, identify who is included and/or excluded from discussions?
  • How do we address the pressure to move toward both increased openness and greater privacy, particularly in the area of health data?

You can download the mp4 file of the webinar, or read a summary of what I had to say below.

Most of what I have learned about how to be a good nurse has come from the consumers I have worked with in my clinical practice. I think the people that live most closely to a phenomenon have a unique microscopic vantage point and that as a researcher and clinician, complementing this lived experience with a telescopic view allows us to see both the big picture and the lived experience. Similarly, my experience of innovations in health have been consumer driven: the initiation of text reminders in a health organisation I used to work for because newly arrived Sudanese women asked for it; health promotion activities that included fun and community building, because Pasifika people in South Auckland wanted something more communal. So I am interested in the emergence of data and technology as democratising enablers for groups that experience marginalisation. Consumers with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) who challenged the influential £5m publicly funded PACE trial which shaped research, treatment pathways and medical and public attitudes towards the illness are an example of how making data open and transparent can be transformative.

The PACE trial found that Cognitive Behavioural therapy (CBT) and Graded Exercise Therapy (GET) achieved 22 percent recovery rates (rather than just improvement rates) as opposed to only seven or eight percent in the control groups who did not engage in CBT and GET. The findings contradicted with the experiences of consumers, who suffered debilitating exhaustion after activities of daily living. A five year struggle by Australian Alem Matthees and supported by many scientists around the world who doubted the study’s conclusion resulted in Queen Mary University of London releasing the original data under the UK Freedom of information (FOI) Act at a cost of £250,000. When challenged about the distress that this had caused patients with ME/CFS the researchers claimed to be concerned about the ethics of sharing the data. However, Geraghty (2017) points out:

did PACE trial participants really ask for scientific data not to
be shared, or did participants simply ask that no personal identifiable information (PIIs) be disclosed?

Subsequent reanalysis showed recovery rates had been inflated  and that the recovery rates in the CBT and GET groups were not significantly higher than in the group that received specialist medical care alone. One of the strategies for addressing the lack of transparency in science is to make data open (particularly if another £5m is unavailable to reproduce the study), sharing data, protocols, and findings in repositories that can be accessed and evaluated by other researchers and the public in order to enhance the integrity of research. Funding bodies are now increasingly making data-sharing a requirement of any research grant funding.

https://forbetterscience.com/2016/02/08/pace-trial-and-other-clinical-data-sharing-patient-privacy-concerns-and-parasite-paranoia/

By Leonid Schneider

This story captures the value proposition of making health data open, it can: hold healthcare organizations/ providers accountable for treatment outcomes; help patients make informed choices from options available to them (shared decision making); improve the efficiency and cost-effectiveness of healthcare delivery; improve treatment outcomes by using open data to make the results of different treatments, healthcare organizations, and providers’ work more transparent; be used to educate patients and their families and make healthcare institutions more responsive; fuel new healthcare companies and initiatives, and to spur innovation in the broader economy (Verhulst et al, 2014).

The growing philosophy of open data which is about democratising data and enabling the sharing of datasets has been accompanied by other data related trends in health including: big data-large linked data from electronic patient records; streams of real-time geo-located health data collected by personal wearable devices etc; and new data sources from non-traditional sources eg social and environmental data (Kostkova, 2016). All of which can be managed through computation and algorithmic analysis. Arguments for open data in health include that because tax payers pay for its collection it should be available to them and that the value of data comes from being used by interpreting, analysing and linking it (Verhulst et al., 2014).

According to the open data handbook, open data refers to:

A piece of data or content is open if anyone is free to use, reuse, and redistribute it — subject only, at most, to the requirement to attribute and/or share-alike.

Usually it has three main features:

Availability and Access: the data must be available as a whole and at no more than a reasonable reproduction cost, preferably by downloading over the internet. The data must be available in a convenient and modifiable form.

Reuse and Redistribution: the data must be provided under terms that permit reuse and redistribution including the intermixing with other datasets.

Universal Participation: everyone must be able to use, reuse and redistribute – there should be no discrimination against fields of endeavour or against persons or groups.

Central to which is the idea of interoperability, whereby diverse systems and organizations can work together (inter-operate) or intermix different datasets.

Here are two useful examples of open data being used for the common good. The first concerns statins, which are widely prescribed and cost more than £400m out of a total drug budget of £12.7 billion pounds in England. Mastodon C (data scientists and engineers), The Open Data Institute (ODI) and Ben Goldacre analyzed how statins were prescribed across England and found widespread geographic variations. Some GPs were prescribing the patented statins which cost more than 20 times the cost of generic statins when generics worked just as well. The team suggested that changing prescription patterns could result in savings of more than 1 billion pounds per year. Another study showed how asthma hotspots could be tracked and used to help people with asthma problems to avoid places that would trigger their asthma. Participants were issued with a small cap that fit on a standard inhaler, when the inhaler was used, the cap recorded the time and location, using GPS circuitry. The data was captured over long periods of time and aggregated with anonymized data across multiple patients to times and places where breathing is difficult, that could help other patients improve their condition(Verhulst et al, 2014).

Linking and analysing data sets can occur across the spectrum of health care from clinical decision support, to clinical care, across the health system, to population health and health research. However, while the benefits are clear, there are significant issues at the individual and population level. In this tech utopia there’s an assumption of data literacy, that people who are given more information about their health will be able to act on this information in order to better their health. Secondly, data collected for seemingly beneficial purposes can impact on individuals and communities in unexpected ways, for example when data sets are combined and  adapted for highly invasive research (Zook et al, 2017). Biases against groups that experience poor health outcomes can also be reproduced depending on what type of data is collected and with what purpose (Faife, 2018).

The concern with how data might be deployed and who it might serve is echoed by Virginia Eubanks Associate Professor of Political Science at the University at Albany, SUNY. Her book gives examples of how data have been misused in contexts including criminal justice, welfare and child services, exacerbating inequalities and causing harm. Frank Pasquale in a critique of big data and automated judgement has identified how corporations have compiled data and created portraits using decisions that are neither neutral or technical. He and others call for transparency, accountability and the protection of citizen’s rights by ensuring algorithmic judgements are fair, nondiscriminatory, and open to criticism. However, it is difficult for people from marginalised groups to challenge or interrogate systems or seek redress if harmed for example through statistical aggregation, so fostering dissent and collaboration by public authorities is necessary. Groups with the worst health outcomes have limited access to interventions or the determinants of health to begin with. So, it’s important to ensure that policy and regulation drive structural changes rather than embedding existing discrimination that exposes minority groups to increased surveillance and marginalisation (Redden, 2018).

The advent of Australia’s A$18.5 million national facial recognition system, the National Facial Biometric Matching Capability will allow federal and state governments access to access passport, visa, citizenship, and driver licence images to rapidly match pictures of people captured on CCTV “to identify suspects or victims of terrorist or other criminal activity, and help to protect Australians from identity crime“. The Capability is made up of two parts, the first comprises a Face Verification Service (FVS) which is already operational and allows for a one-to-one image-based match of a person’s photo against a government record. The second part is expected to come online this year and is the Face Identification Service (FIS), a one-to-many, image match of an unknown person against multiple government records to help establish their identity. Critics are concerned at the false positives that similar technologies have found elsewhere like the US and their failure to prevent mass shootings.

Me checking out the biometric mirror at Uni Melb

Me checking out the biometric mirror an artificial intelligence (AI) system to detect and display people’s personality traits and physical attractiveness based solely on a photo of their face. Project led by Dr Niels Wouters from the Centre for Social Natural User Interfaces (SocialNUI) and Science Gallery Melbourne at University of Melbourne.

Context is also important when considering secondary use of data. Indigenous voices like Kukutai observe that openness is not only a cultural issue but a political one, which has the potential to reinforce discourses of deficit. Privacy also has nuance here, public sharing does not indicate acceptance of subsequent use. Group privacy is also important for those groups who are on the receiving end of discriminatory data-driven policies. Open data can be used to improve the health and well being of individuals and communities. The efficiencies and effectiveness of health services can also be improved. Open data can also be used to challenge exclusionary policies and practices, however consideration must be given to digital literacy, privacy and how conditions of inequity might be exacerbated. Importantly, ensuring that structural changes occur that increase the access for all people to the determinants of health.

References

  • Eubanks V. Automating Inequality: How High-Tech Tools Profile, Police, and Punish the Poor. St. Martin’s Press, 2018.
  • Faife C. The government wants your medical data. The Outline, https://theoutline.com/post/4754/the-government-wants-your-medical-data (2018, accessed 16 October 2018).
  • Ferryman K, Pitcan M. Fairness in Precision Medicine. Data and Society, https://datasociety.net/wp-content/uploads/2018/02/Data.Society.Fairness.In_.Precision.Medicine.Feb2018.FINAL-2.26.18.pdf (2018).
  • González-Bailón S. Social science in the era of big data. POI 2013; 5: 147–160.
  • Kostkova P, Brewer H, de Lusignan S, et al. Who Owns the Data? Open Data for Healthcare. Front Public Health 2016; 4: 7.
  • Kowal E, Meyers T, Raikhel E, et al. The open question: medical anthropology and open access. Issues 2015; 5: 2.
  • Krumholz HM, Waldstreicher J. The Yale Open Data Access (YODA) project—a mechanism for data sharing. N Engl J Med 2016; 375: 403–405.
  • Kukutai T, Taylor J. Data sovereignty for indigenous peoples:current practice and future needs. In: Kukutai T TaylorJ , ed. Indigenous Data Sovereignty: Toward an Agenda. Acton,Australia: ANU Press; 2016: 1–22
  • –Lubet S. How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma. The Conversation, 2017, http://theconversation.com/how-a-study-about-chronic-fatigue-syndrome-was-doctored-adding-to-pain-and-stigma-74890 (2017, accessed 22 October 2018).
  • –Pitcan M. Technology’s Impact on Infrastructure is a Health Concern. Data & Society: Points, https://points.datasociety.net/technologys-impact-on-infrastructure-is-a-health-concern-6f1ffdf46016 (2018, accessed 16 October 2018).
  • –Redden J. The Harm That Data Do. Scientific American, 2018, https://www.scientificamerican.com/article/the-harm-that-data-do/ (2018, accessed 22 October 2018).
  • –Tennant M, Dyson K, Kruger E. Calling for open access to Australia’s oral health data sets. Croakey, https://croakey.org/calling-for-open-access-to-australias-oral-health-data-sets/ (2014, accessed 15 October 2018).
  • –Verhulst S, Noveck BS, Caplan R, et al. The Open Data Era in Health and Social Care: A blueprint for the National Health Service (NHS England). http://www.thegovlab.org/static/files/publications/nhs-full-report.pdf (May 2014).
  • –Yurkiewicz I. Paper Trails: Living and Dying With Fragmented Medical Records. Undark, https://undark.org/article/medical-records-fragmentation-health-care/ (2018, accessed 23 October 2018).
  • –Zook M, Barocas S, Crawford K, et al. Ten simple rules for responsible big data research. PLoS Comput Biol 2017; 13: e1005399.
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The Nurses’ and Midwives’ art exchange

Image: We are the Front-line (2022), by Xander Savage

It has been a privilege to be a part of the team who created The Nurses’ and Midwives’ art exchange, at the RMIT Design Hub Gallery as part of the Big Anxiety Naarm/Melbourne. The exhibition highlights creative responses and stories from nurses and midwives who worked through the pandemic in Australia and the US. We wanted to surface nursing and midwifery ways of knowing beyond the dominant empirical models of positivist science, to include: the ethical, aesthetic, and personal (Carper, 1978).

We also wanted an archive of the pandemic that was from them rather than about them. These works are accompanied by responses from RMIT art students and staff. Our team wanted to develop experiential and embodied pedagogical approaches through material making for artists to respond to social justice challenges beyond and within the classroom and studio. We used an inter-professional/inter-sectoral approach to teach students for a semester and matched them with nurses working in diverse healthcare settings.

So, this exhibition is an innovative project, it is a love letter to Nurses and Midwives who have been front and center of the action, and also to those “informal” caregivers feeling the deep exhaustion of providing care during the pandemic. These professions stepped up to be there with those in need, despite the risks, lack of supplies and threats to their own health and that of their loved ones. But the pandemic also highlighted the gaps, the exclusion of Nurses and midwives’ voices at policy tables, the workforce shortages (three-quarters of nurses declared an intention to leave over the next two to five years), the horrible gaps, the lack of support, not being heard, the grind, the wear, and tear. We are grateful for support from RMIT Culture, CAST, the Australian College of Nursing, Eastern Health, Creative Care, and staff and students in the RMIT School of Art.

At the launch, we had the amazing Corona Choir perform from Eastern Health. Here are a few snaps from the night.

Mark Edgoose with a student, talking about their work. Photo credit: Emily Short
Me and some of our guests. Photo credit: Peter Mellow
The project team from left to right: Mark Edgoose, Kelly Hussey-Smith, Moi, Fleur Summers, Grace McQuilten (not pictured). Photo credit: Emily Short

Project team
Dr Kelly Hussey-Smith is an artist-researcher focused on photography as a social practice, the politics of representation, and community-oriented education. She is a Lecturer in Photography at the RMIT School of Art.

Dr Fleur Summers is the studio coordinator in sculpture at the School of Art, RMIT. She focuses on teaching developmental working processes with reference to spatial practice. Fleur has experience in a range of technical processes and has a strong conceptual approach.

Dr Mark Edgoose is the studio coordinator of Gold and Silversmithing, at the School of Art, RMIT. Mark works at the intersections of craft, design and architecture and is fuelled by an interest in both traditional and high-tech materials and processes.

Associate Professor Grace McQuilten is a writer, curator and artist with expertise in contemporary art and design, public art, social practice, social enterprise and community development.

Dr Ruth De Souza is a Fellow of the Australian College of Nursing and a Registered Nurse with a PhD, MA (Nurs), Grad Dip (Counselling) and Diploma in Nursing. Ruth has extensive experience as a clinician, researcher and academic in Aotearoa New Zealand and Australia. She is a 2020 RMIT University Vice Chancellor’s Fellow and is based in the School of Art.

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Birthing and Justice: From intimate, asynchronous, mobile media to a scheduled live audience

When I was twelve years old I went on a work experience trip to a Radio station 1ZM in Tāmaki Makaurau/Auckland with my pal Mandy Cunningham. I had big dreams of being a DJ and radio announcer but I was disappointed that DJs were not autonomous. They had to play particular songs. That was not for me. Fast forward to 2020 when I started my podcast talking with people from First Peoples and People of Colour about birthing in settler societies. I love having autonomy to produce (with great producers like Nicola Harvey and Jon Tjhia) and distribute, as well as the intimacy and random relationships listeners develop with interviewees (check out the feedback at the bottom of the podcast episodes page).

Me with a mike. Talking.

I recorded series 1 in one day in a studio with guests ensconced in studios in Australia, Aotearoa New Zealand, and the United States. I recorded Series 2 and 3 in my home studio (code for dining table which is now my office desk) on the Bass Coast in Victoria, Australia due to lockdowns. So it’s super fun to go from communal listening to communal engagement vis a vis talking to podcast guests in person with audiences. Podcast lovers, I am hosting two panel discussions in October. I am excited about amplifying the voices of five podcast alumni in person at the Big Anxiety Festival in Melbourne next month. The first is a Panel: Caring for the caregivers: Mothers and birthing parents on October 5th, and the second is a discussion after a screening of Perinatal Dreaming on the 6th.

Podcast cover for Birthing and Justice. Artwork by Atong Atem
Design by Ethan Tsang

Caring for the caregiver, mothers and birthing parents on 5th October 2022 from 10-12
I am talking to Dr Helen Ngo, Writers Dr Natalie Kon-Yu and Eleanor Jackson at an event called Caring for the caregiver, mothers and birthing parents on 5th October 2022 from 10-12 . To register follow this Eventbrite link

Care was a big buzzword during the early part of the pandemic. For pregnant people, disruptions in care became a feature. Whether it was the inability to enjoy the physical and social support of family and friends, or that health care became virtual as services were scaled back or reconfigured. The impact for new parents was an increase in responsibility and stress and anxiety, rather than through a system of collective care. In this free event, attendees are invited to virtually listen to the podcast series Birthing and Justice hosted by me, in their own space and time.

Panel members
Eleanor Jackson was my guest on Season 2 Episode 7 and we talked about the poetics and politics of birthing. Eleanor is a Filipino Australian poet, performer, arts producer and community radio broadcaster. She is the author of Gravidity and Parity and A Leaving, both by Vagabond Press. Her live album, One Night Wonders, is produced by Going Down Swinging. Eleanor is committed to developing and hosting events and experiences that showcase the diversity of both poetic language and writers and audiences. She is a former Editor in Chief of Peril Magazine, Board Member of Queensland Poetry Festival and Vice-Chair of The Stella Prize. She is currently Chair of Peril Magazine and Producer of the Melbourne Poetry Map.

Natalie Kon-yu was my guest on Series 3 Episode 4 and we spoke about writing, birth trauma and medical sexism. Natalie is a writer, academic and editor whose work has been published nationally and internationally. She is the co-commissioning editor of #Me Too: Stories from the Australian Women’s Movement (Picador, 2019), Mothers and Others: Why Not All Women are Mothers and All Mothers are Not the Same (Pan Macmillan, 2015) and Just Between Us: Australian Writers Tell the Truth about Female Friendship (Pan Macmillan 2013). Her latest book, The Cost of Labour, is out now through Affirm Press. She lives and works in Naarm.

Helen Ngo was a guest Series 2 Episode 6 and we spoke about bilingualism, the habits of racism and embodied experiences of parenting. Helen is an academic philosopher and DECRA Research Fellow at Deakin University. She works in phenomenology, critical philosophy of race, and feminist philosophy, and has written on topics such as: racialised embodiment and temporalities, anti-racist activism, white privilege and white supremacy. Her 2017 book, The Habits of Racism, explored the different ways racism is taken up and experienced through our bodily habits and habituations. A daughter of Chinese-Vietnamese refugees and a mother to three young children, Helen’s recent work explores questions around language and bilingual parenting as part of a bigger research project on racialised non-belonging and home-making. She lives and works on the unceded land of the Wurundjeri Woiwurrung people of the Kulin Nation.


Perinatal dreaming: On justice, reclamation, and transformation 6th October at The Big Anxiety Forum
Join me in conversation with Gina Maree Bundle, Storm Henry and Marianne Wobcke to reflect on Marianne’s Roadtrip: Perinatal dreaming  workshop and talk: Reclamation, healing, and transformation in our birthing institutions.

Check out this award winning work


Gina and Storm were guests on Series 2 Episode 1 where they spoke about trust in hospitals. In the episode, we talked about working at “The Women’s” (Royal Women’s Hospital, Melbourne), which has a complex history involving the enforcement of the ‘Aborigines’ Protection Act (1869) causing First Nations babies and children to be removed from their families, community and culture. Storm and Gina work to create an intersectional, culturally safe service at multiple levels and promote a whole of hospital approach.

Artist and Program Coordinator of Badjurr-Bulok Wilam at the Royal Women’s Hospital Gina Maree Bundle

Midwife Storm Henry and nurse

Artist and midwife Marianne Wobke

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Book review: This Bridge called my back

I have been a long-time fan of the New Zealand Mental Health Foundation. Starting in 1996 I did some workshops in Northland and around for the community about Depression, while I worked in perinatal mental health. Later, I co-produced a brochure about perinatal mental health for them. So, when the fabulous Kim Higginson asked me if I would feature in a new section on their website, I had to say yes! In My Kete features book reviews and stories from people in the mental health sector sharing what they have found most helpful in their own work and lives. The word/kupu “kete” symbolises the sharing of knowledge and prosperity.

Ceramic kete gifted to me with found sulphur crested cockatoo feathers

Long before social media, my family would eagerly watch the 6pm news. As new migrants to Aotearoa, we would watch with anticipation for even a tiny glimpse of the places we had left behind, that we were connected to. Goa, our turangawaewae, the home of our ancestors, or Tanzania or Kenya, where we had all been born and lived. But it was the seventies, and the closest we ever came was hearing about the famines in Ethiopia and civil war in Angola, until the Montreal Olympics of 1976. We couldn’t wait for the Kenyan and Tanzanian runners like Filbert Bayi to absolutely smash all the other athletes. We knew they were the best!

Our anticipation was thwarted by bigger events. The New Zealand All Blacks had been playing rugby in apartheid South Africa despite the United Nations’ calls for a sporting embargo. 28 African countries led by Tanzania decided to boycott the games after they had asked the International Olympic Committee (IOC) to exclude New Zealand from the Games and were refused. The United Nations secretary-general said he recognised the “deep and genuine concerns” felt by African countries but, “at the same time I wish to point out that the Olympic Games have become an occasion of special significance in mankind’s search for brotherhood and understanding.”

The story about the Olympics shows how keen I was to see anything of my world reflected to me through the collective sphere or mass media. But this was rare, and when I did see something, it was often a globalised reflection of famine, disease or deficit. So I turned to literature. I was a frequent visitor to Titirangi Library in West Auckland, where I discovered Ms Magazine and read every issue I could get my hands on. Through authors like Germaine Greer and Andre Dworkin, I read that white feminism was good and brown women were oppressed by their cultures. I struggled to reconcile this idea of brown men as bad. The men I knew in my community (who were very few in NZ in those days), were also struggling with racism, economic disadvantage and white supremacy. My Dad worked two jobs (as a teacher and then as a cleaner) so that my mother could study to become a teacher. He then came home and did the cooking, while my three sisters and I administered the household so that my mother could study, and our collective free time could be spent on family outings.

Reading This Bridge Called My Back was life changing. For the first time, I saw women of colour foregrounded. They were powerful, knowing, wise, and full-bodied; not deficient, in need of rescuing or pathological. I saw them navigating complicated worlds that were not built for them. I saw collective struggles and collective joy. These stories resonated with me so much I developed a desire for collective solidarities, which led to conference organising (for refugees and Indian social service professionals) and connecting and bringing diverse voices together (the Aotearoa Ethnic Network). I moved beyond exploring gender and incorporated other axes of difference including race, class and sexuality into my academic life. I still carry this work with me as I think about race and health as a researcher. I remain indebted to the solidarities that were brought together in this anthology, for giving me hope and pride in my differences, while also reminding me to always think about who and what is missing from the room, whose voices are not heard and how this can be remedied.

Book Details
Moraga, Cherríe., & Anzaldúa, G. E. (eds.). (1981). First edition. This bridge called my back: Writings by radical women of color. Persephone Press. ISBN 978-0930436100
Moraga, Cherríe., & Anzaldúa, G. E. (eds.). (2021). This bridge called my back: Writings by radical women of color. Fortieth Anniversary Edition. Suny Press. ISBN: 9781438488288

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Lessons on exclusion from past pandemics

I wrote a piece for the Summer 2021/22 edition (Issue 36) of the Hive (the Australian College of Nursing’s quarterly publication). Cite as: De Souza, R. (2021). Lessons on exclusion from past pandemics. The Hive, 36, 16–17. You can also download a pdf of the article for your own personal use.

Lessons-on-exclusionDownload


I have three pandemic stories about health inequity. The first is a painful family one. In July 1961 in Moshi, Tanzania, my aunt died of hospital-acquired smallpox caused by the variola virus five days after giving birth to her newborn son, who died a day later. She left behind her devastated family and a thirteen-month-old daughter. She had been immunised while at school, so we don’t know what happened. We know that some vaccinations in East Africa at that time were unsuccessful because the liquid vaccine had to be refrigerated otherwise it became inactive within three days. The smallpox vaccine was produced in Nairobi or England and it is possible that temperatures were not maintained during shipping or when the vaccine was transported to distribution centres or health clinics. It could also be that a more severe form of smallpox was present in Tanzania at the time.

Closer to home there were the smallpox epidemics of 1789, 1829-32 and the 1860s in Australia (McWhirter, 2009). Smallpox arrived with settlers fifteen months after the first fleet arrived in Australia. Macassans were originally blamed for its arrival, but there was no smallpox in Macassar at the time of the First Fleet. Smallpox was widely believed at the time to come from Asian countries because Asians were thought to be diseased and different. However, smallpox was endemic to Britain and to a lesser degree Europe. The three epidemics all had a major impact on Aboriginal populations but less so on European settlers.

Smallpox was managed in different ways in the various Australian colonies. Vaccinations became available during the 1829-32 epidemic, but there was no legislation with regard to smallpox in Aboriginal communities. Rather than having compulsory vaccination imposed, vaccination occurred in an ad hoc manner if an individual settler or doctor was concerned about an Aboriginal person. In Victoria, where I live, the smallpox epidemic of the 1860s had a devastating impact on Aboriginal people. In the racial hierarchy of the time, white settlers were seen as superior to Aboriginal people and people of color. Aboriginal people were thought to be already at risk of dying, both individually and as a “race”, and were not seen as a threat as a vector of disease or of being in need of a public health response.

Chinese people were also seen as inferior and unsuitable for integration into colonial society. However, they were seen as a threat to British dominance, by virtue of their industriousness and because their numbers swelled through the gold rush era and they were characterised as a source of disease. A smallpox outbreak in 1857 in Melbourne, singled out Chinese people as the source of the threat, despite it being traced to a sailor from Liverpool, led to demands for the compulsory vaccination of Chinese. An outbreak of smallpox in 1887 was attributed to Indian hawkers or to recently arrived Chinese. The Tasmanian Chinese Immigration Act 1887 required that all Chinese entering the colony be compulsorily vaccinated, and this was carried out by the Superintendent of Vaccinations, C.E. Barnard, even as compulsory vaccination was being challenged among the European population on the grounds of contravening individual liberty.

And now to the present. In Victoria, where I live, where the unfair structural arrangements in our society have been exposed. Nine public housing towers with high populations of migrants and people of refugee background in North Melbourne and Flemington were put in lockdown without notice (Ghumkhor, 2021). This racialised response was also seen in Sydney, where people in the western suburbs were policed heavily compared to the eastern parts of the city.

These pandemic examples from the past and recent present show that although we might be in the same boat “some people have yachts and superyachts” (Siouxsie Wiles). There’s the global inequities of vaccine distribution, which are as evident now in terms of Covid as in my Aunt’s time. At the time of writing this (December 2021), Canada had a total vaccination rate per 100 people of 155.67 while Tanzania had a rate of 1.63, compromising the effectiveness of vaccination as a public health strategy (Carey, 2021). We know that this massive disparity will have far reaching impacts. Low vaccination rates mean that the virus can continue to spread and increase the risk of new variants emerging globally. Considering health equity would ensure that the places that needed the vaccine the most could be supported with resources. This is true also of Australia where there was a lack of prioritisation of vaccine supply for the people with the most need (e.g. essential workers in precarious work, people living in high density housing). An equity lens would require targeting people living in ‘LGAs of Concern’ with early intervention to promote understanding of restrictions, vaccine uptake, and Covid-safe work practices (Reeders, n.d.).

The second and third examples show how race and racial hierarchies have played a part in how infectious diseases are managed in settler colonies like New Zealand and Australia. Fueled by fear, we have turned to carceral responses and policing particular areas rather than making public health responses toward equity. These responses rather than community led solutions have been traumatising and reduced trust in population groups that already are distrustful or disengaged from health services (Liddle, 2021). The lack of financial assistance for international students and essential workers spread across different contexts has also exposed how some communities are seen as less worthy of respect or care.

Bringing in an equity lens reveals the limitations of health communication during the pandemic. Firstly, health messaging has not always been accessible for people from culturally and linguistically diverse communities. Initial messaging did not take into account fluency in a language other than English or take into account low health literacy, or diverse work and social contexts that such communities live in, such as the prevalence of precarious essential labour, irregular shift work or multi-generational households. The pivot to digital technologies has also made life more difficult for marginalised communities. Whether for accessing online consultations, or the requirement to use apps to check in at venues and facilities using QR codes, to home schooling and working from home, the mandatory use of unevenly distributed technology has widened existing health inequalities. Once again, the assumption that middle-class, English speaking communities are the Australia public health needs to serve have prevented us from achieving positive outcomes for all. We need far more engagement with marginalised groups and to welcome their participation in producing healthy outcomes for their communities if we don’t wish to repeat the exclusions of the past.

Footnote
10 January 2022 from Dr Nadia Chaves, Clinical lead and Chair of C-19 Network clinical governance committee, Infectious diseases specialist

Thank you for this article, Ruth. I just wanted to mention re your latest article – the C-19 consortium (made up of a consortium of 5 community health organisations – IPC, DPV, EACH, Star health and cohealth) was contracted by Vic gov in 2021 to specifically target vaccinations for at-risk and underserved communitiues including people in social housing, people who are experiencing homelessness, asylum seekers and refugees and people from CALD communities.

We set up vaccination clinics in all the housing towers who were locked down. This has enabled a very high double vax rate in these housing estates. It was great they were able to be prioritised- the main rate limiting step was access to enough vaccine through federal government and also the lack of staff.

I do believe there are opportunities to better engage and empower people with intersections of being underserved outside social housing as well. This includes- people with mental health issues, disabilities, people with preferred language other than English, those with low health literacy and low socioeconomic backgrounds. With Omicron, boosters and children’s vaccinations, unless we better care for these communities they will continue to bear the largest burden of COVID-19 pandemic.

References

Carey, T. A. (2021, November 14). The number that matters in the COVID pandemic is a relative one: vaccine inequity. The Conversation.
Ghumkhor, S. (2021, October 4). Pandemic policing in “multicultural” Australia. Al Jazeera.
Liddle, C. (2021, September 29). Get rid of curfew to restore public confidence in health leadership. The Age.
McWhirter, R. (2009). Smallpox and vaccination in Tasmania. Papers and Proceedings: Tasmanian Historical Research Association.
Reeders, D. (n.d.). We ought’ve known – Bad Blood. Retrieved October 1, 2021, from

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Collaboration and care: Deborah Kelly and No Human Being is Illegal (In All Our Glory)

Wonderland interview Deborah Kelly Being Human exhibition collages
Deborah Kelly & collaborators No Human Being Is Illegal (in all our glory), 2014. Courtesy of Deborah Kelly. Portrait photographer: Sebastian Kriete. Created for the 19th Biennale of Sydney (2014).

When I was a nursing student I remember someone telling me “Nurses care, and Doctors cure”. Apparently, our job was the former, in the biomedical division of labor. I was shocked when I began my clinical experience to find that the health care system did not support care. I mean, nurses attempted to meet people’s needs, but the intensive and intimate labors of caring for the list of patients we were assigned were relentless and it always felt like clock time. Every shift I knew that the minute I walked through the door (particularly when I worked in hospitals) that I would need to completely forget about myself and be present for other people. I needed to meticulously account for my time in increments, scheduling when Person X would get their medication and Person Y would need to have their IV checked, when someone would need their surgical tubes removed, their catheter emptied. Somehow, I also had to show care, concern, respect, warmth in between a multitude of tasks. I’d have to make sure I had lunch at the right time to ensure that others could have their lunch. I often forgot to empty my bladder. This non-stop labor meant that there was little time to also nurture myself or my colleagues. I wondered how it was possible to care for others when there seemed to be no time to care at all. I had nothing to give anyone (let alone myself) after a shift, and thought about how I cared for strangers all day and had nothing left over to care for loved ones. A wise Charge Nurse (that’s you Lyndsay Johnston) moved me to an afternoon shift in my seventh month as a new graduate because she could tell I might burn out. Later after I had worked in community mental health and moved to the perinatal care setting, I was struck by the factory-like induction process into parenthood. The absence of joy and warmth, the tick box processing of parents- to- be through procedures that foregrounded the hospital’s interests of health and safety, but not the transition to parenthood. That’s not to say individual midwives and obstetricians were not kind, but there was something about the way the system was designed that precluded really acknowledging personhood, community and relationality.

I have moved away from clinical practice these days to research and teaching, but I know the advent of electronic health records has reconfigured how work gets done. Some have argued that technology and platforms dictate how care is provided, rather than the recipient of care or their family. While others claim that our technocratic business models are contributing to the loss of hope, and what some call “callous indifference”(Francis, 2013). So, although we come to work in health because we care, something happens to us. We who work in healthcare, we who come to health to make a difference. We, who come with tender hearts as Mimi Niles points out, sometimes end up contributing to a crisis of care in healthcare. This happens to our tender-hearted young quickly, the longer nursing students are in the practice world, the more their capacity to empathise declines. There is evidence of endemic horizontal violence and attrition from the workforce. Putting in place patient-centered care and cultural safety are suggested as ways in which empathy and compassion in health care can be embedded particularly for people for whom these services were never imagined.

How is it possible that harm is done to people while in the ‘care’ of institutions? Serious failings in hospitals and the absence of care (including those at Mid-Staffordshire NHS Foundation Trust Hospital in England) have led to calls for the urgent transformation of health services. Two inquiries (2013 Francis Report) found that basic elements of care were missed, patients were left in soiled beds, had water placed out of reach and received inadequate support for feeding and other activities. Most recently we’ve had Royal Commissions into aged care, disability, and mental health. Could it be that the failure to care is not exceptional, but instead that poor quality is embedded in the structures and processes of the healthcare system? (Goodwin et al., 2018). Not only hospital-acquired infections or surgical errors or medication errors, but also neglect and missed (where an aspect of required patient care is omitted or delayed) care? (Kalisch, Landstrom, & Hinshaw, 2009). How do we strike a careful balance between thinking about the failure to care as a systems-level issue, while also thinking about health professionals as individuals who are a part of systems? (Tierney et al. 2019). We are a profession that cares and we take caring very seriously, but how can we care when caring itself is marginalised? How can we care for those who are marginalised when we ourselves might feel marginalised and unresourced, when we feel overwhelmed? I think unless we seriously think about these questions, we are at risk of reproducing exclusionary practices and unsafe care.

This leads me to the purpose of this blog. Thinking about an experience of caring and being cared for. My portrait is being exhibited at the Being Human exhibition at Wellcome Collection in London, as a part of the No Human Being is Illegal (In All Our Glory) artwork. It’s one of two life-sized nude photographic portraits going on display for a year from a participatory collage work (see the write-up by Tania Leimbach in the Conversation) made for the controversial 19th Biennale of Sydney (2014) ‘You Imagine What You Desire’. 28 Australian and international artists led by Matt Kiem (in response to a call by refugee and ex-detainee organisation RISE) wrote an open letter to the Board asking them to abandon major funder of 41 years, Transfield, who were complicit in Australia’s brutal asylum deterrence and indefinite detention regime. The Board were also invited to engage in further discussion about other sources of ethical funding. There is of course much more to say about the ‘boycott’ which you can read on the xBorder blog and xBorder Working Paper by Angela Mitropoulos, Guardian article by Alana Lentin and Javed de Costa or this piece from Danny Butt and Rachel O’Reilly about art and detention abolition.

I learned a lot from the amazing collective process for the No Human Being is Illegal (In All Our Glory) artwork. I was one of 20 subjects chosen out of 279 people who volunteered themselves as subjects. 50-70 collage participants took part in the intensive collage workshops (thrice-weekly workshops for nine months) to make the portraits. Participants chose materials from Deborah’s extensive library of resources, including books, encyclopedias, reference materials, magazines to make a collage portrait that reflected the subjects’ interests. I was able to share my writing and theoretical and political commitments and actually visit the workshop setting in Sydney to talk to the participants. This project embodied care from conception. Collective decisions were made and I was asked for consent every step of the way, with every iteration of the process, with every travelling exhibit.

Having traveled around New South Wales, Queensland and VIC, it has now made its way to London and is a part of the Wellcome Collection. Wellcome is a global charitable foundation with a free museum and library that encourages “new ways of thinking about health by connecting science, medicine, life and art”. Deborah Kelly the artist who was commissioned for the work is based in Sydney. Her works have been shown around Australia, and in the Singapore, Sydney, TarraWarra, and Venice Biennales. You can read more of her extensive biography here. You can also support her latest work by purchasing a set of holy cards The glorious Liturgy of the Saprophyte by SJNorman.

Submission photo for No Human Being is Illegal (In All Our Glory)

Here’s Deborah’s recollection of the process of making the work (you can also listen to Deborah’s beautiful voice by clicking on this link:

I do want to say, I feel like that the care with which the work was made, the work is constituted by that care. It’s not an add on. That’s what the work is. Your portrait is extremely complex. You came and talked to us and people all took notes. You actually came to the studio, right? Where we were working…and everybody took notes, but everybody’s notes were different. And so we really, really struggled over how to reconcile them. And then we realized we didn’t have to reconcile them. In fact more is more so we can, we could just do everything. Yes, so that’s why it ended up being so abundant, because we were trying to represent as much as we could of what you told us, which is pretty exciting. So the bubbles around you represent both ocean effervescence and champagne.

And inside the bubbles, images that represent various of the things you told us. So inside one of the bubbles is a very cute image of a man and a woman in a typically romantic situation. And that was to honor your relationship with Danny. Yeah, and there’s stuff that represents your life as a nurse, your life, as a nurse in maternal health, your early life in Africa. I think we even represent the car accident somewhere in a quite lateral way. Your relationship with the Catholic church. So the bubbles are all full of all different aspects of things that you told us, but the actual portrait of you, was our interpretation of your own effervescence, body pride, sexiness, love of adornment and color.

Bubbles

So that’s what we were doing, we weren’t hiding you. We were celebrating you. So some people like my Dad, for instance, we were hiding him, and making him modest, a few people needed to be modest. But we wanted to make yours a portrait of glorious shamelessness. And remember you left your leg hair unshaven for us . And we really, really loved that. That’s why there’s nothing covering your legs.

Twinkle toes and all the leaves

You’ll remember we gave you twinkle toes and all of those shells come from Arthur Henry Mee (1875-1943). A very beautiful children’s encyclopedia from the 1930s. They’re printed on this very old fashioned clay coated paper, which is incredibly durable, which is why they’re a hundred years old, but they are still very beautiful in color.

Then we gave you that cloak of leaves, to represent you in the natural world. As a kind of queen, and we gave you that pubic tiara, and that was a nod to queenlinness, and adornment for shamelessness. Although we realized once we’d cut out those thousands of leaves, what a giant task we had set ourselves. On the day we finished, people stood on chairs, cheering themselves.

Beetle

We also gave you some jewelry made out of gold and silver beetles, these were cut out with extraordinary finesse by XXX who hadn’t done collage before, but turned out to be a person of unbelievably fine motor skills. And he was very, very proud of working on that portrait
I really remember all the people in the workshop, who couldn’t bear to be photographed in the nude, saying, oh, I wish this was me. Everybody was like, oh my God. It’s like, we’re just giving this person a big long cuddle!

Hannah Tyler talks about ‘No Human Being Is Illegal (In All Our Glory)’ in the Being Human exhibition at Wellcome Collection.

I’m finishing off this blogpost, reflecting on the challenging year 2021 has been for most people, with uncertain times still ahead, putting the concern with care front and centre. To me, care has an element of attunement or engagement, of generosity. Nurse ethicist Joan Tronto (1993) defines care as: “a species activity that includes everything we do to maintain, continue and repair our ‘world’ so that we can live in it as well as possible. That world includes our bodies, our selves, and our environment, all of which we seek to interweave in a complex, life-sustaining web’ (p. 103). Tronto sees care as a practice that requires attentiveness, responsibility, competence and responsiveness. It involves caring about, caring for, caregiving and care receiving. The inclusion of the latter recognises that at some point we might also be vulnerable and require care. it’s been a lifetime inquiry for me, the question of how can we be invigorated or returned to caring? In my dreams I wish everyone that we cared for, felt secure, cared for and loved. Yet, this isn’t an individual task, it is collective. Feminist academic Alison Mountz and colleagues (2015, p.1239) frame care as warfare in the tradition of Audre Lorde and Sara Ahmed. That is: “cultivating space to care for ourselves, our colleagues, and our students is, in fact, a political activity when we are situated in institutions that devalue and militate against such relations and practices”. In academia, as our summer break approaches here in the Antipodes, I am inspired by the words of Ali Black and Rachael Dwyer (2021, p.9) who talk of their collective work and write “We are fuelling our creative and collective capacities in ways that are expansive, collaborative, pleasurable, and collectively advantageous”. I wish at this seasonal time of contemplation and rest, that this invitation to collectively flourish activates all those who care about, care for, give care and receive care. Rather like I was fed during the making of an exquisite collage work by Deborah Kelly and participants.

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Translating research creatively: Older adults from Culturally and Linguistically Diverse (CALD) communities, social inclusion, and technology

Artwork by Safdar Ahmed

A common critique made by Indigenous and racialized communities is that academic research is extractive. Researchers come to communities or individuals, take the information that they want and folks never hear from them ever again. They don’t get to decide on the questions, how the research will take place, and with whom. The benefits appear to be overly in favor of the researcher and their career than the community. Yet, I also know what it’s like to be an academic. Short time frames, funding cycles and crushing workloads workloads can make it hard for the researcher to do more collaborative work because the system does not always make it easy to do so.

Despite its imperfections and limitations, I’m really interested in how knowledge developed from academic research, can be disseminated to end-users and other non-academic audiences that could benefit. I want my work to have an impact, and speak beyond ‘stakeholders’ and my own intellectual communities. To that end, I’ve typically done inter-disciplinary research in partnership with community organizations. I have written elsewhere about the importance of going beyond “community as participants” to also being involved in developing research questions and methods, being supported to develop research capacity and capability, as well as developing meaningful outputs. In terms of the latter, I try and communicate research findings “back” to participants and their communities in ways that are meaningful and accessible, so as not to further compound inequity. Traditional academic dissemination pathways like reports and peer-reviewed journal articles meet the requirements for rigor by academic communities and stakeholders but can be inaccessible due to paywalls and complex writing. My efforts to disseminate this knowledge have varied from presentations to developing alternatives to peer-reviewed publications. For example in a project with Refugee background women who were sole heads of the household, we produced both a report and a pamphlet. The hope was that the report could be used by policymakers, practitioners, and community members as a way of demonstrating accountability for using money to do research and that the pamphlet could summarise the findings in a less text-heavy way and make it accessible for advocacy and application. On a related note, the project took place after a year of consultation with Refugee communities in New Zealand and reflected our team’s interest in engaged scholarship and collaborative inquiry where we valued diverse perspectives especially lived experience.

Presenting findings in an accessible and appealing way, particularly in ways that are not premised on high levels of health literacy and language proficiency was important for the Alone Together project. I chose to use graphic narratives with a visual emphasis, and as little text as possible. Comics can help pose multilayered questions, challenge stereotypes, humanise participants and provide a call to action for members of the broader public to be allies for this group. I was motivated to find a widely distributed medium where participants could see themselves and where the comic could used to facilitate change and improvement and engage a broader audience, including education, practice, policy and community. Ultimately, I was hoping that the comic could be a vehicle to facilitate empathic engagement, reflection and dialogue by readers from within and outside their communities.

Artwork by Safdar Ahmed

Feedback
A very moving and heartfelt piece.
Oh Ruth. This is such a powerful and beautiful piece.
There are so many voices that are yet to be heard in this COVI9 journey, and I am so grateful that you are able to share them, and in such a respectful way. Thank you for the work you do, and it is incredible to see this translated like this.
Such an outstanding project; including the role of creative practice front and centre. There is much we can learn from this example.
It’s a great example of how creative forms of research translation can engage publics in alternative and powerful ways.
This piece is beautiful, visually and textually. Such a great way to convey profound truths.
Dear Ruth, we met years ago and I will always remember your vivacious energy and sharp mind. Just wanted to let you know that I shared your recent article about older immigrant experience of COVID with the Cert III and IV aged care students at Victoria University. Great feedback. You’re a star. Thanks for your continuing communication of these important issues.

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Should academics podcast?

Photo by Atong Atem, design by Ethan Tsang

To be a great nurse, I believe you have to be a great communicator. I am biased. I have taught communication to undergraduate nursing and osteopathy students, and I am a mental health nurse by background. I am interested in all forms of communication in health whether written or spoken. Nursing has afforded me the enormous privilege of witnessing people at their most vulnerable, joyful and fearful. I have been there during life transitions, I have seen the world widely and deeply through the bodies, hearts and eyes of the people, families and communities of the people I have cared for. I know that we as a profession wield incredible power and have the potential to cause harm, to gatekeep, to become task-focused at the expense of being in relationship. I am grateful to the nurses who have guided and led me, who have empowered me and shown me how to empathize and care for others with skill, evidence, and compassion. I am also grateful to the nurses who’ve extended my knowledge beyond the bedside, to the thinking about practice.

It’s funny thinking about the career choices you make and then how these shape your career trajectory. I enrolled in a Graduate Diploma in Counselling while working on a postnatal ward in 1994, after working in mental health for much of my career. I have written about this elsewhere and how the experiences of the poor care of migrant mothers in Auckland led me to research their experiences and think about them for more than twenty years. Realising that working in the confines of the factory model of birth was not my thing, I was excited to work with others to develop a new community focused maternal mental health service. It’s there I became interested in education as my work increasingly began to involve providing education to community organizations and health professionals about mental health issues in the perinatal period. For a list of these (only since 2000) check out my speaking page. Later, I was contracted to develop a brochure on PND for the NZ Mental Health Foundation and worked closely with consumer groups to do so. It’s been superseded but I still love it.

I did a Masters degree and researched the experiences of Goan mothers in Aotearoa, then undertook a Families Commission project with the Plunket society to look at the experiences of migrant mothers in general. I also spent some time thinking about reflexivity and positionality and what it meant to be an insider/outsider or outsider- within as Patricia Hill-Collins calls it, and the moral aspects of mothering. I later did a secondary analysis of the Korean (discursive) Families Commission data for my Ph.D. along with interviewing Plunket Nurses. I also published the findings about Indian mothers in a book by Sekhar Bandyopadhyay and blogged about the experience of White migrant mothers. Later I talked to Chinese and Indian men about their experiences of becoming fathers in New Zealand. I also talked to Refugee background women about their experiences of parenting and more recently have been researching the intersections of pregnancy, birth, migration, and digital technologies. More recently I have had the honor of speaking with Lia Pa’apa’a and Merindi Schrieber about their project Ngamumu (For Mothers), a community focused creative arts and cultural development project that seeks to decolonise maternal health by supporting mothers during the first 1000 days of motherhood. You can listen to the talk that was hosted by Contemporary Art and Social Transformation (CAST), RMIT University. CAST OUT LOUD: Ngamumu: Decolonising maternal health through creative art and ancestral practices.

The time on the postnatal ward and later in the maternal mental health service shaped how I think about cultural safety in healthcare. From being a clinician, to an educator and then a researcher, I’ve been committed to sharing this work widely, mainly through talking and writing. Increasingly though I feel like written communication has its limits particularly for those Todd Landman describes as the ones “I would most like to engage and influence”. I learned early when I started teaching mental health support workers in NZ and then later when I worked in the Centre for Culture Ethnicity and Health, how important it is to make research accessible to people. I remember my Ph.D. supervisor David Allen from the University of Washington in Seattle asking me how I could make my Ph.D. accessible to nurses and midwives who were in a position to change practice.

University academics are expected to engage with “industry”, and while I am comfortable doing this via social media, as both a blogger and tweep, a podcast feels next level. I like the idea of extending research to beyond practice contexts to public contexts, so knowledge is democratised. It bugs me that the public who pay for us to conduct research cannot access it because it needs a subscription or is behind a paywall as the amazing Siouxsie Wiles points out. I did this years ago by creating an online Aotearoa Ethnic Network Journal to bring great thinkers, writers, artists together in conversation. I also think we need to find other ways than writing to reach people. Since I got a Fellowship at RMIT and I have been based in the School of Art, I’ve been interested in how I might ‘play’ with different ways of communicating. A few months ago I collaborated with amazing artist Safdar Ahmed to create a short graphic comic for the Guardian.

So, now a podcast! Robert Danisch says it is important to trust that my “training, expertise and experience” provide me with some useful skills and knowledge that people might benefit from. As I launch this podcast, I wonder if anyone will listen and whether I can build an audience. As an avid podcast subscriber and listener myself, I love that I can listen to brilliant people all over the world while I am gardening! For the last few months, I’ve been working on a podcast to talk about birth in a settler colony and what it means for People who are BIPOC (Black, Indigenous, People of Color). I’m not sure yet what the affordances might be of using podcasts to communicate research, but I am interested in how my work might reach a bigger audience. When I started developing the podcast, I was worried that it might be considered academically underweight (whereas folks like Mark Carrigan suggest that podcasts are a “natural form of communication for academic ideas”). Now I am (almost) convinced that a podcast can be a way to make research comprehensible so as to engage a broader public in one’s work as well as a way to build an academic network, kinda like a fireside chat, people can speak in their own voices and speak more freely or informally than conventional academic forms of dissemination.

Dr. Katie Linders at the Oregon State University in conversation with Janet Salmons talks about podcasts as a way of helping to increase research literacy because “bite-sized pieces” are a nice way to synthesize research for people from a range of backgrounds. This means that researchers have to think about how they might communicate their findings to different audiences. Cochrane is a network of researchers who provide high-quality information/evidence for healthcare knowledge and decision making geared to health professionals, patients, carers, researchers or funders who have also begun making podcasts as a dissemination tool for health research. Their format is a short summary of a recent Cochrane review from the authors themselves presented in under five minutes. They are recorded in more than 30 languages and include topics such as Does stopping smoking improve mental health?; What are the benefits and risks of psychological therapies for adults with persistent and distressing pain that is neither cancer-related nor a headache? Cochrane Australia has a podcast The Recommended Dose designed to promote an informed and critical approach to healthcare where a journalist interviews researchers, thinkers, writers and health professionals. The London School of Economics Public Policy Group use audio for academic dissemination with their aim to “bring academia online, and broaden access to the social sciences…to stretch the understanding and impact of research beyond the confines of universities.”

So, this week after much agonising I launched Birthing and justice which you can find on your favorite podcast app. I am aware that the language of human reproduction is changing and that not all pregnant people are women, or mothers so hope to reflect more of these changes in how to use language and think about birthing. Please tell all your friends and those who might be interested in making services for pregnant and birthing people more culturally safe. If you like the podcast please subscribe, rate, and or review wherever you listen to your podcasts.

Media support
Many thanks to my colleagues Croakey Health Media (social journalism services) and The Power to Persuade (platform for discussion about social policy in Australia in a global context) for sharing this blog on your websites and the fabulous work that you do. Thanks to my friends Bigoa Chuol and Ayan Shirwa for having me on the Diaspora Blues show on Monday, 23 August 2021 on 3CR.

What people are saying about the podcast:

“Do yourself a favour and tune into the awesome podcast, Birthing and Justice, by Ruth DeSouza. Highly recommended for anyone interested in all matters birthing and racial & decolonial justice. I’ve been listening today to what are the some of most intelligent, insightful, warm, and fierce conversations I’ve heard in this space. More of this stuff please.” Helen Ngo, Melbourne

“Ruth! loving this podcast so much, your warm voice full of wisdom and embrace is such a salve!  “Naomi’s episode sooo strong, Te Reo shone through as a wonderful layer … it makes me teary listening to that language slipping seamlessly into everyday vernacular” Beth Sometimes, Alice Springs

“Amazing podcast talk Dr Ruth! it was very powerful when Dr Naomi compared the land and women’s bodies. I have some friends who are going to love this!” Jayne Wood, London

“This is a beautiful, thoughtful podcast with extremely high production values on an incredibly important topic. Conversations about birth in Australia are either non existent or really limited so it is wonderful to have this resource which brings us the voices of some of the leading practitioners in changing birth care. Ruth is a warm and passionate interviewer and brings the best out of her amazing guests. Episodes are tight and impactful. As both someone who has birthed two babies at home and a critical race researcher I love this podcast and will be recommending it to everyone I know” Anastasia Kanjere, Melbourne

“I loved this – have listened to all 3! Please keep this important conversation going 🙏 thank you for your amazing mahi. I also love how the topics could be enormous but you manage to cover lots and lots in just half an hour… so a super digestible entry point to suggest as first step into education as well as balm and validation and further insight & directions to explore further to those already on this learning journey… very cool!” Vic Parsons, Maternal health coordinator, Capital Coast DHB, Wellington

Dear Dr Ruth, I just wanted to get in touch to let you know I recently came across your Birthing and Justice podcast and really enjoyed it. I am currently convening an Indigenous Health unit and am very pleased to be able to use your episodes with Karel Williams and Dr Naomi Simmonds when we cover maternity. 250 plus students should shortly be tuning in! Ella Kurz, School of Nursing, Midwifery & Public Health, University of Canberra

This is a really important podcast on birth, racism and decolonisation. Each episode is powerful, informative, intelligent and warm. Each speaker contributes a dynamic combination of knowledge, experience and resolute commitment. Together the 3 episodes make a robust and hard-hitting combination. Thank you Ruth De Souza, Dr. Naomi Simmonds, Karel Williams, Dr Mimi Niles, and all who have contributed to this really important mahi. Anna Fielder, New Zealand

This is a brilliant podcast Ruth – warm, engaging and decolonising, I love it! I’m not a health care worker, but you really struck a chord given my own experience. I’m passionate about midwifery care, especially midwifery group practice and home birthing where/if possible, and reclaiming control of our bodies from that default position of medical intervention. I hope this becomes an essential resource for students, practitioners and educators – congratulations. Dr Natalie Harkin
Senior Research Fellow, Flinders University.

If you still think birth is not political. It really frustrates me that when women talk about the significance of birthing there are still some feminists who think it is no more than some kind of middle-class competitiveness/internalised misogyny about vaginal birth versus caesarean or hippy indulgences. This is an amazing podcast series by Dr Ruth De Souza, who I have been friends with for a long time after we met through maternal feminism circles, and it is about birthing and justice. I think you’ll love it. Imagine being moved away from all your friends and family right when you are getting ready to have your first baby. What kind of birthing system thinks that is ok? Imagine going into hospital to have a baby when you and your husband’s mothers experienced babies being removed from them in hospitals. What kind of terror might a hospital birth hold for you? Imagine being an Aboriginal woman who wants to bring soil or plants from home in with her when she births in a hospital miles from her community. Does hospital policy cater for that? Will she be ridiculed or respected for the request?
What is the cost of failing to be truly woman-centred in birth? And what if your woman-centred birthing centre doesn’t include brown and black women?
Birth is political. Andie Fox, Queensland

Have started watching the podcasts – amazing guests so enthralling – an amazing resource you have created Ruth! Dr Nimisha Waller, Postgraduate Programme Leader, Midwifery, Senior Lecturer, Auckland University of Technology

This is such a great podcast! Dr Ruth is a warm and engaging host and her guests are smart, insightful and grounded. And they’re so interesting! You always learn something new. The production quality is awesome. I especially like how this podcast opens up a reflective space to consider how pregnancy and birth care is experienced by people of colour and first nations people. So worth a listen. Liz Stokes, Sydney.

I was so appreciative to hear the words of intelligent women talking on this vitally important and overlooked topic, and to have their words centred, with you gently focussing and facilitating. It felt like a privilege to be allowed into these stories and honouring to give them space to be heard. Shiranthi Fonseka, New Zealand

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Participatory research methods for investigating digital health literacy in culturally and linguistically diverse communities

So thrilled and delighted to have our paper in this special issue of Conjunctions. Transdisciplinary Journal of Cultural Participation on Health, Media and Participation examining how media participation and health participation connect. Beautifully edited by Maja Klausen, Anette Grønning and Carsten Stage.

How beautiful is the cover page!

De Souza, R., Butt, D., Jethani, S., & Marmo, C. (2021). Participatory research methods for investigating digital health literacy in culturally and linguistically diverse communities. Conjunctions. Transdisciplinary Journal of Cultural Participation, 8(1).https://doi.org/10.7146/tjcp.v8i1.117800

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My favorite person, place and thing

The fabulous Nelly Thomas, Melbourne comedian, author & media personality interviewed me for her Person, Place and Thing podcast. It was a rare and generous opportunity to talk about my life and interests, I am more used to talking about my work than myself.

Image by Nelly Thomas
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