He’s half right. Manipulation by recommendation engines and algorithmic oppression is an extant threat that’s changing our relationships and our politics.

But social media - interactive technologies that facilitate the networked sharing of information - can be emancipatory. It can expand our worlds in real ways. That sounds Pollyanna-ish until you recall that we’ve experienced that potential ourselves. Made new friends. Seen things in new ways.

It wasn’t always this way

One of my kids was recently quizzing me about Mastodon, and he pulled me up when I said I like the chronological feed.

“What does that mean? If there’s no algorithm, how do they know what you want to see?”

I realised he’s never known a chronological social media feed. Twitter, Instagram and Facebook abandoned theirs before he was born. The idea that all I see are the accounts I follow, and that I see everything they post, in the order they post, broke his brain a bit. He didn’t like it.

“You might also like” this slop

But the recommendation algorithms aren’t working like they used to either (if they ever really worked at all). Instagram is allowing you to “reset” your recommendation algorithm. Even though they have hundreds of thousands of data points about you, they’re recommending things that you’ve already long-forgotten. Or worse, that you wish you could forget.

Beyond blocking or unfollowing accounts, there aren’t many ways for us as users on algorithm-driven platforms to control the slop we’re fed. In fact most platforms are doubling down on the slop, serving up content from accounts you never followed in an effort to drive up fake engagement metrics. I don’t know if you’ve checked Facebook lately, but the dead internet is real and your relatives are trapped in it.

That highlights a tension we all experience. We all know our privacy is being invaded and our data linked by these recommendation algorithms. We don’t like the idea that we’re living in filter bubbles where something else decides what we see, but we can’t imagine anything else possible.

What instead?

This also made me consider a major upside of the fediverse that we don’t promote enough: the best recommendation algorithm is another human, and on the fediverse that’s all we have.¹ There are still human-driven ways to encounter novelty, and to escape the flattened world served up to us by algorithms.

These are some of the ones I use:²˒³

• For academic reading: The Syllabus is expensive, but it offers genuine insights into different fields. It’s expanded my reading and thinking.
• For links: Metafilter is still the most venerable and reliable source of web-based surprises.
• For films: Letterboxd has a “films like this” algorithm, but that’s about the extent of the recommendations you’ll find. It’s still what your friends watch, listed in the order they watched them.
• For photos: Pixelfed or even classico Flickr will make you happier than Instagram.
• For fiction: BookWyrm eclipses the bizarro, astroturfed morass of snark and spin that is Goodreads. Real humans talking about the books they’ve read, and they’re on the fediverse too.
• Feeds: Good old RSS feeds. These can be hard to get started with, but people like Molly White have shared the feeds they subscribe to, which you can treat like starter packs (and remember that podcasting is basically audio RSS).

These options often have a cost in money or time, essentially because they involve work instead of harvesting your data and mining your attention. If you look at Facebook, TikTok or YouTube you can see that what appears to be free has a cost.

A slop-free existence is possible, but it takes a bit of work.

1. Yes, I know there are bot accounts, but you have to follow them.
2. You’ll notice that Bluesky is nowhere on the list. That’s because even though it’s not be the latter-day 4chan that X-the-everything-app has become, it still relies on graph neural network recommender engines. It’s still slop. The ingredients just aren’t as bad - yet.
3. Social video is tough and not something I know enough about. I’m not a big viewer of YouTube-like platforms. Peertube would be worth trying, but I don’t use it much. YMMV.

I was interested in this speech by Ilona Kickbusch on the challenge of trying to create healthier societies during the polycrisis.

One of her slides jumped out at me, contrasting Goran Dahlgren and Margaret Whitehead’s longstanding model of the determinants of health with a cyclone:

This image has been central to public health messaging since the earliest stages of my career. Seeing it spun into chaos seems like an appropriate metaphor for the challenges that my field faces.

Ilona also quoted German Economics Minister Robert Habeck, who I think has it right:

“…when we live our everyday lives, when we fill up our cars, when we slather our mince on the mince roll, we are always on the side of the good guys. Only people who have never been in a pigsty can believe that. We are leaving a trail of devastation through the earth with our daily lives and we don’t care about it yet.“

Robert Habeck, 2022

This post originally appeared on the Harris-Roxas Health blog.

Between 1.8% and 3.6% of smokers use shisha daily across Australia, up from 1% just three years ago.

That’s the shocking result from the 2022-2023 National Drug Strategy Household Survey that was released Wednesday. It deals with a range of alcohol and other drug use, but I was interested in the data on tobacco use. In particular, what’s been happening with shisha use.

The 2022-3 survey results show a dramatic increase in the daily use of shisha in Australia over the COVID-19 period from 1% of smokers in 2019 to 2.7% only three years later.

Keep in mind that this is daily use. 45 minutes of shisha use equates with more than 100 cigarettes, so this represents a marked increase in overall tobacco consumption for people in this group.

We can be fairly confident this increase is real and that the rate is between 1.8% and 3.6%. The 95% confidence intervals for the 2022-3 survey are 0.9% and the rate of standard error is 17.7% (RSE, generally <25% is considered reliable for most practical purposes).

This challenges assumptions made by many working in tobacco control and public health that shisha use is infrequent.

We also know that use isn’t distributed evenly. 2.7% of all smokers may seem like a small proportion, but this increase disproportionately affects Arabic speaking communities and populations, people living in cities and regional centres, and other migrant groups.

This is also consistent with focus groups that Dr Lilian Chan and I conducted for the Shisha No Thanks project in 2022. People who used shisha told us that their use had intensified through the COVID lockdowns, but that this increase had continued afterwards and was increasingly complemented with e-cigarettes use.

We need to increase our focus on:

• increasing awareness of the harms of water pipe use (this remains low)
• providing avenues for quitting that are tailored to shisha users
• making sure use at food venues complies with existing laws
• enforcing and retail import conditions more consistently.

Sources

AIHW. (2024). National Drug Strategy Household Survey 2022–2023. Australian Institute of Health and Welfare. https://www.aihw.gov.au/reports/illicit-use-of-drugs/national-drug-strategy-household-survey/contents/technical-notes

Fighting against the segregation of people with disabilities, giving a more meaningful voice to people with disabilities, and making sure the NDIS doesn’t become a (more) broken funding model. These were some of the issues discussed during a fascinating panel discussion last night that was organised by the UNSW Disability Innovation Institute to mark the International Day of People with Disability.

The discussion explored what progress has been made in the fifteen years since the adoption of the UN Convention of the Rights of Persons with Disabilities – or lack thereof. The panel included June Riemer, Dr Alastair McEwin, Rosemary Kayess, Fiona Mckenzie and Prof Julian Trollor, and was facilitated by Nas Campanella.

The CPRD played a major role in shifting the perception of people with disabilities from the subjects of medical treatment and charity, to full members of society with human rights.

One of the strongest themes from the discussion was the need to normalise and support people with disabilities to participate in all aspects of life and to end segregation. The content of the Convention remains relevant – and a lot of it remains unrealised:

The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

UN Convention on the Rights of Persons with Disabilities (CRPD) Article 1

As the incoming Disability Discrimination Commissioner Rosemary Kayess summarised, “we’ve got to stop focusing on the diagnosis and start focusing on the processes to support people to participate… Let’s stop with the catchphrases and talk about disability like grown-ups.”

On Friday I had the privilege of attending a forum Celebrating the Whitlam Community Health Program: Lessons for the Future and participating on a panel at the Whitlam Institute.

The forum was the culmination of an ARC-funded Project looking at Contemporary lessons from a history of Aboriginal, women’s and generalist community health services in Australia 1970-2020, which involved more than a dozen investigators from nine universities and partner organisations.

The Community Health Program

The Community Health Program was established in 1973 and within three years it had funded over 700 projects, including community health centres, Aboriginal medical services, and women’s health centres.

Communities must look beyond the person who is sick in bed or who needs medical attention. The (Hospitals and Health Services) Commission will be concerned with more than just hospital services. The concept and financial support will extend to the development of community-based health services and the sponsoring of preventive health programs. 

Even though the program was gouged by later governments many of the services funded still exist. For example I’ve worked with the Liverpool Women’s Health Centre this year, which was founded by a collective in 1975 and funded through the CHP.

The vision of the CHP remains relevant today: ensuring that people can have access to relevant,meaningful multidisciplinary care in the community. When the CHP was conceived in the early ’70s it sought to meet the preventive care needs, to address inequalities, to reduce demands on hospital emergency departments, and tackle rising rates of chronic disease – issues which we have gone backwards on since.

The presentations and panel discussions highlighted that while the community health sector remains dynamic, Commonwealth engagement with the sector has been erratic. There’s a need to return governance to communities, reduce the variability in services offered by community health between states and regions, and to return to block funding rather than project funding. Primary Health Networks are well placed to tackle these issues, and to foster the kind of resilient local service systems that we’ll need to address environmental, social and economic shocks in the near future.

Thanks to all involved for a very thought-provoking afternoon.

Project team

Researcher and Project Manager

Dr. Connie Musolino, University of Adelaide.

Chief Investigators

• Professor Fran Baum AO, Stretton Health Equity, University of Adelaide.
• Associate Professor Tamara Mackean, Flinders University.
• Professor Warwick Anderson, The University of Sydney.
• Emeritus Professor Colin MacDougall, Flinders University.
• Professor Virginia Lewis, La Trobe University.
• Associate Professor David Legge, La Trobe University.
• Dr. Toby Freeman, University of Adelaide. 

Partner Investigators

• Patricia Turner AM, CEO of the National Aboriginal Community ControlledHealth Organisation (NACCHO).
• Denise Fry, Sydney Local Health District.
• Paul Laris, Paul Laris and Associates.
• Tony McBride, Tony McBride & Associates.
• Jennifer Macmillan, La Trobe University.

Researchers and Students

• Dr. Helen van Eyk, University of Adelaide.
• Dr. James Dunk, The University of Sydney.
• Abdullah Sheriffdeen, Flinders University.
• Jacob Wilson, Flinders University.

Even though many aged care services don’t provide the care that older people and carers need and want, some do it much better than others. Why?

That’s the question colleagues from WSU, UNSW, SESLHD, SWSLHD, RCSI and I explored in an open access article that explores these questions, led by Associate Professor Ann Dadich.

Rather than focusing on the substantial and systemic problems facing aged care, this study examined brilliant aged care — practices that exceeded expectation.

There are many insights into what can lead to brilliant aged care, which can be broadly categorised into:

• deep understanding of the older person
• more than a job
• innovative practices
• permission to reprioritise.

Some of the best insights came from the artefacts that people were asked to bring to the interview, which were items (e.g. photos, items, artworks or other objects) that reflected brilliant aged care for them. These artefacts opened up new lines of discussion and new ideas, for example:

“people in the late stages of dementia are like an oyster, one of the ugliest, kind of gnarled shells you could possibly think of. There are so many beautiful shells in the world. The oyster isn’t one of them and yet when you open it up, it has this extraordinary little pearl inside it and that’s what we need to find in every older person. Every older person, no matter … what their state of health or wellbeing, still has that pearl that is that beautiful human being inside them and it’s our job, not their job, it’s our job to open that up and find that pearl.” (Grace)

There’s a lot more in the open access article – take a look.

Dadich, A., Kearns, R., Harris-Roxas, B., Ni Chroinin, D., Boydell, K., Ní Shé, É., Lim, D., Gonski, P., & Kohler, F. (2023). What constitutes brilliant aged care? A qualitative study of practices that exceed expectation. Journal of Clinical Nursing, online first. https://doi.org/10.1111/jocn.16789

I read a useful post by Erin Kissane, where they asked people on Bluesky about what their negative experiences of Mastodon had been. I recommend you read it.

The main issues reported by people were that:

• they got scolded, usually for failing to use content warnings
• that they couldn't discover or easily search for people to follow
• it's confusing to have multiple instances
• it's too serious
• people are being denied features like reposts in the name of safety, rather than being treated by adults.

Separate to Erin's work, I asked a similar question on Bluesky last week and received a much smaller, but consistent set of responses.

We should take these issues seriously. Mastodon should continue to aspire to be a safe place, in particular people who are marginalised on the basis of race, gender, sexuality, disability and poverty. Many of the complaints identified by Erin are, at least in part, reflective of deep concerns about the safety of users that have guided the development of the platform.

However we have to acknowledge that people have been driven off. Many of those who've gone would make Mastodon a richer, more diverse and more interesting place. I changed instances last week and in the process I unfollowed several hundred accounts that I used to interact with, but who haven't posted for at least six months. I miss a lot of these people and we shouldn't callously dismiss their departure.

Perhaps we need to chart a middle path between safety and approachability.

The way we make and keep Mastodon, and the fediverse more generally, safe is by not tolerating bad faith nonsense. Agonising over this is a weakness that villains exploit, and which has systematically ruined corporate social media (though their owners have done a good job of ruining that all on their own).

I confess that I get frustrated with complaints about content warnings (CWs). Nobody has a right to my eyeballs or my thoughts. Screaming into the void is one thing, but you don't have the right to pour your negative emotional state into my brain.

The caveat to this, and it's a critical one, is that many people of colour and trans people have said that they've been lectured to use content warnings when complaining about the people, structures and processes that oppress them (Often referred to as a home owners association – or HOA – mindset. HOAs are themselves a U.S. term, so its usefulness as shorthand is pretty limited).

We have to believe these people. Their experiences are real and their perspectives are legitimate. The need to listen to these people precisely the we can't allow this variation of bad-faith sealioning to proliferate, and for CW scolding to be weaponised.

Again this speaks to the need for a middle path between safety and approachability.

Similarly, maybe people on the fediverse should throttle back on “you need to” posts if someone doesn't use a CW or include alt-text on an image. I like those norms, they actually help inclusivity, but they're possibly at the expense of being welcoming and allowing people to make good-faith mistakes.

None of these issues are resolved by technical affordances. A repost button that allows to dunk on other people would be neither more welcoming nor safer.

The middle path between safety and approachability will be charted by how we act.

Ben Harris-Roxas Website | Publications | Mastodon

I guest edited a special issue of the Australian Journal of Primary Health with Dr Liz Sturgiss that reflects on more than 50 years of the Inverse Care Law.

The Inverse Care Law was first coined by Julian Tudor Hart in 1972 to refer to availability of good medical and social care varying inversely with the needs of the population served .

As we note in the editorial:

…we cannot forget the importance of income inequality as one of the primary manifestations of disadvantage. Poverty remains one of the principal determinants of how the inverse care law plays out in primary health care and it is a cross-cutting issue that affects all disadvantaged groups to varying degrees. All approaches to improve the access to primary care would benefit from specific attention to how the needs of those living in poverty are served.

The special issue includes a range of articles on the Inverse Care Law itself, Aboriginal and First Nations health, care for transgender people, access for people from culturally diverse backgrounds, and general practice. Most are open access – please take a look.

References

It comes instead when I am fighting not an open but a guerrilla war with my own life, during weeks of small household confusions, lost laundry, unhappy help, canceled appointments, on days when the telephone rings too much and I get no work done and the wind is coming up. On days like that my friend comes uninvited. (Joan Didion, 1979)

It's hard for me to remember a time before migraine. My first one was when I was thirteen, after a day of what I later came to recognise as prodrome and aura followed by disembodied but all-consuming pain.

Everyone's migraine is different, but that doesn't stop people from recommending treatments based on their own experiences. My migraine is known as “classic migraine” or migraine with aura. I see see points of colour, become sensitive to light, get confused, and start speaking gibberish. This is known as “word salad”, which doesn't really do justice to the sensation of one's mind being unable to select the right word, of being decoupled from the ability to use language.

Migraine is the second most common cause of disability, after back pain (Steiner et al., 2020). Its causes remain elusive, though it seems likely that it's a collection of neurological and neurovascular disorders. I think (hope?) it will always be somewhat unknowable. For a while my brain doesn't work and I'm incapacitated, and then it passes. It feels like something that can't be fully known.

I've become better at managing my migraine over the years, which is simply to say that I've become better at recognising the early signs. I've tried drugs, but the trade-offs stack up quickly. Weighing up side effects and the risk of migraine changes when it's been months or, once, years since my last migraine.

I had a bad one yesterday, my worst in quite a while. I'm still fuzzy and depleted.

People who experience tinnitus are often advised to undertake cognitive restructuring, to think of tinnitus as a friend who's always with them (Fuller et al., 2020). I don't think I'll ever be able to think of migraine as anything other than a tormentor.

If there is a good aspect of migraine it's in its passing. Nausea intensifies, and for me, suddenly, relief. The weight is removed. Light becomes less harsh. Colours change. Language returns.

Sources

Didion, J. (1979). The White Album. Simon & Schuster.

Fuller, T., Cima, R., Langguth, B., Mazurek, B., Vlaeyen, J. W., & Hoare, D. J. (2020). Cognitive behavioural therapy for tinnitus. Cochrane Database of Systematic Reviews, 2020(1). https://doi.org/10.1002/14651858.CD012614.pub2

Steiner, T. J., Stovner, L. J., Jensen, R., Uluduz, D., Katsarava, Z., on behalf of Lifting The Burden: the Global Campaign against Headache. (2020). Migraine remains second among the world’s causes of disability, and first among young women: findings from GBD2019. The Journal of Headache and Pain, 21(1), 137. https://doi.org/10.1186/s10194-020-01208-0

Ben Harris-Roxas Website | Publications | Mastodon

An important paper from our Shisha No Thanks! project, led by Lilian Chan, has been published:

This is one of the first published evaluations of a health promotion intervention targeting young people to address the growing global trend of waterpipe smoking. It makes a timely and important contribution that demonstrates that co-design social marketing campaigns can raise awareness of messages about the harms of water pipe smoking among young people of Arabic speaking background. 

It’s open access and free to access.

References

Dr Liz Sturgiss and I are guest editing a special issue of the Australian Journal of Primary Health on “Equity in Primary Health Care Provision: More than 50 years of the Inverse Care Law”.

The special issue will cover a range of topics, including:

• Comprehensive primary health care for specific populations, including
  – prison populations
  – Aboriginal and Torres Strait Islanders, and First Nations
  – culturally and linguistically diverse communities
  – people living in poverty
  – populations experiencing homelessness and unhoused people
  – rural and remote health.
• Models of care and health services research.
• Team based care and exploration of scope of practice.
• Policy innovations and funding models.
• Community-based responses to the needs of marginalised and oppressed groups.

There’s more information on the special issue and the Australian Journal of Primary Health herehttps://www.publish.csiro.au/py/content/CallforPapers#1. Final submissions are due by 15 July 2022 but we’re asking that people submit EOIs in the form of an abstract by 30 March 2022.

The past year has also seen significant changes in academic publishing. There has been an emphasis on rapid dissemination of research findings during the pandemic, increasing the prominence of pre-publication manuscripts and reinforcing the need for timely peer review. There has been a significant increase in the volume of manuscripts submitted, including to the AJPH.

At the same time, it is more difficult than ever to find peer reviewers for submitted articles. There has been a significant increase in the pressures on people’s time, through their paid jobs, but also because of juggling caring responsibilities during multiple lockdowns. Many people have been redeployed to support health systems and organisations to respond to the COVID-19 pandemic. The Australian Government’s decision to not provide any financial support to universities during the pandemic has led to thousands of jobs being lost across the sector over the past year, with more losses likely to come. Precarious employment has become even more entrenched and fewer people are in jobs that include service to the profession as part of their roles. This leads to fewer people being able to undertake reviews at the time we need high-quality peer review most.
— Read on www.publish.csiro.au/py/Fulltext/PYv27n6_ED

It’s been a pleasure being an Associate Editor for AJPH, and it was good to have this opportunity to reflect on the pst year with Virginia Lewis and Jenny Macmillan as I’m stepping down.

“We are always engaged after there is a problem – never upfront. The damage that has been done is quite severe on the ground and there is a lot of feeling that this is racist”- Randa Kattan, CEO of the Arab Council Australia

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Croakey published a comprehensive summary of the think tank workshop hosted by the UNSW School of Population Health and organised by my colleague A/Prof Holly Seale. It features some inspiring practical activities led by culturally diverse communities, and the findings of research from across Queensland, New South Wales, and Victoria.

“This current pandemic again highlights that there is a critical need to ensure services, communication and efforts and other pandemic strategies are designed and delivered in a culturally responsive way,” she said. Seale stressed collaboration with people from CALD backgrounds, including refugee communities, was critical to improving future pandemic plans as well as continuing ongoing COVID-19 activities.

Engage and empower: ensuring culturally diverse communities aren’t left behind on the road out of COVID