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Failure to include Black communities in health policy public engagement perpetuates health disparities

While policy organizations publicly claim that they want input from racialized and other marginalized communities, many fail to listen to, accept or integrate…

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Not engaging Black communities meaningfully in health and other policy-making processes has been a critical failure, reflecting a history of systemic racism, marginalization and political indifference. (Nappy.co), CC BY

It is time for us to accept that policy failure and lack of community engagement in policy decision-making go hand-in-hand. The fact that the communities with the worst health outcomes are also the communities least likely to be meaningfully engaged in health policy decision-making should not be a surprise.

As it stands, a growing body of evidence suggests that while many decision-making bodies proclaim publicly that they want input from racialized and other marginalized communities, many institutions are not willing to listen to, accept or integrate what those communities have to say.

Broad systemic problems caused by longstanding exclusion and privilege are increasingly being acknowledged as overdue for correction. However, these complex issues are far too often papered over with helpful-sounding but empty rhetoric and symbolic and performative gestures of inclusion.

Over time, more and more people are coming to acknowledge that proclaiming to be inclusive while not actually doing substantive work is simply another tactic for preserving the status quo.

Health-care disparities

Our research, as part of the Public Engagement in Health Policy team, examines two key things:

  1. How, and to what extent, Black communities have been traditionally engaged in health policymaking; and,

  2. How, through creating their own health-focused solutions and interventions, Black communities’ self-advocacy and mobilization can provide great insight into persistent health system and policy gaps, and what potential solutions can look like.

In health-care systems, measurable outcomes such as disease prevalence and outcomes and indicators of trust in medical systems show that the system has chronically failed Black communities and is long overdue for systemic change.

The pandemic made these cracks painfully clear and very difficult to ignore.

Black communities in Canada and the United States are at higher risk for contracting COVID-19, have been dying at disproportionate and alarming rates, and suffer greater negative economic impacts.

A health-care worker in PPE about to swab a patient's throat
Black communities in Canada and the United States are at higher risk for contracting COVID-19 and have been dying at disproportionate and alarming rates. THE CANADIAN PRESS/Paul Chiasson

We have known for some time that social determinants such as race, social class, education and environment influence health outcomes in both everyday and emergency situations.

Resolving the all-too-abundant disparities demands making room to hear from the people who aren’t getting the health care they need, but that isn’t happening enough, and when it does, it clearly isn’t having the necessary effect.

A recent review of government-initiated public and patient engagement activities in health policy from 2001-21 showed that only 14 per cent of 132 cases even mentioned prioritizing or engaging with marginalized populations.

All this raises the question, who really is “the public” in public engagement — and how legitimate and effective can such processes be when there are such critical gaps in representation and voice?

In response to this question, some scholars have argued that activities engaging the public in creating health policy are often merely performative “spectacles of public participation.”

They are prone to political interference, are often inadequately resourced and can result in unfulfilled expectations. They can also be self-selecting and deliberately designed to make inclusive engagement difficult.

Critical scholars have also pointed to processes that favour amenable, acquiescent perspectives that do not disrupt the status quo, while devaluing, co-opting and delegitimizing dissenting and critical voices.

Critical questions

If we are prepared to reckon with why this is happening, there are some critical questions we should be asking as researchers, health-care providers, activists and policy-makers.

What do we think we know about the needs and desires of Black communities in Canada as it relates to their health, and where does this knowledge come from? How have we historically engaged Black communities in health policy-making in Canada? To what extent are Black communities actually represented in the public engagement processes we speak about? Are we even evaluating which communities our public engagement processes actually engage?

Three people sitting at a table with laptops; two are watching the third as she speaks
Some scholars have argued that activities engaging the public in creating health policy are often merely performative ‘spectacles of public participation.’ (Nappy.co), CC BY

What challenges have we encountered when attempting to engage Black communities in these processes, and to what do we attribute these challenges?

Why are we not more alarmed by the disparities in outcomes for Black and other marginalized communities during COVID-19 and more broadly?

These are not technical issues but existential questions about the efficacy of our health systems and policies, and who these systems are traditionally designed to serve.

Finally, while there is vital “grey” or non-academic data captured by practitioners and community organizations (such as white papers, research reports, governmental publications, and policy, organizational and institutional analyses), it is essential that the health needs and experiences of Black communities in Canada be studied rigorously and ethically and reflected in academic literature.

It is therefore critical that we continue to advocate for the collection of race-based health data across Canada to strengthen health-equity discussions and policy reform.

Veneer of action

One of the profound impacts of the Black Lives Matter movement, particularly following the murders of George Floyd and Breonna Taylor, has been growing exasperation with the ways politicians and institutions often feign ignorance about the systemic barriers and forms of violence Black communities have long faced in their daily lives.

Symbolic acts of anti-racism that present a veneer of action rather than substantive structural change only add insult to injury. For example, when engaging marginalized communities, recruiting methods often favoured privileged populations, and one-off methods such as surveys were common, rather than substantively engaging marginalized communities in problem-solving.

A man with his hands in the air speaking to others
It is essential that the health needs and experiences of Black communities in Canada be studied rigorously and ethically and reflected in academic literature. (Shutterstock)

While we continue to pursue more research, we need simultaneous and courageous conversations at policy tables that begin with a radical new level of honesty.

This means acknowledging that not engaging Black communities meaningfully in health and other policy-making processes has been a critical failure, reflecting a history of systemic racism, marginalization, and political indifference. It needs to be tackled with focus, humility, intentionality, and imagination.

In other words, what got us here won’t get us there.

We also need to understand that Black communities are not sitting by idly in a burning house waiting to be engaged. They are often out there, self-mobilizing, developing systems of mutual aid, building sophisticated community infrastructure and making their voices and demands heard. This work should be visible, lauded and properly resourced — not sidelined.

All forms of consultation and decision-making require openness to diverse views, which means shifting away from the top-down approaches governments have traditionally employed in forming health policy.

To be truly transformative, public engagement in health policy must reflect the agency, diversity, and interconnectivity of all communities.

With that said, if we begin any of this work without Black and other underserved communities leading these discussions, we have missed the point entirely.

This essay was prepared by members of the Public Engagement in Health Policy team, which is funded and supported by the Future of Canada Project at McMaster University.

Rhonda C. George does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.

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There will soon be one million seats on this popular Amtrak route

“More people are taking the train than ever before,” says Amtrak’s Executive Vice President.

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While the size of the United States makes it hard for it to compete with the inter-city train access available in places like Japan and many European countries, Amtrak trains are a very popular transportation option in certain pockets of the country — so much so that the country’s national railway company is expanding its Northeast Corridor by more than one million seats.

Related: This is what it's like to take a 19-hour train from New York to Chicago

Running from Boston all the way south to Washington, D.C., the route is one of the most popular as it passes through the most densely populated part of the country and serves as a commuter train for those who need to go between East Coast cities such as New York and Philadelphia for business.

Veronika Bondarenko captured this photo of New York’s Moynihan Train Hall. 

Veronika Bondarenko

Amtrak launches new routes, promises travelers ‘additional travel options’

Earlier this month, Amtrak announced that it was adding four additional Northeastern routes to its schedule — two more routes between New York’s Penn Station and Union Station in Washington, D.C. on the weekend, a new early-morning weekday route between New York and Philadelphia’s William H. Gray III 30th Street Station and a weekend route between Philadelphia and Boston’s South Station.

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According to Amtrak, these additions will increase Northeast Corridor’s service by 20% on the weekdays and 10% on the weekends for a total of one million additional seats when counted by how many will ride the corridor over the year.

“More people are taking the train than ever before and we’re proud to offer our customers additional travel options when they ride with us on the Northeast Regional,” Amtrak Executive Vice President and Chief Commercial Officer Eliot Hamlisch said in a statement on the new routes. “The Northeast Regional gets you where you want to go comfortably, conveniently and sustainably as you breeze past traffic on I-95 for a more enjoyable travel experience.”

Here are some of the other Amtrak changes you can expect to see

Amtrak also said that, in the 2023 financial year, the Northeast Corridor had nearly 9.2 million riders — 8% more than it had pre-pandemic and a 29% increase from 2022. The higher demand, particularly during both off-peak hours and the time when many business travelers use to get to work, is pushing Amtrak to invest into this corridor in particular.

To reach more customers, Amtrak has also made several changes to both its routes and pricing system. In the fall of 2023, it introduced a type of new “Night Owl Fare” — if traveling during very late or very early hours, one can go between cities like New York and Philadelphia or Philadelphia and Washington. D.C. for $5 to $15.

As travel on the same routes during peak hours can reach as much as $300, this was a deliberate move to reach those who have the flexibility of time and might have otherwise preferred more affordable methods of transportation such as the bus. After seeing strong uptake, Amtrak added this type of fare to more Boston routes.

The largest distances, such as the ones between Boston and New York or New York and Washington, are available at the lowest rate for $20.

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The next pandemic? It’s already here for Earth’s wildlife

Bird flu is decimating species already threatened by climate change and habitat loss.

I am a conservation biologist who studies emerging infectious diseases. When people ask me what I think the next pandemic will be I often say that we are in the midst of one – it’s just afflicting a great many species more than ours.

I am referring to the highly pathogenic strain of avian influenza H5N1 (HPAI H5N1), otherwise known as bird flu, which has killed millions of birds and unknown numbers of mammals, particularly during the past three years.

This is the strain that emerged in domestic geese in China in 1997 and quickly jumped to humans in south-east Asia with a mortality rate of around 40-50%. My research group encountered the virus when it killed a mammal, an endangered Owston’s palm civet, in a captive breeding programme in Cuc Phuong National Park Vietnam in 2005.

How these animals caught bird flu was never confirmed. Their diet is mainly earthworms, so they had not been infected by eating diseased poultry like many captive tigers in the region.

This discovery prompted us to collate all confirmed reports of fatal infection with bird flu to assess just how broad a threat to wildlife this virus might pose.

This is how a newly discovered virus in Chinese poultry came to threaten so much of the world’s biodiversity.

H5N1 originated on a Chinese poultry farm in 1997. ChameleonsEye/Shutterstock

The first signs

Until December 2005, most confirmed infections had been found in a few zoos and rescue centres in Thailand and Cambodia. Our analysis in 2006 showed that nearly half (48%) of all the different groups of birds (known to taxonomists as “orders”) contained a species in which a fatal infection of bird flu had been reported. These 13 orders comprised 84% of all bird species.

We reasoned 20 years ago that the strains of H5N1 circulating were probably highly pathogenic to all bird orders. We also showed that the list of confirmed infected species included those that were globally threatened and that important habitats, such as Vietnam’s Mekong delta, lay close to reported poultry outbreaks.

Mammals known to be susceptible to bird flu during the early 2000s included primates, rodents, pigs and rabbits. Large carnivores such as Bengal tigers and clouded leopards were reported to have been killed, as well as domestic cats.

Our 2006 paper showed the ease with which this virus crossed species barriers and suggested it might one day produce a pandemic-scale threat to global biodiversity.

Unfortunately, our warnings were correct.

A roving sickness

Two decades on, bird flu is killing species from the high Arctic to mainland Antarctica.

In the past couple of years, bird flu has spread rapidly across Europe and infiltrated North and South America, killing millions of poultry and a variety of bird and mammal species. A recent paper found that 26 countries have reported at least 48 mammal species that have died from the virus since 2020, when the latest increase in reported infections started.

Not even the ocean is safe. Since 2020, 13 species of aquatic mammal have succumbed, including American sea lions, porpoises and dolphins, often dying in their thousands in South America. A wide range of scavenging and predatory mammals that live on land are now also confirmed to be susceptible, including mountain lions, lynx, brown, black and polar bears.

The UK alone has lost over 75% of its great skuas and seen a 25% decline in northern gannets. Recent declines in sandwich terns (35%) and common terns (42%) were also largely driven by the virus.

Scientists haven’t managed to completely sequence the virus in all affected species. Research and continuous surveillance could tell us how adaptable it ultimately becomes, and whether it can jump to even more species. We know it can already infect humans – one or more genetic mutations may make it more infectious.

At the crossroads

Between January 1 2003 and December 21 2023, 882 cases of human infection with the H5N1 virus were reported from 23 countries, of which 461 (52%) were fatal.

Of these fatal cases, more than half were in Vietnam, China, Cambodia and Laos. Poultry-to-human infections were first recorded in Cambodia in December 2003. Intermittent cases were reported until 2014, followed by a gap until 2023, yielding 41 deaths from 64 cases. The subtype of H5N1 virus responsible has been detected in poultry in Cambodia since 2014. In the early 2000s, the H5N1 virus circulating had a high human mortality rate, so it is worrying that we are now starting to see people dying after contact with poultry again.

It’s not just H5 subtypes of bird flu that concern humans. The H10N1 virus was originally isolated from wild birds in South Korea, but has also been reported in samples from China and Mongolia.

Recent research found that these particular virus subtypes may be able to jump to humans after they were found to be pathogenic in laboratory mice and ferrets. The first person who was confirmed to be infected with H10N5 died in China on January 27 2024, but this patient was also suffering from seasonal flu (H3N2). They had been exposed to live poultry which also tested positive for H10N5.

Species already threatened with extinction are among those which have died due to bird flu in the past three years. The first deaths from the virus in mainland Antarctica have just been confirmed in skuas, highlighting a looming threat to penguin colonies whose eggs and chicks skuas prey on. Humboldt penguins have already been killed by the virus in Chile.

A colony of king penguins.
Remote penguin colonies are already threatened by climate change. AndreAnita/Shutterstock

How can we stem this tsunami of H5N1 and other avian influenzas? Completely overhaul poultry production on a global scale. Make farms self-sufficient in rearing eggs and chicks instead of exporting them internationally. The trend towards megafarms containing over a million birds must be stopped in its tracks.

To prevent the worst outcomes for this virus, we must revisit its primary source: the incubator of intensive poultry farms.

Diana Bell does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.

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This is the biggest money mistake you’re making during travel

A retail expert talks of some common money mistakes travelers make on their trips.

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Travel is expensive. Despite the explosion of travel demand in the two years since the world opened up from the pandemic, survey after survey shows that financial reasons are the biggest factor keeping some from taking their desired trips.

Airfare, accommodation as well as food and entertainment during the trip have all outpaced inflation over the last four years.

Related: This is why we're still spending an insane amount of money on travel

But while there are multiple tricks and “travel hacks” for finding cheaper plane tickets and accommodation, the biggest financial mistake that leads to blown travel budgets is much smaller and more insidious.

A traveler watches a plane takeoff at an airport gate.

Jeshoots on Unsplash

This is what you should (and shouldn’t) spend your money on while abroad

“When it comes to traveling, it's hard to resist buying items so you can have a piece of that memory at home,” Kristen Gall, a retail expert who heads the financial planning section at points-back platform Rakuten, told Travel + Leisure in an interview. “However, it's important to remember that you don't need every souvenir that catches your eye.”

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According to Gall, souvenirs not only have a tendency to add up in price but also weight which can in turn require one to pay for extra weight or even another suitcase at the airport — over the last two months, airlines like Delta  (DAL) , American Airlines  (AAL)  and JetBlue Airways  (JBLU)  have all followed each other in increasing baggage prices to in some cases as much as $60 for a first bag and $100 for a second one.

While such extras may not seem like a lot compared to the thousands one might have spent on the hotel and ticket, they all have what is sometimes known as a “coffee” or “takeout effect” in which small expenses can lead one to overspend by a large amount.

‘Save up for one special thing rather than a bunch of trinkets…’

“When traveling abroad, I recommend only purchasing items that you can't get back at home, or that are small enough to not impact your luggage weight,” Gall said. “If you’re set on bringing home a souvenir, save up for one special thing, rather than wasting your money on a bunch of trinkets you may not think twice about once you return home.”

Along with the immediate costs, there is also the risk of purchasing things that go to waste when returning home from an international vacation. Alcohol is subject to airlines’ liquid rules while certain types of foods, particularly meat and other animal products, can be confiscated by customs. 

While one incident of losing an expensive bottle of liquor or cheese brought back from a country like France will often make travelers forever careful, those who travel internationally less frequently will often be unaware of specific rules and be forced to part with something they spent money on at the airport.

“It's important to keep in mind that you're going to have to travel back with everything you purchased,” Gall continued. “[…] Be careful when buying food or wine, as it may not make it through customs. Foods like chocolate are typically fine, but items like meat and produce are likely prohibited to come back into the country.

Related: Veteran fund manager picks favorite stocks for 2024

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