Tag: Julia Belluz

journalismknowledge translationpublic healthscience & technology

The Power, Peril and Promise of Health Journalism

Online Prescription Concept

The Toronto Star, Canada’s most widely read newspaper known for its investigative reporting gifted anti-vaccination audiences armament by using poor science to point to a spurious connection between an HPV vaccine and illness. The issue points to journalism’s power to shape the discourse of health issues and it points to the power, promise and peril associated with good (and not so good) science reporting. 

With great power comes great responsibility – Uncle Ben, Spiderman

It started with a story

On Thursday February 5th, 2015 the Toronto Star, Canada’s most widely read newspaper that has a reputation for solid investigative journalism, published an story that connected the experience of young girls and negative health effects with the receiving the Gardasil HPV vaccine. The story was immediately and widely criticized by experienced science journalists and health professionals alike, who argued that it was based on terribly flawed science.

The Toronto Star’s reaction was to defend itself, arguing in many different fora that they indeed mentioned that there was little scientific evidence that supported the link between the vaccine and the negative health effects being discussed in the article. The problem is that these links are buried deep in the article and certainly are not its focus: the hypothesized harms are.

Two days later, the Star published a follow-up op-ed letter which was authored by two health professionals and co-signed / supported by dozens of Toronto’s leading physicians condemning the original article. However, by that time the damage is likely to have been done and one more bit contribution to the fictitious ‘evidence’ for vaccine harms had been added to the anti-vaccine movement’s war chest.

Perpetuating harm

This matter of poor reporting is not a trivial issue. The fraudulent science performed by Andrew Wakefield linking autism to vaccines helped spur an evidence-thin anti-vaccination movement. Today, we are seeing the resurgence of diseases once thought to be eliminated in North America (like measles) because so many people are not having their children vaccinated. Jenny McCarthy is among the celebrities who have taken up the cause of anti-vaccination and has written about and spoken at length about what she sees as the connection between autism and vaccines, using her son’s experience as an ‘example’. Oprah Winfrey, perhaps unwittingly, gave McCarthy a platform to speak about her beliefs on her show offering wider possible credibility to something that has been thoroughly discredited in the scientific literature (PDF).

For the Toronto Star, it was bad enough that the story was published — and is now online, likely for all time in various forms thanks to the Web — but what made it worse was that the Star was so vigorous in its defence of it, unwilling or unable to recognize their role in public health. Medical evidence champion, author, physician and columnist Ben Goldacre was among the many who counter-attacked, pointing to what he called The Star’s ‘smear campaign‘ against the story’s critics.

For an interesting discussion of the issue of just how the Star got it wrong, listen to Vox health reporter Julia Belluz, interviewed on the CBC’s radio show The Current. Belluz, a past MIT Knight Journalism Fellow, is one of a dwindling number of journalists who understand the practice of reporting, science, and medicine and wrote a stellar critique of the Toronto Star article, but as importantly makes the case for why there is a need for specialized, trained, supported journalists out there doing this kind of work.

…and health

I’ve argued in the past that journalism is very much a pillar of public health. When it fails, so does public health. Journalism is not and should not be an arm of public health for the very independence that good, professional journalism strives to maintain is a reason it’s often called the fourth estate, keeping governments and other forces in check to ensure they are not abusive. Yet, that distance is also what makes it a part of public health. Public health is better for journalism and journalism certainly can benefit from health stories as they continue to be popular and sought after by readers.

As a group, scientists and many clinicians are not great at communicating what they do, why their research is important to others outside their field, and what the implications of their findings are for the public and science as a whole. Some are, most are not. It’s for this reason that the entire sub-field of health sciences focused on knowledge translation, exchange and mobilization has emerged. Just as we value the ability of a graphic designer to make visuals come alive, so too have we learned to value those with the skills to communicate information well and that is what journalists are trained and paid to do. They are a big part of this process, or at least should be.

Healthy journalism, healthy science, healthy people

Science journalism is too important to be ignored. There is much skepticism of journalists by scientists and clinicians and indeed, as the Toronto Star shows, journalists sometimes get things wrong. But its one thing to get it wrong through errors of judgement or interpretation it’s quite another to get things wrong by design. The Toronto Star has some good health reporters, but they weren’t the ones on this story. Nor did they bring in the health reporters to consult on this or other health professionals prior to publication– at least as far as one can tell.

The importance to the public’s health of good reporting requires that health and science journalists have more than a rudimentary knowledge of the topics they are covering. What’s strange is how we understand this with our sports reporting, weather forecasts and foreign correspondents. You wouldn’t watch someone who has little understanding of a sport covering it in depth, would you? It’s one thing to read scores, it’s another to provide investigative and deep coverage of a game if you don’t know the players, the rules, the criteria for quality and success and so forth.

Why do we do this with health journalism and science?

Yet, journalism is under pressure and no doubt the Toronto Star, for whatever genuine contrition they experience from what happened, have to like that they are being talked about. The reason is that journalism is under threat for market reasons, the Internet and the changing ways we get our news. It is, as Jürgen Krönig wrote way back in 2004, “A crisis of the Fourth Estate”. That crisis is only getting worse.

As anyone interested in public health, we need to take actions to ensure that the fourth estate is protected, supported and not ignored. Our health might just depend on it.

Image: iStockphoto, used under licence.

journalismknowledge translationpublic healthsocial media

Sane truths in Crazy Town: What Rob Ford’s story offers politics, science and journalism

Crazy Town

Crazy Town

A new book about Toronto’s (in)famous mayor reveals a great deal more than just a story of man known more for what he smokes and says than his governance, to what kind of world we want to live in. Robyn Doolittle’s ‘Crazy Town’ goes well beyond documenting one man’s troubling behaviour and its place in the city he governs to a broader understanding of politics, science and journalism in a day when all three are under threat. 

Toronto has been my adopted home for most of last 15 years. It’s dynamic, clean, safe and North America’s 4th largest city. Toronto is a place of tremendous ethno-cultural diversity (near 1/2 of the population is foreign-born), spectacular food, a thriving arts and culture scene, great universities, home to sports fans with a near pathological faith in their hockey team, and — even with all of that — it’s sometimes a bit dull (and that’s OK).

That last bit about being dull changed dramatically after 2010 and that has to do with one man: Rob Ford, our mayor. Maybe you’ve heard of him.

The narrative arc

Toronto Star reporter Robyn Doolittle was literally at the front line of journalists covering Toronto’s Chief Magistrate and recently published a book on that experience and the story behind the story called Crazy Town. It’s a terrific book that documents the almost surreal events and people behind Rob Ford’s rise to power and current reign as one of the world’s most well-known mayors. It’s a rare work that manages to marry true crime, history, political intrigue, suspense, biography, and a journalism textbook together. I devoured it.

Yet, as a resident and politics fan I was amazed by what I read. I already knew most of the general details of what came out in the book (although chapter 12 is a complete shocker) because I lived through this news. Yet, it was only seeing all of this painted in one long narrative piece that it took a new life and in doing so brought me to a deeper understanding of many issues I’d thought I knew. The reason is largely the narrative arc that only a book (or long-form journalism) can offer.

On the surface, one could argue that what Doolittle did was piece together hundreds of stories she and others had written and compile them with a few additional quips to produce a compendium of Rob Ford’s life in the public’s eye. That in itself is a lot of work, but it doesn’t tell those who were paying attention to the story anything new. Yet, with each story that came out the backstory shows how what was reported — and picked up by others, reacted to, or ignored — was as important as what was learned about the subject and his environment. We read about how — not unlike with police work — the public is exposed to the “facts” but not how the authors chose to disclose (or not) those details and why.

When one considers what these ‘facts’ and the stories behind them entail, it is hard not to see some parallels between the world of political reporting at city hall and the world of science, social innovation, health promotion and policy that I live (and have lived) in. Crazy Town has many lessons for those not interested in Toronto, Rob Ford, politics, journalism or science, yet it is through all of those topics that such lessons are learned. The latter three stand out.

Politics

Rob Ford has defied nearly any explanation of how he has managed to maintain some form of support above 30% (as in, 3/10 polled would vote for him if the election was today). The best I’ve read is from former Canadian hockey legend, educator and parliamentarian Ken Dryden who wrote in the Globe and Mail newspaper about how Rob Ford has found a way to be visible and get the simple things done when other politicians get mired in complexity. He channels people’s frustrations and he makes his constituents feel listened to.

Doolittle’s treatment of Ford – despite the despicable treatment he’s given her, the Toronto Star and journalists overall — is fair and, in many cases, almost flattering when it comes to politics. Ford and his team have, despite appearances on the personal side of things, been very consistent and kept things simple. While Einstein might have challenged that Ford’s simple is too much so, there are lessons for all of us in this.

For those who deal in complexity, which is most human systems, it is easy to get mired in the details and interactions. Ford was steadfast in his over-arching narrative of “the gravy train” and that resonated with people. There is no reason why any other politician couldn’t have picked something similar to drive as their narrative and done much more good than Ford has, but they didn’t.

Ford made himself visible to those who mattered most: his constituents. And they have rewarded him with support.

How often do health care officials, educators, or policy leaders spend time with their key ‘constituents’ in settings that are natural to that audience? Politicos might challenge Ford’s proclivity for door-knocking and BBQ’s in an age of big data analytics, but that resonates with people. Why don’t more leaders get away from staid events in hotel ballrooms, well-crafted PR events, or their own offices to meet with their audiences where they live, work and play?

Good designers know that the design is only good if it gets used in the environment it was intended for and the only way to know that is to go into those environments. Ford knows this.

Science

To be fair, science is my term not Doolittles, but the term ‘evidence’ is one that links my term and her experience as a reporter. By science, I am talking capital ‘S’ science — the enterprise of scientific work as well as the activity.

What follows from the narrative arc that Ford delivered was the ability to frame the evidence held against him. He is masterful at reframing the arguments and keeping people focused on the messages that fit his ongoing  construction of a narrative. For a while, he was able to keep people talking about whether or not he smoked crack or drank alcohol excessively — two very serious issues — in a speculative way and away from the evidence he associated with drug dealers, violent criminals, and lied repeatedly to the press. He still does this.

In 2012 and 2013 the city spent time debating the minutiae of the law around whether or not he was in violation of conflict of interest. Lost in much of this debate was the larger pattern of Rob Ford consistently getting into trouble over all kinds of issues, big and small and how that wasn’t appropriate for any leader, political or not. Recently, Ford was in the news for being drunk in public and speaking in some faux Jamaican patois to customers at a local restaurant.

The issue as discussed in the media was the alcohol and the patois, not the fact that this is a man who, when under the public’s eye, has the judgement to: 1) get drunk in a public place 2) with the person who is accused of extortion related to the infamous crack video, 3) and then get up in front of everyone at the front of the restaurant to make a big, public proclamation.

Two weeks later, at a funeral for his friend’s mother in Vancouver, Ford decides to go to a crowded bar on a weekend night where nearly every young person there has a mobile phone and many proceed to take pictures of him or with him .

This is exactly how scientists and policy makers often behave. The intense focus on the small details leaves out the questions of relevancy and the bigger picture of what the point of the science is. Too often we get sidetracked with specifics and lose sight of a much larger set of issues.

For example, we’ll spend forever arguing the hypothetical possibility that someone might hack into an eHealth record as an argument for not allowing for easy portability and accessibility to that information (despite the fact that it can save lives, engage people, and that banks have been doing it with our life savings and credit for 20 years). (* Note that the details in science can matter a great deal, but just like walking and chewing gum, we can fret details in science and think of the big picture at the same time)

So far, people are willing to pay attention to Ford’s bigger message. Perhaps we need to consider what the bigger message is in our other enterprises and then worry about the details.

Journalism

I love ‘behind the scenes’ looks and this book provides lot to consider when thinking about how journalism is done, particularly that of the investigative kind. Doolittle has been steadfast that Crazy Town might have her name on the cover, but the investigative work that contributed to it was part of a huge team of journalists from the Toronto Star, the Globe and Mail and other outlets. Indeed, it takes a team and the kind of institutional support that the Star has put behind Doolittle.

Alas, this may be an exception. Many journalistic outlets are imploding due to poor management, change of readership habits, shifting business models, and also the public’s unwillingness to pay for things they value online. This last point is the one that we often let skate by in our discussions about media and one that Jaron Lanier has exposed as a major flaw in the modern Internet age.

Just this past week, web pioneer Mark Andreessen speculated on the future of media and — as many who have a stake in a faster, less in depth form of media often do — completely overlooked the role of the media as the a key role in communicating and uncovering key stories for society. To him, the model is dying. Maybe the business model is problematic, but unlike Andreessen I see a big need for journalism for society and as a model for science and health.

In health and science reporting, we are at great risk of losing voices like Andre Picard, Julia Belluz, Carly Weeks and Helen Branswell who have all brought to light many key issues that public health, healthcare and policy seem to forget, hide, complicate, or deny from emergent infectious disease patterns to drug regulation policy and practice.

Would we know about Rob Ford’s fitness for mayoralty if we didn’t have the Star? Would we be talking about the perversion of science and pharmaceuticals were it not for people like Ben Goldacre in the UK? What kind of knowledge would the world have about the NSA if Edward Snowden was a lone blogger and didn’t have The Guardian or New York Times to advance his disclosure? Crazy Town makes you realize what a debt we are owed to modern investigative journalism, journalists and those that support them (and are willing to pay for their products).

A bigger story

Crazy Town ends with the acknowledgement that there is much more of this story yet to be written. This is an election year and Rob Ford is one of the few who have already filed their papers to run for office again.

Crazy Town could have been told in 10,000 tweets, videos and Instagram pics. But it would have missed the point. The book is an argument for why in-depth journalism is needed and why — journalism, science, and politics — all often require a longer narrative arc to understand the bigger picture. Bigger stories don’t fit into a social media world, even if that very social media is part of the story itself.

The book is a great read whether you’re in Toronto, Ontario; Calgary, Alberta;  Madison, Wisconsin; or Phnom Phen, Cambodia. It’s a story as much about a man and a city as it is about ourselves and the world we live in. Read that way, you’ll find that not only is there more to tell of Rob Ford, there is a much bigger story to tell all around us.

knowledge translationpublic healthscience & technologysocial media

The Fourth Estate of Health and Medicine

Who Will Hold Evidence To Account?

Journalists occupy an important, yet often unacknowledged, role in the health system by providing a dispassionate account of the system’s strengths, weaknesses, and opportunities to the public. It is through journalists that much of the research we scientists and practitioners produce gets communicated to the audiences likely to use them. This fourth estate is also a  place where hard questions can be asked and answered, holding governments, business and the health system itself to account because journalists operate apart from this space, unlike scientists and clinicians. We are at risk of losing this and it’s time to consider what that means for our collective health and wellbeing.

Disrupted Media

The news business is going through a massive upheaval, part of a larger overall disruption in media. Many newspapers are reducing the size of their print offerings, publishing less frequently or ceasing operations altogether.

This reduction in the capacity and size of the fourth estate begs two simple questions: Who will hold health scientists, clinicians, pharmaceutical companies, health product manufacturers, and policy makers to account? and who will tell the stories of science, health and medicine in public?

While we have some activist academics doing great work on influencing broader audiences like policy makers, they are exceptions not the norm. Stanton Glantz, a major tobacco control champion from UCSF who taken to blogging as a means of communicating to professionals and the public directly, is one of these such people. But Stan is atypical and holds a tenured position at a major university, something he’s acknowledged protected him when pursuing issues of evidence withholding from the tobacco companies in the 1990’s and beyond. Many faculty (particularly younger ones) are not this secure and even fewer independently funded scientists are. Academia is changing and not in ways that favour security and stability, which has implications for the kind of stories that get told.

Journalists have traditionally relied on protection from their publisher or producer under the name of journalistic freedom (the fourth estate) as a key pillar of their profession. It’s hard to imagine the Watergate scandal coming to light had Bob Woodward, Carl Bernstein and the other reporters working for the Washington Post, Time Magazine and New York Times not had the resources, stability and support provided by their newspapers . But what happens when these resources are no longer available or there are no institutions to support journalists in serving as watchdogs to hold people or institutions to account for what they do and don’t do?

Are ‘Monkeys in Coats’ A Healthy Story?

It’s been suggested that the Internet will take care of this. Citizen journalists, armed with camera-laden handsets connected to social media will fill the news gap. For example, it was citizens, not journalists, who first captured the story of Darwin the monkey, dressed in a shearling coat, walking around an Ikea parking lot in Toronto that went viral on a global scale on December 10, 2012. This is great for those interested in simian fashions and retail adventures, but the reason it was captured was because the story was obvious and in the face (or at the ankles) of those who told it. (For those of you not familiar with Toronto, coat-wearing monkeys are not typically seen at shopping centres or anywhere around town for that matter.)

Health and medicine is not the same as monkeys wearing coats (no matter what kind of joke you want to make). There is nuance, debate and reason that requires sustained attention and focus that someone with an iPhone and Twitter account is less likely to convey. Reasoned arguments for citizen journalism’s potential suggest it can complement the work of traditional journalism, not replace it. Yet, is this belief in one form (citizen journalism) undermining support for the other (traditional journalism) and serving as a fix that ultimately fails? If free-and-easy content is available, how likely are publishers willing to pay for professional work? Particularly if the choice of stories of one group (e.g., monkeys in coats) are more likely to garner the kind of attention that drives advertising than that of another (e.g., health care financing). Only one of these stories will impact our collective health.

Why does this matter? Trained journalists are required to be good communicators to a broad audience, scientists are not. Clinicians are slightly better, but decades of research has shown it is still highly problematic across areas of practice. This will not be solved overnight, if at all. Scientists and clinicians have told me they are already burdened with enough job expectations and adding knowledge translation skills to that list is asking too much.

As I have argued previously, there is a valued place for synthetics in research: those are who are good at taking ideas and weaving them together into an accessible narrative. Journalists are ideally suited to play or support this role. They do the job that many scientists can’t or won’t do and have better to tools, skills and strategies to do it. They write in a style that is suited to broad audiences in a way that suit those audiences’ needs, not what funders, disciplinary traditions, universities, or scientific peers demand (without evidence that those methods of communication are effective). There are reasons why journalists assess the reach of their work in the thousands and social scientists in the dozens (by citations in their field of practice).

Going Deeper to See Clearer

Although we have more information about health available to us than ever before, this may not be healthy for patients. The potential for those uninformed about medical diagnostics, evidence, and the nature of health itself to make poor choices based on incomplete, incorrect or overwhelming information is high. Further, without the kind of dispassionate examination of evidence in a synthetic manner that is tied to the way in which that evidence is expressed in the world through public opinion, policy making and healthcare practices, we lose a major accountability mechanism and means of informing public discourse.

In October I co-delivered a workshop on health evidence for students at the University of Toronto with the 2012 Hancock Lecturer and journalist Julia Belluz. Julia writes the Science-ish blog for Macleans Magazine and is an Associate Editor with the Medical Post. Julia`s lecture was on the role that social media plays in our health system and how its power to leverage the attention of the masses — for good and ill — is shaping the public understanding of health and medicine often in the absence of evidence for effects of conditions, processes, and practice. The lecture is summarized online on Science-ish beginning here.

Reading through the lecture notes one sees a depth of study that would be unlikely to be found anywhere within the formal health system. The reasons are that it blends evidence with commentary, observation with carefully selected sources, and takes a perspective that seeks to inform a wide, not narrow audience in both practical and intellectually stimulating ways. Taken together, this is a collection of activities that are not within the scope of practice for scientists and practitioners. There are reasons why the greatest contributors to public discourse on many scientific issues has come from journalists, not the scientists who generate the research. They tell the story better.

Malcolm Gladwell, Steven Johnson, Mitch Waldrop, Julia Belluz, Andre Picard and others are a big part of the reasons most of the those who vote to support funding of science, who donate to research-related causes, and fight for policies to keep us healthy know of the research that backs those ideas up.

Imperfect as journalism is, it serves the public when done with integrity. It’s worth spending some time considering what can be done to support the fourth estate so it supports us.

Photo credit: DBduo Photography on Flickr used under Creative Commons Licence.