Tag: medicine

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.

eHealthinnovationpublic healthsocial innovationsocial media

Seeing the lights in research with our heads in the clouds

Lights in the clouds

Lights in the clouds

Some fields stagnate because they fail to take the bold steps into the unknown by taking chances and proposing new ideas because the research isn’t there to guide it while social innovation has a different twist on the problem: it has plenty of ideas, but little research to support those ideas. Unless the ideas and research match up it is unlikely that either area will develop.

 

Social innovation is a space that doesn’t lack for dreamers and big ideas. That is a refreshing change of pace from the world of public policy and public health that are well-populated by those who feel chained down to what’s been done as the entry to doing something new (which is oxymoronic when you think about it).

Fields like public health and medicine are well-served by looking to the evidence for guidance on many issues, but an over-reliance on using past-practice and known facts as the means to guide present action seriously limits the capacity to innovate in spaces where evidence doesn’t exist and may not be forthcoming.

The example of eHealth, social media and healthcare

A good example of this is in the area of eHealth. While social media has been part of the online communication landscape for nearly a decade (or longer, depending on your definition of the term), there has been sparse use of these tools and approaches within the health domain by professionals until recently. Even today, the presence of professional voices on health matters is small within the larger discourse on health and wellbeing online.

One big reason for this — and there are many — is that health systems are not prepared for the complexity that social media introduces.  Julia Belluz’s series on social media and healthcare at Macleans provides among the best examples of the gaps that social media exposes and widens within the overlapping domains of health, medicine, media and the public good. Yet, such problems with social media do not change the fact that it is here, used by billions worldwide, and increasingly becoming a vehicle for discussing health matters from heart disease to weight management to smoking cessation.

Social innovation and research

Social innovation has the opposite problem. Vision, ideas, excitement and energy for new ideas abound within this world, yet the evidence generation to support it, improve upon it and foster further design innovations is notably absent (or invisible). Evaluation is not a word that is used much within this sphere nor is the term research applied — at least with the rigour we see in the health field.

In late May I participated in a one-day event in Vancouver on social innovation research in Vancouver organized by the folks at Simon Fraser University’s Public Square program and Nesta as part of the Social Innovation Week Canada events.Part of the rationale for the event can be explained by Nesta on its website promoting an earlier Social Frontiers event in the UK:

Despite thriving practitioner networks and a real commitment from policymakers and foundations to support social innovation, empirical and theoretical knowledge of social innovation remains uneven.

Not only is this research base uneven, it’s largely invisible. I choose to use the word invisible because it’s unclear how much research there is as it simply isn’t made visible. Part of the problem, clearly evident at the Vancouver event, is that social innovation appears to be still at a place where it’s busy showing people it exists. This is certainly an important first step, but as this was an event devoted to social innovation research it struck me that most attendees ought to have already been convinced of that.

Missing was language around t-scores, inter-relater reliability, theoretical saturation, cost-benefit analysis, systematic reviews and confidence intervals – the kind of terms you’d expect to hear at a research conference. Instead, words like “impact” and “scale” were thrown out with little data to back them up.

Bring us down to earth to better appreciate the stars

It seems that social innovation is a field that is still in the clouds with possibility and hasn’t turned the lights on bright enough to bring it back down to earth. That’s the unfortunate part of research: it can be a real buzz-kill. Research and evaluation can confirm what it means for something to ‘work’ and forces us to be clear on terms like ‘scale’ and ‘impact’ and this very often will mean that many of the high-profile, well-intentioned initiatives will prove to be less impactful than we hope for.

Yet, this attention to detail and increase in the quality and scope of research will also raise the overall profile of the field and the quality and scope of the social innovations themselves. That is real impact.

By bringing us down to earth with better quality and more sophisticated research presented and discussed in public and with each other we offer the best opportunity for social innovation to truly innovate and, in doing so, reach beyond the clouds and into the stars.

Photo credit: Lightbulb Clouds by MyCatkins used under Creative Commons License. Thanks Mike for sharing!

behaviour changeeHealthhealth promotioninnovationpublic health

Social Media and Health: Leaders(hip) and Followers(hip)

Social media is finally catching on with healthcare, public health, and  health promotion. With a few recent articles published in the academic literature to rest on, academic health sciences has finally (and I might argue, begrudgingly) conceded that 900+ million users and $100B valuations (Facebook), and thousands of messages exchanged every milisecond (microblogs like Twitter and Sina Wiebo) might have some value for the public beyond entertainment.

If you note how long it took the health sector to start using the telephone as a serious means of engaging their patients or the public, this is lightning-quick adoption. Still, the barriers to adoption are high and the approach to using the technology is scattered. Indeed, just like the start of Internet-delivered telehealth (or cybermedicine (PDF), which has now evolved into eHealth), there is a mad rush to get liked, followed or some other metrics that most health professionals barely understand.

And that is part of the problem.

Meaningful Social Media Metrics

What is a meaningful metric for social media and health? A recently published article in Health Promotion Practice suggested four metrics that are taken from social marketing and applied to social media. These Key Performance Indicators (KPI’s) are:

  • Insights (consumer feedback)
  • Exposure (media impressions, visits, views, etc..)
  • Reach (# people who connect to the social media application)
  • Engagement (level of interaction with the content)

These are reasonable, but to to the uninitiated I would suggest a few words of caution and commentary to this list.

Firstly, the insights suggested by Neiger and colleagues “can be derived from practices such as sentiment analysis or data mining that uses algorithms to extract consumer attitudes and other perspectives on a particular topic” (p.162). While not incorrect, this makes the job sound relatively simple and it is not. Qualitative analysis + quantitative metrics such as those derived from data mining are key. Context counts immeasurably in social media use. It’s only in situations where social media is used as a broadcasting tool that gross measures of likes and sentiment analysis work with little qualification.

Even that is problematic. Counts of ‘likes’, ‘visits’, ‘follows’ and such are highly problematic and can be easily gamed. I am ‘followed’ on Twitter by people who have tens of thousands of followers, yet virtually no presence online. Most often they are from marketing fields where the standard practice is to always follow back those who follow you. Do this enough and pretty quickly you, too can have 23,000 followers and follow 20,000 more. This is meaningless from the perspective of developing relationships.

Engagement is the most meaningful of these metrics and the hardest to fully apply. This category gets us to consider the difference between “OMG! AWESOME!” and “That last post made me think of this situation [described here] and I suggest you read [reference] here for more” as comments. Without understanding the context in which these are made within the post, between posts (temporally and sequentially), and in relation to a larger social and informational context, simple text analysis won’t do.

Social Media Evidence: Problems and More Problems

One of the objections to the use of social media by some is that it is not evidence-based. To that extent I would largely agree that this is the case, but then we’ve been jumping out of airplanes with parachutes despite any randomized controlled trial to prove their worth.

Another article in Health Promotion Practice in 2011 highlights potential applications for social media and behaviour change without drawing on specific examples from the literature, but rather on theoretical and rhetorical arguments. An article published in the latest issue of Perspectives on Psychological Science highlights the current state of research on Facebook, which is timely given that its IPO is set for today. That review by Wilson and colleagues illustrates the largely descriptive nature of the field and offers some insight on to the motivation of Facebook users and their online activities, but rather little in what Facebook does to promote active change in individuals and communities when they leave the platform.

The answer to whether social media like platforms such as Facebook ‘work’ as methods of promoting change is simply: we don’t know.

Does social media provide support to people? Yes. Does it inform them? Yes to that too. Does that information produce something other than passive activity on the topic? We don’t know.

In order to answer these questions, health sciences professionals, evaluators, and tech developers need to consider not just followership, but leadership. In this respect, it means creating changes to the way we gather evidence, the tools and methods we use to analyse data, and the organizational structures necessary to support the kind of real-time, rapid cycle evaluation and developmental design work necessary to make programs and evidence relevant to a changing context.

As Facebook launches into its new role as a public company it is almost assured to be introducing new innovations at a rapid pace to ensure that investor expectations (which are enormous) are met. This means that today’s Facebook will not be next month’s. Having funding mechanisms, review and approval mechanisms, a staff trained and oriented to rapid response research, and an overall organizational support system for innovation is the key.

Right now, we are a long way from that. Hospitals are very large, risk averse organizations; public health units are not much different. They both operate in a command-and-control environment suited for complicated, not complex informational and social environments. Social media is largely within the latter.

Systems thinking, design thinking, developmental evaluation, creativity, networks and innovation: these are the keywords for health in the coming years. They are as author Eric Topol calls the dawning of the creative destruction of medicine.

The public is already using social media for health and now the time has come for health (care, promotion and protection) systems to get on board and make the changes necessary to join them.