What does WikiLeaks say about healthcare reporting?

What would help the media to report more effectively about issues related to healthcare safety and quality?

This was the topic of a presentation I gave this morning to a National Forum on Safety and Quality in Healthcare in Canberra. In case it’s of wider interest, here’s the presentation (with powerpoints incorporated).

You will see that it includes a few crowdsourcing requests for help with Croakey projects – please get in touch if you’re interested in contributing to any of them….

***

I plan to speak briefly about: the changing media landscape, and what sort of help we need to help produced a more informed and engaged public.

THE CHANGING MEDIA LANDSCAPE

1. The online revolution

This is a screenshot from Wikileaks, which as I’m sure you know, last week released “the largest classified military leak in history”.

It’s just to put discussions about healthcare safety and quality and the media in a broader context….

The world is changing dramatically. Norms and expectations around access to information are changing rapidly.

WikiLeaks describes itself as a not-for-profit media organisation. “Could become as important a journalistic tool as the Freedom of Information Act.” – Time Magazine

***

2. From “About Wikileaks”

Publishing improves transparency, and this transparency creates a better society for all people. Better scrutiny leads to reduced corruption and stronger democracies in all society’s institutions, including government, corporations and other organisations. A healthy, vibrant and inquisitive journalistic media plays a vital role in achieving these goals. We are part of that media. (Wikileaks)

And more from About Wikileaks: “Our goal is to bring important news and information to the public. We provide an innovative, secure and anonymous way for sources to leak information to our journalists.

“One of our most important activities is to publish original source material alongside our news stories so readers and historians alike can see evidence of the truth. We are a young organisation that has grown very quickly, relying on a network of dedicated volunteers around the globe.

“In the years leading up to the founding of WikiLeaks in 2007, we observed the world’s publishing media becoming less independent and far less willing to ask the hard questions of government, corporations and other institutions.

“WikiLeaks has provided a new model of journalism.

“Because we are not motivated by making a profit, we work cooperatively with other publishing and media organisations around the globe, instead of following the traditional model of competing with other media. We don’t hoard our information. We believe the world’s media should work together as much as possible to bring stories to a broad international readership.”

Wikileaks is a controversial organisation – a Fox New editorial has reportedly said its proprietors should be treated as “enemy combatants” – but that explanation from its website raises some broader themes about the changing nature of the media landscape that may be relevant to discussions about reporting of health care safety.

These include:

• there is a move to combine data and journalism – to bring together the geeks and the story-tellers (for eg, this recent conference in Amsterdam on data-driven journalism)

• enforced transparency (organisations that are not transparent may have it forced upon them)

• the power of collaboration – between media organisations and audiences – and the volunteer or gift workforce

• notions of who or what is a journalist, a publisher or a media organisation are being transformed.

***

3. The power shift

The media world today is a shifted space. People are connected horizontally to one another as effectively as they are connected up to Big Media; and they have the powers of production in their hands.

– quote from Jay Rosen, a US journalism academic and blogger

What this all means is that a seismic power shift is occurring in the media landscape.

Jay Rosen is famous for, amongst other things, coining the phrase in 2006: “the people formerly known as the audience”. He was referring to the fact that these days the audience are often the content makers.

In that post he wrote: “The people formerly known as the audience wish to inform media people of our existence, and of a shift in power…  Think of passengers on your ship who got a boat of their own. The writing readers. The viewers who picked up a camera. The formerly atomized listeners who with modest effort can connect with each other and gain the means to speak— to the world, as it were.”

Rosen has also spoken of the opportunity for people like me to become “the journalists formerly known as the media”, with a somewhat different role to that traditionally taken on by many journalists and media organisations.

***

4. The changing role of people like me

It is the job of journalists to describe the world in a way that helps us participate in all life—political, local, civic, cultural, etc.

This is actually a quote from a blog by a writer at The Economist. The author was commenting on a Jay Rosen post.

Personally, I much prefer this to the job description of: selling newspapers, winning ratings and beating my competition to a page one story that is not really much of a story.

***

5. Twitter – creating networks and participation

This is a screenshot of tweets about this Forum. For those who aren’t already using Twitter, I highly recommend it – it has become my major source of information and news, and is also a very useful tool for creating information exchange networks and participation in discussions. And you can also have a bit of fun, which is not a bad thing.

Coincidentally, it was from Twitter this morning that I learnt of The Australian’s disparaging take on Twitter.  Some nice circular irony there…

***

6. Croakey – hybrid vigour

Please excuse the title, it reflects not only my studies in ag science many years ago, but also the unusual collaboration between public health and journalism that is Croakey.

The goals of the Crikey Health and Medical Panel and Croakey are to prod public health minded people to engage in public debate, to foster a broader, more open and honest public debate about health, to encourage a focus on under-served areas and issues, and to stir the pot!

For the past year, Croakey has been funded by a consortium of health organisations, including the

• The Public Health Association of Australia

• VicHealth

• The Epidemiology Unit of the Victorian Infectious Diseases Reference Laboratory

• The Brain and Mind Research Institute at the University of Sydney

• The Australian Health Promotion Association

• The UNSW Research Centre for Primary Health Care & Equity

• The Australian Healthcare Reform Alliance.

The funding equates to $1,000 per month – so Croakey is not going to rival News Corp any time soon. I should also add that it is supported by Crikey, which provides technical, legal and editorial backup.

This hybrid creature is an unusual beast by Australian standards, but more and more arrangements like this are developing in the US in particular, where not-for-profit journalism is developing as the traditional business model that has underpinned journalism is collapsing.

For example, a Californian health charity is funding a journalist on a local newspaper to cover community health. Editorially, the journalist answers to the editor, not the funder. It’s a variation on the traditional model of advertising-funded journalism, you might say.

***

7. YouCommNews

Another example of the changing media landscape…This recently launched website is an experiment in people-powered news. What stories will the public pitch and fund?

This is the headline of a story pitch that went up on the website yesterday. It’s looking for a journalist to take it on. And then we shall see if there is enough interest in this story from the public to get it funded.

YouCommNews is one of the initiatives of the Public Interest Journalism Foundation, based at Swinburne University. The Foundation is a collaboration between journalists, academics, and the public.

***

WHAT MIGHT HELP PRODUCE A MORE INFORMED AND ENGAGED PUBLIC

8. Relating to complexity

This is an example of a story about the mortgage crisis in the US, an issue which has some parallels to healthcare safety and quality.

I first heard about the story from Jay Rosen who spoke at a journalists’ conference in Sydney a few months ago. He gave a personal anecdote about the mortgage crisis in the US; because he didn’t really understand why it arose and all the complexities involved, he tended to switch off when he heard another news story about it. He didn’t engage because the story lacked meaning.

That changed for him when this story was published. It’s a one-hour explainer on the mortgage crisis, the product of an unusual collaboration between different media organisations.

Rosen says: “It’s probably the best work of explanatory journalism I have ever heard.”

Going in to the program, he didn’t understand the mortgage mess one bit.

Coming out of the program, he says: “I understood the complete scam: what happened, why it happened, and why I should care. I had a good sense of the motivations and situations of players all down the line. Civic mastery was mine over a complex story, dense with technical terms, unfolding on many fronts and different levels, with no heroes. And the villains were mostly abstractions!”

After hearing this report, Rosen became a customer for ongoing news about the mortgage mess and the credit crisis that developed from it.

He says: “It was a successful act of explanation that put me in the market for information.”

There are some important lessons there for those who would like to see a more useful and informed public debate about healthcare safety and quality issues.

How could you help the media do a similar job in explaining the complexities of safety and quality issues, in a way that helps engage our audiences at a level beyond the traditional “shock horror headlines” that tend to dominate reporting in this area.

One suggestion Rosen gave was to have explanatory backgrounders that journalists could link to from their news stories to help “create a scaffolding of understanding”.

This is something I’d like to do at Croakey for a range of health policy issues, and I’d welcome the help of any in this audience with ideas for what these could cover and also assistance in creating them.

***

9. Roadmap to understanding

This is a resource produced by the Association of Health Care Journalists in the US, of which I am a member. It gives an overview of the different sources of data about quality and safety in the US, and their strengths and limitations.

It would be terrific to see these sort of resources in Australia – a central portal to bring together the various sources of information, and explaining how journalists and other content makers could usefully dig into them, whether to create stories for very local or national audiences.

So what are some other ways you could help?

So much of the focus in the safety and quality area has traditionally been on hospitals. No doubt it’s one of the reasons why hospitals dominate the headlines and therefore attract so much of the attention of politicians and policy makers.

What about primary health care? What are the safety and quality stories there we should be investigating and telling?

Perhaps linked to a resource like the road map, there could be tips for the investigations that journalists should be doing related to the safety and quality of health care.

For example, I’d love to have a post for Croakey by someone from this field listing the top ten under-done stories when it comes to safety and quality.

I’d hope that one of these might canvass the implications of the safety and quality of push for equity in health care. As a by the by, also found on Twitter this morning was news that the Robert Wood Johnson Foundation in the US had released a new report looking at such issues, called “What’s Quality without Equality?”

Other questions for you:

How can social media be used to help engage patients and the wider community in contributing to a safer, better health care system?

What can you or your organisation do to encourage and support data-driven journalism?

Perhaps, you could even start your own online newspaper and employ some journalists to do journalism, NOT PR.

***

10. How else can you help? Consider the classic qualities of the ute

Recently I was asked what were the qualities of my ideal public health researcher – from the perspective of a journalist. When I think about it, these are the qualities I value in any source. If you want to try and help contribute to public understanding and engagement around safety and quality issues, perhaps you could try becoming a journalist’s ute.

***

11. My perfect source: THE UTE

(not necessarily in order of priority)

Timely (they understand the importance of timing in news, and respond in a timely fashion)
Honest (there is too little of this in public debate)
Engage (they value the importance of engaging in public debate)

Unafraid (prepared to speak truth to power, tell it as it is)
Trust (this often evolves over time, the importance of relationships)
Evidence-based (they value reliable evidence)

***

12. Pro publica investigation

But perhaps my ute should be carrying a P-plate. One other quality not mentioned in that list – because it wouldn’t fit neatly into THE UTE – is public interest. I value sources who are motivated by the public interest – not those flogging a commercial, professional, institutional or political barrow.

Does everyone know about the Pro Publica investigation published last week in the US, involving several media organisations? (note to readers: the answer was a resounding NO)

ProPublica created a “dollars for docs” database that represents the most accessible accounting yet of pharma payments to doctors in the US. Compiled from disclosures by seven companies, the database covers $257.8 million in payouts since 2009 for speaking, consulting and other duties.

Although these companies have posted payments on their websites — some as a result of legal settlements — they make it difficult to spot trends or even learn who has earned the most. ProPublica combined the data and identified the highest-paid doctors, then checked their credentials and disciplinary records.

They uncovered hundreds of doctors on company payrolls who had been accused of professional misconduct, were disciplined by state boards or lacked credentials as researchers or specialists.

If you haven’t read the investigation, I do recommend it. You will see that it has a rather large bearing on safety and quality issues.

***

13. In other recent news

This is an organisation called HealthGrades, which since 1998 has studied and measured the quality of care in the US’s 5,000 hospitals and published the results of its annual research on the Web to assist consumers in choosing a hospital.

Its latest report, released recently, found that while US hospitals are improving overall, the gap between the best and worst hospitals continues to be substantial. The best-performing hospitals have lower mortality rates despite having higher acuity patients.  Large gaps persist between the “best” and the “worst” hospitals across all procedures and diagnoses studied. If all hospitals performed at the level of a 5-star rated hospital, 232,442 lives could potentially have been saved from 2007 through 2009.

Meanwhile, has anyone any idea of when MyHospitals will launch?

***

14. Opportunities in a time of change

Of course there are many differences between health care and journalism, but at times I’ve been struck by what we have in common:

• we work in unpredictable environments, often under great constraints that are not fully appreciated by our critics, and where it is almost inevitable that things will go wrong – though of course there has not been anything like the push to improve the safety and quality of the media that we’ve seen in health care. One notable exception has been a small paper in the US that has introduced a box at the bottom of all online stories to enable readers to point out factual errors (as found on Twitter this morning).

• the online revolution is transforming what we do, as it is also bringing profound changes to the rest of society more broadly. In the changing media landscape, it is a time of uncertainty – who knows what my job will be in ten years time or even if I will have one – but also some opportunity, especially for those interested in engaging the public around complex issues like the safety and quality of health care.

Time to stop breaking the news, and start fixing it.

This is a quote from a blogger at “Newsless” called Matt Thompson, who is currently undertaking a research fellowship with the Reynolds Journalism Institute at the University of Missouri, and was previously the deputy Web editor of the Minneapolis Star Tribune.

There’s a message to us all there, in that quote.

It’s a message to journalists and other content makers, and to those with the capacity and the expertise needed to help inform public debate and to support a more engaged public.

“Fixing the news” might also help provide some fixes or at least new ways of looking at some of the complex problems we face, and in engaging the public in their solutions.

***