White, R. W. & Horvitz, E. (2008). Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search. Microsoft Research.

full text pdf

abstract:

The World Wide Web provides an abundant source of medical information. This information can assist people who are not healthcare professionals to better understand health and illness, and to provide them with feasible explanations for symptoms. However, the Web has the potential to increase the anxieties of people who have little or no medical training, especially when Web search is employed as a diagnostic procedure. We use the term cyberchondria to refer to the unfounded escalation of concerns about common symptomatology, based on the review of search results and literature on the Web. We performed a large-scale, longitudinal, log-based study of how people search for medical information online, supported by a survey of 515 individuals’ healthrelated search experiences. We focused on the extent to which common,  likely  innocuous symptoms can escalate into the review of content on serious, rare conditions that are linked to the common symptoms. Our results show that Web search engines have the potential to escalate medical concerns. We show that escalation is associated with the amount and distribution of medical content viewed by users, the presence of escalatory terminology in pages visited, and a user’s predisposition to escalate versus to seek more reasonable explanations for ailments. We also demonstrate the persistence of post-session anxiety following escalations and the effect that such anxieties can have on interrupting user’s activities across multiple sessions. Our findings underscore the potential costs and  challenges of cyberchondria and suggest actionable design implications that hold opportunity for improving the search and navigation experience for people turning to the Web to interpret common symptoms.

emphasis added

notes and quotes:

great table that breaks down symptom searched for and the likelihood of various causes to come up in search results. In the Health chapter, I write this up like this:

a search for “headache” is as likely to point to “caffeine withdrawal” as “brain tumour” as its cause. The annual incidence rate of brain tumours in the US, where this study was based (although it used the global web as its data pool) is one in ten thousand. And a search for “chest pain”? You’ll more likely discover you’re going to have a heart attack than either indigestion or heartburn.

Of the 515 people they surveyed, they found that the mean number of health related searches their participants performed every month was 10.22. They mostly search for info on symptoms, but almost half search for info on serious medical conditions. 41.7% search for medial diagnoses and 38.1% look for communities with similar conditions.

Most people in their study were pretty balanced about the web. They took what it offered with a grain of salt and didn’t put all their faith into it.

their conclusions:

escalation of medical concerns is potentially related to the amount and distribution of medical content viewed by users, the presence of escalatory terminology in pages visited, and a user’s predisposition to escalate or seek more reasonable explanations for ailments

and a recommendation…

Search engine architects have a responsibility  to ensure that searchers do not experience unnecessary concern generated by the  definitions of relevance and the  ranking algorithms their engines use. They must be cognizant of the potential  challenges of cyberchondria, and focus on serving medical search results that are reliable, complete, and timely, as well as topically relevant.

hmm.. difficult…

data professionals need shorthand ways to easily think about the societal impact of their work

Coverage of Strata 2012 from Jim Adler, who sat on the panel, ‘If Data Wants to Be Free, is Privacy a Prison?

Good list of recent gaffes, interesting frameworks, outlines of privacy perils.

HT @kaythaney

6-7 March 2012 Liveblog from Nieman Journalism Lab.

Via Ethan Zuckerman.

"The results of a survey of U.S. journalists (N = 655) show that Internet news information was viewed as moderately credible overall and that online newspaper journalists rated Internet news information as significantly more credible than did print newspaper journalists."

Cassidy, W.P.  (2007). Online News Credibility: An Examination of the Perceptions of Newspaper Journalists, Journal of Computer-Mediated Communication, 12(2): 478-498.

Full text.

a report by the Media Standards Trust

Here’s the blurb:

In parts of the British press foreign coverage has fallen by almost 40% since 1979, now making up only just over a tenth of stories in the paper. In an increasingly globalised world how can this decline be explained? Does it matter? Is a new foreign news ecology emerging?

This report, the first of its kind on foreign reporting in the UK press, analyses how coverage of the world had changed over the last 30 years in four UK national newspapers, and explores what implications this has for how we get our foreign news in the future.

Interview: Walid Al-Saqaf

What is Yemen Portal?

YemenPortal.net is a news aggregator. More than ninety per cent is in Arabic. It gathers information or news articles released in the official news websites, as well as opposition, dissident and independent news websites, and puts them together so they present a comprehensive view of what happened throughout the day from all of those sources. This feature has allowed a lot of people to look into dissident content they didn’t know about.

Why was this necessary?

The traditional media in Yemen is very restrictive, and the broadcast media is monopolised by the State: you wake up in the morning in Yemen and open the news on TV and you find that all the news is about the President’s meetings and the Government’s meetings. Like in many authoritarian regimes, it’s merely reflecting the positive image of the State regime. So as an escape entry, readers find alternative news on the Internet. That’s why there are many more readers for dissident content on the Web than in the traditional media.

But Yemen Portal doesn’t only give voice to dissident or opposition viewpoints.

I’m not doing it as a favour to the alternative websites, I’m just doing it because it’s necessary to get all the different views on the portal so just as the dissidents have a voice, so do the Government websites. I differentiate between what the Government says and what opposition news websites say and categorise them based on their affiliation on the front page so readers don’t get misled about who wrote it.

How did the Government respond to the fact that an increase in readership was discovering dissident content through Yemen Portal?

They simply blocked access to it, to the whole Website from within Yemen. Because we only have Government controlled Internet service providers, one single order from any Minister of Communication simply denies access to all users in Yemen. I never expected that to happen because I explained from the very start that I wasn’t going to publish my own content or my own views. I’d let everyone else do it, like what Google News does.

Upon blocking my Website, I had three choices: I’d actually give way and let the Government control what appeared and what didn’t appear on my Website; I’d shut it down altogether; or I’d continue to have the content that’s controversial, yet find ways to allow people to access the Website. I chose the last because I felt it would have been a betrayal to my own profession to simply manipulate what people see. If I shut it down, it would have meant a disaster on both academic and reputational levels.

When did you decide to create a tool that circumvented the Government blockades?

I’d decided that we needed to fight, not only on the campaigning level of promoting freedom of expression through articles, activism and workshops, but we also could develop technologies that allow people to access censored material, particularly material that is in no violation to laws. It’s not a terrorist Website that they’re blocking. They’re simply dissident websites that are calling for change. I have an academic degree in Computer Engineering, so I developed Alkasir.

How does Alkasir work?

Although it is a circumvention tool, it does not circumvent everything. It only circumvents what is blocked so, for example, if you were browsing the Internet and you wanted to open your Gmail, your Gmail would go through the local regular ISP. But once you open a blocked Website, that’s when it activates itself and changes into proxy mode, which is the encrypted mode. Your data to and from blocked websites are encrypted through this tunnel created through the software, and that helps to anonymise your activity on blocked websites, but leaves your activity on the regular websites identifiable.

In my opinion, that’s better than anonymising everything because if you anonymise everything, you give the impression to the monitors at the Internet Service Provider that there is a fishy connection. While in my software, some of the websites you visit would be blocked and would go through the encryption, but others would go directly. It shows that there is traffic going on and they see that regular websites are being opened. That helps to reduce the risk of being detected.

There’s no Holy Grail in anonymising and circumvention tools. There’s a misconception that there can be one way to absolutely hide your identity. That’s not possible. I mean, there will always be ways, just like you cannot secure a computer from viruses one hundred per cent. All you can do is raise awareness of what you should do, how you should do it.

Why do you feel that providing access to information at great risk to yourself is a risk worth taking?

It’s a human right. Information freedom is essential if you’re really going to live a dignified life. My father was killed in a traffic accident that was never investigated; it’s still mysterious today. He was an activist who brought up issues of corruption, of grave criticism of the regime, criticism of wars that the regime had taken. He paid for it with his life and now I see what I am doing as a little something to help people know that they have a right to learn what’s going on around them. Once you’re better informed, you can take better decisions.

Although the means have changed – my father was a traditional journalist and I’m an online journalist – the same objective remains: to make sure that people know what is going on around them and what’s being said and done around them. The least I could do was to continue his message. I have skill in IT and it is a responsibility that I don’t keep this knowledge to myself. I should utilise it in something that can help others. That’s why I’m doing this.

What you feel is the most powerful aspect of the digital world?

The lack of a centralised authority to control the flow of information is what makes the Internet unique and what it is today, and being built on a technology that is open source. Let us assume one day that the Internet was shut down by some super force. We already have the knowledge, and software developers around the world could replicate or build another Internet using the same technology.

It’s not impossible to develop an Internet without Government, and now with the evolution of peer-to-peer networking, there is also a real possibility of transmitting information in a way that extremely difficult for Governments to track.

How is the Web is most effective at influencing people?

There are various means of using technology in a way to combat oppression and authoritarianism and tyranny. You can use it as a way to disseminate information, but you can also use it to network. That is very useful for protests, for campaigns, for change and revolutions. Making sure that it’s used for change and for something that is positive is essential. I’m relying on the intentions and objectives of content creators to ensure that the technology is used for positive ends.

What do you feel that the Web can’t do to change attitudes and behaviours?

The Web is merely a tool. If you have a calculator and you have three numbers and you add them up, the results can’t be wrong unless you did something wrong. If it’s wrong, it’s probably because the person did it in the wrong way. The Web, like the calculator, is a machine that listens to what you say. It’s usually humans that screw things up.