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…

• Through reducing attendances at A&E and GP practices, NHS Direct saved the NHS £213m in 2009/10. 1.5m A&E attendances and 1.9m GP consultations were avoided through patients’ use of NHS Direct’s services.
• Of the patients given self care advice, 30% would have gone to A&E and 42% would have gone to see their GP if NHS Direct had not been available.
• 1.8m patients with symptoms were directed to a lower cost end point than they would have otherwise chosen.
• Every call or web visit to NHS Direct in 2009/10 saved the NHS around £35.
• Every time we give a patient self-care advice we save the NHS around £50 by reducing demand on face to face services.
• For every visit to A&E that is avoided through the use of NHS Direct, £83 is saved across the health economy.

Florin, D. & Rosen, R. (1999). BMJ, 319(5): 5.

“Early findings raise questions about expanding the service”. This was in 1999. However, things are much more positive 12 years later.

a US-based un-conference “driven by a question”:

How can we rebuild health care on a participatory model using social media, open standards, open source and the best that the web and mobile internet technologies can
offer?

Eysenbach, G., Powell, J., Englesakis, M., Rizo, C. & Stern, A. (2004). British Medical Journal, 328(7449): 1166.

(full text)

abstract:

Objective To compile and evaluate the evidence on the effects on health and social outcomes of computer based peer to peer communities and electronic self support groups, used by people to discuss health related issues remotely.

Design and data sources Analysis of studies identified from Medline, Embase, CINAHL, PsycINFO, Evidence Based Medicine Reviews, Electronics and Communications Abstracts, Computer and Information Systems Abstracts, ERIC, LISA, ProQuest Digital Dissertations, Web of Science.

Selection of studies We searched for before and after studies, interrupted time series, cohort studies, or studies with control groups; evaluating health or social outcomes of virtual peer to peer communities, either as stand alone interventions or in the context of more complex systems with peer to peer components.

Main outcome measures Peer to peer interventions and co-interventions studied, general characteristics of studies, outcome measures used, and study results.

Results 45 publications describing 38 distinct studies met our inclusion criteria: 20 randomised trials, three meta-analyses of n of 1 trials, three non-randomised controlled trials, one cohort study, and 11 before and after studies. Only six of these evaluated “pure” peer to peer communities, and one had a factorial design with a “peer to peer only” arm, whereas 31 studies evaluated complex interventions, which often included psychoeducational programmes or one to one communication with healthcare professionals, making it impossible to attribute intervention effects to the peer to peer community component. The outcomes measured most often were depression and social support measures; most studies did not show an effect. We found no evidence to support concerns over virtual communities harming people.

Conclusions No robust evidence exists of consumer led peer to peer communities, partly because most peer to peer communities have been evaluated only in conjunction with more complex interventions or involvement with health professionals. Given the abundance of unmoderated peer to peer groups on the internet, research is required to evaluate under which conditions and for whom electronic support groups are effective and how effectiveness in delivering social support electronically can be maximised.

from Pew Internet & American Life’s Online Health Search 2006 (by Susannah Fox).

introduction

We asked respondents to think about the last time they went online for health or medical information, hoping to capture a portrait of a typical health search. As in past surveys, the typical online health information session is often undertaken on behalf of someone else, starts at a search engine, includes multiple sites, and has a minor impact on the person’s health care routine or the way they care for someone else.

The working pages for the next version of the American Psychiatric Association’s bible, the Diagnostic and Statistical Manual of Mental Disorders. Discover your mental health here!

from Wikipedia