Invited commentary on … Patient information on schizophrenia on the internet

‘An honest tale speeds best, being plainly told.’ William Shakespeare, King Richard III

William Shakespeare and a few well chosen words… 400 years on, the vellum may have been replaced by a computer screen but Kalk & Pothier remind us that simple messages plainly told still work best.

The internet offers confidential and convenient access to a depth and breadth of information previously undreamed of, underpinning an information revolution with important implications for mental healthcare. However, using the example of schizophrenia, the findings of Kalk & Pothier remind us how the language of health-information internet sites can feel obscure to the end-user. Given that many young people with psychosis may already use the internet routinely for information, this is of particular relevance to early intervention services.

Furthermore, the internet is one of a range of health information sources available to young people, a group acknowledged as finding traditional health services difficult to access. Focus groups of 11- to 19-year-olds studied in Nottingham report that the internet was their primary general information source (Gray et al, 2005). Of 1209 Americans aged 15-24, 75% report accessing health information online. Not only did these young adults access online health information, but they seek it more often than they check sports scores, purchase merchandise or participate in a chat room (Rideout, 2002).

The Pew Internet & American Life Project provides further evidence of the impact of the internet on decision-making for those with health problems and their caregivers (Fox, 2007).

1. • E-patients with long-term conditions are more likely than other health seekers to go online for information about their own conditions.

2. • 58% of e-caregivers found the internet the single most important source of information during a loved one's recent health crisis.

3. • The impact of the most recent search for health information was most deeply felt by internet users who had received a serious diagnosis or experienced a health crisis in the past year.

4. • Over half reported that their most recent health information session affected how they took care of themselves or cared for someone else (42% minor impact; 11% major impact).

Moreover, the internet revolution goes beyond information transfer. How we relate and socially interact together is undergoing a transformation that supports the emergence of whole new communities. Young people may feel empowered online and gain a degree of anonymity that gives them confidence to discuss sensitive or embarrassing issues, bringing with it opportunities to diminish stigma and build inclusion for those with mental disorders. But this may not be all good news. The recent cluster of suicides in young people from Bridgend, South Wales offers a counterbalance while reinforcing both how powerful the internet can be and how it has relevance for mental healthcare (The Times, 2008).

Attracting the attention of The Guardian online, a new approach being tested in Spain has been to create a virtual consulting room designed to help young people too embarrassed to speak to a doctor about difficulties such as a sexually transmitted disease or a drug problem (Keeley, 2008). Situated in a popular young person's website, Spanish health authorities provide logged-on doctors to offer anonymous advice in a way that creates a more relaxed opportunity for young people to discuss fears and concerns not always realised in traditional face-to-face consultations. Perhaps such an approach may particularly suit young people reluctant to discuss mental health concerns?

Clearly the internet can now offer strategies that move beyond basic education, reflecting a continual process of technological innovation which has eased and enabled access to care. The history of such advance is well illustrated by the example of the famous flying doctors of the Australian outback, who enabled people living far from established services to access healthcare. Now new and developing technologies such as tele-conferencing have made this much easier and convenient. Most recently, e-therapy is an emerging medium where clinicians can offer email discussion and advice over the internet. New possibilities can be anticipated as the information revolution develops new tools such as video imaging, downloadable podcasts, mobile telephones and many more.

Technology will continue to present us with new and exciting opportunities, but the point of the article by Kalk & Pothier is well made - that although we can develop new ways of hosting information, we also need to be wary that the information provided is accessible to make the most of the opportunity. However, one serious limitation of this study is its inability to consider the impact conveyed by descriptions of disorders such as schizophrenia. Shakespeare highlights the need for an honest tale, one that resonates with the things that matter to the listener. It is not just about the words themselves but the ideas these words express. No matter how simple the language, if their essence conveys a pessimistic outlook, a preoccupation with symptoms, medicines and side-effects, and a disregard for the stigma felt, then this young client group and their families may yet feel unheard and unsupported. Perhaps the conclusion by Kalk & Pothier that websites should be quality assured for readability might be further enhanced by including a consumer guide to relevance?

Although it is unlikely to supplant the role of trusted peers and adults, the internet has found an important place among young peoples’ repertory of health information sources. The article by Kalk & Pothier is a timely reminder of the need to consider carefully how we use technology like the internet to support our clients: as Shakespeare might have advised, an honest tale plainly told is important if you are a young person or their family coming to terms with some life-changing news.

Declaration of interest

None.