Caught in the web

Back in December, I told the Guardian Health Network that we were looking at publishing information for nurses and midwives about positive uses of the internet and social media. Well, issue 4 of NMC Review is just out, with a lead article written by me (reproduced below), comment from health bloggers and lots more. And an awesome eBoy-style illustration.

Caught in the web

The internet is having a profound impact on how healthcare is delivered, managed and discussed – and there’s no turning back. We explore some implications for the public and the professions

Digital technologies have changed our lives. We feel the impact of the 'digital decade' in the way we use the media, entertain ourselves and connect with our friends and families. Being online has become an unremarkable, mainstream element of many people's daily experience. Whether you check Facebook on your smartphone as you wake up, or you are a Twitter refusenik confused by David Dimbleby mentioning hashtags during the BBC television programme Question Time, we all find ourselves caught up in the world wide web.

Being online is transforming our social lives - and changing the world. The Arab Spring of 2011 highlighted the power of blogs and social networks to mobilise real-world communities and transform societies, with digitally connected citizens playing a central role from Libya to Bahrain. Closer to home, Twitter and BlackBerry Messenger might have played some part in fanning the flames of last summer's riots in England, but the Big Society response that followed could only have been facilitated through a social network. Organising themselves around the Twitter hashtag #riotcleanup, hundreds of people armed with brooms took to the streets of London.

The online world can seem bewilderingly complex, especially for nurses, midwives and patients who are reluctant to be swept along by the digital revolution. Though websites and services may be daunting for a first-time visitor, scratch the surface and you will find the same information, news and gossip that people share with each other in everyday conversation. Beyond the jargon (see our glossary), so much is familiar.

New technology creates opportunities for patients and service users to access healthcare information online, and to connect with others with similar conditions, but this is close to the familiar world of glossy leaflets and support groups. In the arena of health promotion, social marketing and public health practitioners have harnessed online tools to help transform health outcomes, but the principles, messages and methods remain much the same. Furthermore, as we explore later, although social networking sites like Facebook present new challenges for nurses, midwives and students, as well as the institutions where they work and learn, those challenges centre on a perennial concern - appropriate professional and personal behaviour.

Empowerment and reliability

Beyond the challenges for people trying to understand and use these technologies, the world wide web also presents new opportunities to empower people to improve and maintain their health - by placing the tools to discover and share information directly in their hands. Empowerment may be a relatively straightforward idea in the context of online behaviours, but it is considerably more complex in the world of healthcare. It can underpin both the role of professionals in guiding patients' choices, and the concept of patients as consumers who make decisions independently of professional advice. It does, however, provide a useful prism through which to view the development of a wide range of technologies and their impact on patients (Lemire 2010).

Patients and service users are becoming more empowered as they use the tools of the world wide web to learn and apply expert knowledge, and play a more active role in the prevention, treatment and monitoring of their own illnesses and conditions. Empowerment has a role to play collectively too, as groups of patients and carers participate in solidarity networks and advocacy groups centred on specific conditions and experiences.

Ready access to health information online can give empowered patients access to a range of materials that may help them manage their own conditions. If access to a real-world healthcare professional is needed, patients may find it useful to 'triage their conditions with the easiest or most appropriate information source first ... the convenience of accessing online self-care information rather than visiting a health professional is oft en cited as a motivation for using the internet' (Eysenbach 2008). This can speed up diagnosis, and lead to more informed discussions between patients and professionals.

It can also lead patients to develop a firm self-diagnosis that may make it harder to explore the problem when they do eventually meet a health professional. Yet dealing with patients who are attached to inaccurate but seemingly credible information that supports their view of the world is not a new phenomenon. More positively, the world wide web opens up many possibilities for patients who want deeper knowledge of their health problems, and find information that leads to more sophisticated questions.

Credible information

Conversations about the credibility of online information are particularly important with patients whose approach to searching the web can be characterised, perhaps unfairly, as diagnosing with Google and treating with Wikipedia. Avoiding low quality and potentially harmful healthcare information online in itself represents a challenge. Initiatives like the Information Standard, designed as an accreditation scheme for online health information and supported by the Department of Health (England), may help address this but their reach will always be limited to mainstream websites willing to enter a certification process.

Information is easily distorted as it is replicated across the web, and both patients and professionals need help to find, evaluate and use high quality peer-reviewed information controlled by experts. What is most important is the credibility of the sources cited by a particular piece of health information, not how frequently it appears in online searches.

Communities and crowds

The internet, as well as being a source of health-related information, also provides mutual support opportunities for patients and service users online. Sometimes these online communities are managed by organisations that provide support in other ways, such as Breast Cancer Care's online community of 17,000 members. Others emerge spontaneously and organically in online spaces that were not designed for the purpose. There is room for healthcare professionals to engage here too. The Terrence Higgins Trust, for example, has an online outreach programme, with sexual health advisers available in chat rooms.

How can we engage with discussions about health in online spaces that deliberately exclude healthcare professionals? Take the continuing controversy around 'pro-ana' websites, which have been criticised for promoting anorexia nervosa among young people. Such sites do express a form of empowerment, but they are extremely worrying because of the potential harm to people who follow their advice. This has led to calls to have them classified as harmful (Royal College of Psychiatrists 2009), and blocked automatically by internet service providers.

Pro-ana websites are of course an extreme example. Many self-organising online communities provide valuable and health-enhancing spaces for those affected by eating disorders. Professionals need to tread carefully, to understand when to step in and when to step back while patients support each other.

Sharing experiences online

Patients and service users are not going online just for information and support. As more people use Facebook, Twitter and other social networks, more are sharing their thoughts and experiences in real time with their friends and the wider world. Talking online about experiences in healthcare environments is becoming more common, though there are competing views about whether the open, public nature of social networking sites increases or diminishes the likelihood of someone disclosing personal information (Bateman et al 2010).

This sharing can include good news, from celebrity mums using Twitter to announce their pregnancies and praise their midwives, to the hundreds of patients who shared their personal experiences of high quality NHS care in 2009, using the hashtag #welovethenhs. Patients also talk about poor experiences, like journalist Mark Sparrow. His experience of hospital food during a long in-patient stay was so poor that he photographed and blogged about every meal. This eventually led to a television documentary (Channel 4 2011).

Sharing personal information online may be a particular problem if people talk not only about their own experiences but also those of others. Just 23 breaches of patient confidentiality by NHS staff [PDF] were found on social networking sites between 2008 and 2011, (Big Brother Watch 2011), but the more widespread breaches of confidentiality by patients usually go unchallenged and unreported. While acknowledging the importance of empowering all service users, open discussions about responsibility and respect may be needed to deal with these situations.

Useful channels for those who wish to share their experiences can be provided by initiatives like Patient Opinion. This online service encourages open sharing of positive and negative stories, with opportunities for healthcare providers to respond. Such channels can be a force for good by bringing problems and solutions into the open, and providing an impetus for change.

Whether you yourself go online or not, you cannot ignore the impact of the world wide web. People in the care of nurses and midwives are increasingly going online to find healthcare information, create communities and share their experiences. It would be foolish to make predictions about the future of healthcare online, but the desire of many patients and service users to empower themselves and take control of their own health and wellbeing is not going away.

In a world transformed by digital technology, nurses and midwives can play a vital role in using the rich resources of the internet to support the health and wellbeing of people and communities, in the real world and online.

References

• Bateman, P J, Pike, J C and Butler, B S (2010). To disclose or not: publicness in social networking sites. Information Technology & People, 24(1), pp 78-100.
• Big Brother Watch (2011) NHS Breaches of Data Protection Law: How patient confidentiality was compromised five times every week. [pdf]
• The Truth about Hospital Food (2011). [Television programme] Channel 4, 21 February 2011, 20:00.
• Custers, K, and Van den Bulck, J (2009). Viewership of pro-anorexia websites in seventh, ninth and eleventh graders. European Eating Disorders Review, 17(3), pp 214-219.
• Eysenbach, G (2008). Credibility of Health Information and Digital Media: New Perspectives and Implications for Youth. In: Metzger, M J and Flanigan, A J, ed (2008), Digital Media, Youth, and Credibility. Cambridge, MA: The MIT Press, 2008. 123-154.
• Lemire, M (2010). What can be expected of information and communication technologies in terms of patient empowerment in health? Journal of Health Organization and Management, 24(2), pp 167-181.
• Nursing and Midwifery Council (2008). The code: Standards of conduct, performance and ethics for nurses and midwives.
• Nursing and Midwifery Council (2011). Social networking sites.
• Ofcom (2011). Communications Market Report: UK.
• Office for National Statistics (2011). Internet Access - Households and Individuals, 2011.
• Royal College of Psychiatrists (2009). Psychiatrists urge action to tackle 'pro-ana' websites danger.
• Wolters Kluwer Health (2011). Point-of-Care Survey.