In the run up to an event the NMC ran as part of Social Media Week, the Guardian Healthcare Network published an article I wrote on how healthcare professionals can engage safely with patients online. More thoughts on the event to follow, but for now, here's the article.
Talking with patients online: where are the boundaries?
Maintaining clear and appropriate boundaries in the world of social media can be a real challenge for patients and the health professionals who care for them.
Advice from the Nursing and Midwifery Council issued last year warned that nurses and midwives must not overstep those boundaries by sharing confidential information, distributing images taken in clinical environments or pursuing personal relationships with patients online.
Similar advice for doctors followed, and other regulators are taking action on a subject that concerns patients, health professionals and their employers. But while this advice has been helpful in clarifying expectations of appropriate behaviour, and allowing regulators to take action when boundaries are breached, it may have left health professionals with the impression that any online engagement with their patients is simply wrong.
An event run by the NMC as part of this year's social media week brings together bloggers, tweeters and digital enthusiasts from both sides of the patient-professional divide, to see where the boundaries should be drawn.
The simple fact is that health professionals need to understand how their patients are using the web, so they can find ways to engage with them better while still maintaining appropriate boundaries. The web 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.
Patients are becoming more empowered as they use online tools 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 is happening 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. Before they go to a real-world health professional, some patients find it useful to triage their conditions online. This can speed up diagnosis, and lead to more informed discussions between patients and professionals.
But 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. Conversations about the credibility of online information is important, particularly with patients whose approach to searching the web can be characterised as diagnosing with Google and treating with Wikipedia.
Nurses, midwives and other health professionals, engaging with their patients online, can help correct misinformation and signpost positive, peer-reviewed websites.
The internet, as well as being a source of health-related information, also provides patients with opportunities for mutual online support. Sometimes these online communities are actively managed by organisations that provide support in more traditional ways, such as cancer charities.
Other organisations find ways to engage in online spaces that were not designed with health in mind, for example sexual health advisers reaching out with safer sex information in gay chat rooms, or midwives engaging in networks for pregnant women and new mothers.
But what about the spaces where health professionals are deliberately excluded, such as "pro-ana" websites, which have been criticised for promoting anorexia nervosa among young people? Such sites are extremely worrying to health professionals and others because vulnerable people can be damaged if they follow their advice, leading to calls to have them classified as harmful and blocked automatically by internet service providers.
Professionals need to tread carefully and understand where the boundaries of safe practice are. Sometimes, this can mean stepping back and letting patients support each other.
Working out where to draw the boundaries is not easy, and patients and professionals need to find ways to coexist safely online. In every area of social media, rules of engagement are constantly being reviewed and our expectations rapidly evolve.
But like it or not, patients are taking conversations about their health online, and professionals have to follow, rethinking boundaries and getting involved.
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.
A real surprise on the NMC's social networking story towards the end of last week, as the British Medical Association released their own advice for doctors on social networking sites. It was serendipitous really. Our story was still going strong - featuring on BBC South West's local news on Thursday morning, and I was interviewed on the BBC Radio Bristol breakfast show - but the BMA's announcement gave us an extra boost, and saw the story being picked up in more national papers, and some technology blogs.
A selection of links below. By the way, you know you've arrived in life when the Grauniad spells your name wrong. See the end of the first link.
Day four of press coverage for the NMC's new advice for nurses and midwives. Thanks to the work of our media team, the story's been picked up by the South Wales Evening Post, and appears on page 3 of today's Daily Telegraph. There's even talk of TV interviews tomorrow.
The story about the NMC's new social networking advice seems to be spreading more widely, now picked up by the website You at Work. By the way, I'm happy to be quoted without being interviewed, just in case Johann Hari is reading this...
Midwives and nurses given social network advice
Nurses and midwives have been given a set of guidelines to help them steer clear of misconduct cases related to the inappropriate use of social network sites.
Many firms and organisations have noticed the popularity and ease of use of the likes of Facebook and Twitter and have opted to create a professional network for the benefit of the increasing number of Gen Y staff.
However, the Nursing and Midwifery Council (NMC) has seen a notable rise in the number of people being found to be discussing privileged information over the internet - most of the time unwittingly.
Assistant director of professional and public communications at the NMC Andy Jaeger, told People Management magazine the new advice was being made available to the UK's 660,000 registered nurses and midwives to stem the flow of misconduct cases.
"This guidance is about responsible use and encouraging employers to investigate issues proportionately and seriously, rather than issue blanket bans," he told the publication.
Facebook is an increasingly powerful website, as it has more than 750 million active users.
Another interview following the publication of the NMC's new advice on social networking sites, this time in Personnel Today. This interview was an interesting departure. I'd expected to discuss the advice we've issued for nurses and midwives, but instead we spent a lot of time focusing on the role of organisations in setting proportionate policies that encourage responsible use:
Businesses warned to provide guidance on social media
Employers need to provide clear guidance for staff regarding the use of social networking sites to avoid inappropriate relationships, harassment of staff and the potential for disclosure of confidential information, the Nursing and Midwifery Council (NMC) has warned.
"Increasingly, employers are facing issues as a result of the use of social media," said Andy Jaeger, assistant director of professional and public communications at the NMC. "They need to be encouraging responsible use and when issues do arise they need to take them seriously."
The organisation suggests that companies set out clear policies for staff regarding the use of such sites, including advising employees to keep their personal and professional lives separate as far as possible, upholding the reputation of their employer and profession at all times, and ensuring that they protect their own privacy by using settings available on sites such as Facebook.
Employers should also ensure that line managers are familiar with policies and issues, and make sure they treat any complaints from online activity - such as cyber-bullying or the sharing of confidential information - in the same manner as they would in the real world.
"If someone is harassing or bullying a colleague, doing that online doesn't make it any less serious than if it was being done face-to-face," said Jaeger.
The issue was particularly important where staff were in public-facing roles such as the NHS or teaching, he added.
"We're starting to see a small number of cases coming through which directly involve the use of social networking sites and employers are increasingly raising those issues with us," he said.
One recent example involved a psychiatric nurse who was struck off the register after contacting a former patient through Facebook and developing a sexual relationship with her, resulting in the patient self-harming when it ended.
"Particularly with regard to nurses and midwives, there are issues around relationships with patients and patient confidentiality," said Jaeger.
"Informal relationships with patients online just aren't appropriate. Social networking has made all of us easier to find so sometimes it's about clearly and kindly drawing some boundaries."
A further risk was disgruntled employees posting negative comments about their employer. "Where organisations are going through significant change, the fallout can happen in all sorts of ways and some of that can be online," he said. "Again, it's about having clear policies and thinking through how you can deal with it and doing so proportionately."
But companies should not look to impose a blanket ban on the use of social media, he added.
I've been doing a lot of work recently on how social media is used by nurses and midwives. As a culmination of this, I've authored updated advice for nurses and midwives on using social networking sites responsibly, and was interviewed by People Management magazine (for the second time in as many weeks!)
Nurses warned over use of social media
Social networking guidance is being issued to nurses and midwives by their regulatory body following an increase in misconduct cases relating to online activities and ethical code breaches.
The Nursing and Midwifery Council (NMC) said it was publishing practical advice on responsible use of the internet – specifically Facebook – as there is “clearly confusion about privacy issues and the use of social networking sites.”
The guidance is also designed to give employers a steer on shaping policy related to staff internet activities inside and outside of work, and how to deal with internal disciplinary issues that arise from incidents occurring in the social media space.
The formation of advice for the UK’s 660,000 registered nurses and midwives follows an “influx of enquiries” and a series of misconduct cases centring on social networking sites, said the NMC.
Last year a male psychiatric nurse was struck off for an “inappropriate relationship with a patient”, after contacting a woman formerly in his care through Facebook.
The council also highlighted a case in the US where a student nurse became embroiled in a legal battle with her employers, after she was dismissed for posting a photograph of herself posing with a placenta to Facebook.
The regulator is warning nurses to use such networking channels responsibly and be mindful of unintentional breaches of patient confidently – as well as their own privacy. The guidelines suggest that medical staff keep their personal and private contacts, discussions and profiles separate.
“If your profession is nursing or midwifery, it is particularly inadvisable to discuss work issues online,” said Andy Jaeger, NMC’s assistant director of professional and public communications, and author of the advice. “What you regard as just an amusing story, could end up causing serious offence more easily than you think.”
He warned that personal content is often “unwittingly” shared across networks, adding: “Most people simply don’t realise how much information is shared with the world if you don’t adjust your privacy settings on Facebook – and that includes personal details and photographs.”
He also told PM that the guidance was being issued to help employers develop social networking policies, as current procedures were “inconsistent.”
“Nurses and midwives have reported that employers are not dealing with issues occurring on social networks with the same degree of seriousness – particularly around bullying, harassment and inappropriate sharing of content," he continued. “This guidance is about responsible use, and encouraging employers to investigate issues proportionately and seriously, rather than issue blanket bans."
For reasons which now seem somewhat mysterious to me, I decided to spend part of my holiday at Internet World today, and was enormously disappointed and uninspired. Despite being imminently responsible for a project that will completely rethink a complex and interesting website, and hence expecting to find something to spark my imagination, I found nothing useful. I think it's because the exhibition is answering the wrong questions.
Ten years ago, five even, perhaps even as recently as last year, technology was everything. What was really exciting in the world of the web was how the stuff worked. New innovations in social networking, connectivity, mobile access, content management... these things were really important. Like Mr Gutenberg and the early days of his terribly impressive movable type, everyone was excited about the mechanics. If all your energy and thought is going into how big your typefaces should be and how to arrange them in the frame, it doesn't much matter what you print. What's most exciting is that something's been printed.
Just in the past year, almost imperceptibly, things have started to change in the world of the web. It wasn't until I was halfway through a pint in the pub afterwards that it struck me. Going to Internet World was like stepping into a time machine and going back to 2007. I got side tracked into a demonstration of what was billed as a new exciting content management system, only to find that it was no more dynamic and sophisticated than what I could achieve with blogger. Which is to say, the technology in and of itself has stopped being impressive. I wonder whether it's possible to be wowed any more.
Wandering around Internet World, I was faced with an unanswered question, despite all the answers on offer, because nobody seemed interested in what technology, connection and sharing could achieve. Everything on offer seemed to be about bits of kit. Despite all the interest in social networking, the focus was the networking, not the social. Despite the thousands of people coming through the doors, humanity seemed strangely missing.
I like the Zen question about trees falling in forests and whether they make any noise if nobody's there to hear. It makes my brain hurt, in a stretched and puzzled way, which I figure can only be a good thing.
It also makes me think about this blog. I've been heartened recently by reading Clay Shirky's excellent book and discovering, to my surprise, the relative unconnectedness of much of Web 2.0. In the case of blogs, just like this, readership and connection is limited to a handful of people. What makes the pattern of connections interesting is those people's connections with others. I wonder whether I could get to Kevin Bacon's blog in six steps? In any case, I'm somewhere deep in the long tail of connectivity, far off the right hand end of the graph. It's not true that nobody hears the Zen tree fall over. The tumbleweed does.
In the end, does it matter what I contribute to the growing body of opinion on the web? I think it matters more that I contribute at all, make a few connections and play my part as a link. I've already beaten the norm by keeping my blog going for more than a few posts. Now all I need is some readers...
Just discovered Twitter. Micro-updates, like the status update on facebook, but straight from my mobile phone. So I can chart the minutiae for anyone who happens to care or be watching. This may be entirely pointless, especially if nobody else I know joins, but I do quite like it.
twitter.com/andyjaeger if you want to find me. It's a hyper-minimalist facebook.