Andy Jaeger big thinking for a small world

15Feb/120

Guardian Healthcare Network article

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.

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24Jan/120

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

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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.

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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.

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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

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13Dec/110

Guardian Healthcare Network interview

Interview with me by Sade Laja in today's Guardian. I'm so thrilled that my name is spelled wrong. Being Grauniaded is such an honour. Anyway, here it is (and obviously also on the Guardian website).

NHS Facebook misuse should be resolved at local level

The author of recent guidance on using social media for nurses and midwives says NHS managers should be able to actively respond to issues around how their staff use social media.

Andy Jaegar, assistant director of public and professional communications at the Nursing and Midwifery Council (NMC) and author of recent guidance on social media, says that NHS managers must be better equipped to handle issues around social media.

The regulator has seen an increase in the number of enquiries from nurses and midwives about social media and referrals that directly relate to social networking, but despite this there are still managers who are "social media refuseniks".

"One of things that we say in our advice is that if a manager has responsibility for investing in a complaint about the use of a social networking site, that they should join the social networking site so that they understand the mechanics of how it works. People need to familiarise themselves with this kind of thing," he says.

"I think actually what it needs is a robust response at a local level. In our advice much of what we've done is interpret the standards that already exist around conduct, performance and ethics. We're just helping people to understand what it is that is going on and then act appropriately."

But he says: "that really is better done not with a set of national guidelines from the Department of Health, but with local managers taking responsibility and understanding the issue and dealing with it for themselves."

Last month a snapshot survey of some of England's biggest trusts by the Guardian's healthcare network showed that 72 separate actions were carried out by 16 trusts against staff who inappropriately used social media between 2008-09 and October 2011, suggesting social networking sites are presenting some challenges to the health service.

Jaegar say one of the things that prompted the guidance over the summer were questions from employers about issues of confidentiality and when it was appropriate or not to be friends with a patient on Facebook. This led to guidance being created largely based on the NMC's code of conduct for nurses and midwives.

"We heard from students, nurses and midwives about the inconsistencies in the way that their managers were dealing with problems that they were raising about colleagues or other students' use of social networking sites," Jaeger says. "So some of what we've included in our advice is around the managers who are having to deal with these issues. It's actually for them to have some understanding of social networking sites and how they work, but also to take the issues that are raised with them as seriously as if they had happened in a real world scenario."

The British Medical Association (BMA) also issued guidance around the same time as the NMC as it said it felt that with more people using social media, advice and guidelines were lacking.

The NMC's guidance has proved a success among healthcare professionals, and the guidance has received 50,000 page views since it was published in July.

From his own experience, Jaegar explains that while there are some managers who use Facebook and Twitter, there are some that are "social media refuseniks". This becomes an issue when these managers fail to understand the ethics around social media, which makes it hard for them to tackle problems that arise as they might not see why something may be inappropriate.

Jaegar says: "When I've given talks on this I've used the example of somebody taking photographs of their colleagues, changing them and putting rude captions on them and sharing them online.

"If you view that as seriously as if somebody had done that and pinned it on a staff noticeboard, it gives you as a manager a better steer about how important it is that you deal with those kinds of things robustly and not just think because it happened on a social networking site like Facebook that it's not important, because it is."

Jaeger says he believes that staff misuse of social media is largely unintentional, but there are cases that the NMC deals with which are "absolutely deliberate" – which is perhaps not surprising given that the regulator deals with referrals relating to nurses and midwives that may not be fit to practice. Such instances include pursuit of relationships with patients and bullying and harassment of colleagues.

Looking to the future, Jaegar says that the NMC is currently helping the British Psychological Society to produce its own set of social media guidelines for psychologists. He says the NMC is also interested in encouraging healthcare professionals to use social networking sites to positively engage with patients and share good health stories. He adds that it would be disappointing if some health professionals stayed away from sites like Facebook just because they were scared of misusing it.

"We're starting to think about, organisationally, the kind support we can give to nurses and midwives who are positively using social media as a way of talking about health," he says. "There are potentially so many positive benefits. It's an area we're looking at, and we'll be publishing something in the new year on the subject."

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