How to avoid bogus health information on the web

Originally published in The Conversation by Andy Tattersall, University of Sheffield

Health is one of the biggest topics searched for on the web, yet despite its importance a large portion of this information is inaccurate, anecdotal or biased.
According to Pew Research, 72% of internet users in the US search for health information. In the UK, the Office for National Statistics said that 43% of users searched for health information in 2013. The empowering of patients to understand and manage their own health is an important issue at a time when departments are under increased pressure.
The NHS is keen to encourage the public to take better care of their health, to know how to spot the early symptoms of bowel cancer for example. But given that inaccurate online information is now just part and parcel of the web, should a universal quality kitemark be applied to good sources to help health consumers make better decisions?

Drinking from a fire hose

There has been no shortage of articles written about the problems of accessing poor health information on the web. One paper in the Lancet in 1998 quoted a US public health official as saying: “Trying to get information from the internet is like drinking from a fire hose, and you don’t even know what the source of the water is.” Seventeen years on this problem still remains.
Many people – and patients – don’t realise the origins of some of this health information, just that it was on the first page of Google’s search results. This equates to the idea that a page-rank relates to quality, yet many good health organisations and charities don’t have the resources to optimise their search results position.
All too often searches take users to results such as Yahoo Answers, or some spurious website that claims to sell the product from an online snake oil salesman that can cure them of their ailments. Their existence proves there is very much a market for health cures that have no clinical evidence as to their effectiveness.
Very little attention is also paid to factors such as authorship, web links, date of publication, who is behind the website and whether they have ties to commercial companies. Web 2.0 and social media not only allowed consumers to find information on the web and discuss it, but made it far easier for anyone with a motive to publish, a potentially dangerous scenario in a healthcare context.
There are high-quality health information websites that offer comprehensive services from symptom checkers to peer-support groups. Despite this, the issue still remains, that aside from those like NHS Choices and Boots WebMD how do patients know which websites to trust? Comprehensive health websites built on knowledge and impartiality such as Patient.co.uk and Netdoctor and, in the US, the Mayo Clinic, vie for attention among the many forums, blogs and websites providing inaccurate and potentially harmful information.

Flying kites

So what can be done to give users more trust in particular websites? The NHS could encourage users to access and critique good health information – the NHS have already done this by targeting marketing towards specific health groups. Then there is The Information Standard – a certification programme run by NHS England for organisations who produce evidence-based healthcare information for the public. This could also be more widely spread to online content and promoted. Gaining the kitemark requires that information is clear, accurate, balanced and up-to-date.
Another non-for-profit organisation that tries to separate the good from the bad, similar to The Information Standard, is Health on the Net. HON were founded 20 years ago in Geneva and also provide a kitemark for quality information on the web.
The problem for both of these certifications is that most patients are probably not aware of them, despite The Information Standard certifying 250 health-related websites and HON 5,000. And a small badge at the foot of a web page means users are no more likely to be pay heed than to the terms and conditions of Facebook.

Critiquing information

Digital literacy remains a big challenge in modern society. Many socio-economic groups are either excluded from using the web or do not have the level of skills to critique and assess online information. Applying quality standards or kitemarks on a site can only do half of the job. In an age where web users become increasingly impatient to find information it becomes also becomes increasingly important for them to have clear signposting.
For patients already in contact with services, front-line healthcare staff – perhaps with some training – could help to teach patients how and where to find the best information about their conditions and symptoms and how to critique the results they find.
Health consumers all want different things from the web, some search for health information for assurance, others for discussion, some for answers and knowledge. Official health campaigns encouraging people to be aware of potential symptoms is good, but teaching them where to access good information for multiple conditions any time is surely better.
At least through a programme of information education and the development of UK health web standards not unlike the Health on the Net organisation, patients could confidently gain a better understanding of their symptoms and conditions and use this knowledge to improve their health.

This article was originally published on The Conversation. Read the original article.

So you're an Information Specialist - What does that mean?

Me playing with the world's biggest tablet ;-)

So...what exactly do you do?

Library and information professionals are used to being asked questions, it comes with the territory. Yet one of the hardest questions I get asked on a personal and more often professional level as part of my role as an information specialist at The School of Health and Related Research is that of; ‘So what do you do?’

I’m sure I’m not alone in having problems trying to describe what I do, these days people’s job roles are either very diverse, specialised or complex. And like lots of my peers we get to meet lots of people at networking events and that invariably leads to ice-breaking questions such as that one.

Life was so much easier in the past

When I left school in Derbyshire in the 1980s I had the options of going to work down the mines, in a factory or a shop, in roles I could have easily explained in a couple of short lines. Thankfully subliminal teenage foresight stopped me from going into the doomed mining industry but I did start in a warehouse that fitted out and repaired fire engines and ambulances. Not realising it back then, this was an obvious toe-dip into library-associated work as I worked my hardest ensuring everything was catalogued; and could be sourced easily from behind the counter on request. Fast-forward nearly thirty years and things have changed somewhat. These days it’s far from easy to capture what I do, as I lecture, train, write, present, network, research and most importantly support others.

What does Chandler Bing do?

Anyone familiar with the series Friends and the character Chandler Bing will be familiar with the long running joke that no one really knew what he did. At times I feel a bit like Chandler and the thought of trying to explain my job to someone does fill me with dread. Take for example the night out I had whilst in London at Internet Librarian International where the problem again came to light. I had known the two friends I was at the bar with for over 20 years, one of whom is a master chef, the other a manager for a bike store. We got onto the topic of health research and information and I started a long monologue about how health research is carried out and how information is assessed for quality. I remember the odd look they gave me and could see their brains working overtime; “how does he know this?”. At that point I said: “you do know what I do for a living and where I work?” Obviously not, they had an idea of what I did, that it involved the Internet, social media, bits of teaching and probably a few other things.

With networking being an important aspect of our professional lives I am used to responding to the "what do you do " question in more formal situations, but even then it can feel like I don’t really know the answer myself. People can easily make assumptions: ‘ah, you’re a librarian - you shelve books’ or ‘you work in a library, so therefore say ‘shush’ a lot’. Obviously librarians reading this right now will say that is far from the case. For a start, there are different types of librarians, subject, liaison, cataloguers, systems ones to name but a few. Yet many jobs, even though not explicit, do give people an idea of what kind of environment they work in and potentially what they might do.

So again, what is it you do?

So I’m at an event or conference and that question pops up; ‘what do you do?’ My often stunted (it’s stunted as I subconsciously think; ‘oh oh, here we go again’), reply; ‘An information specialist’. I realise that the best option is just to have a pre-written short paragraph script I can call upon, but it is always too late.

The replies to that vary, from either, ‘what is that?’ to:

‘Is that like being an IT technician?’

‘Is that like being a learning technologist?’

‘Is that like being a librarian?’

‘Is that like doing social media stuff?’

‘Do you work for the Government?’

‘Ah, excuse me, I’ve just seen a friend I need to speak to’

My answers have been from the very short; ‘If I wasn’t working for a university, I’d be at GCHQ reading your emails’; to very long ones where I can see them eventually looking for the nearest exit or friend. The reality is, that for a large part of the time I do not know what I do, let’s be clear here, I know what I have to do and know how to do it - hopefully very well. Yet I do not know how to explain my job, if I was to apply for a new job (note to boss here, am not presently doing this) I would obviously use the additional information to capture the many things mentioned above as best I can. Yet, it would still leave many thinking, so what does he do again? Often this comes back to the previous notion that many people in our aligned professions are doing very diverse and unique jobs now. You could get a dozen library and information professionals in a room to talk about their profession, yet most would be coming from different perspectives, experiences and roles.

It is what it is

At my institution I’m in a fairly unique role and have been for about eight years, one where I try and look for opportunities to engage with new technologies and help others do so. So yes, to some extent I’m a learning technologist, although I lean more towards research support. I also try and keep an eye on issues relating to these technologies, security being one of them, as many are third party, so yes, there’s a bit of IT technician about me. I encourage people to use, understand and exploit technology more. I try to help people use everything from cameras to computers, from browsers to searching better, so the IT side does play a big part. I engage with social media and altmetrics quite a lot and like everything else, keep a keen eye on the ethics and privacy issues. I am interested in information and how it is used, afterall. I have a big interest in the areas of Altmetrics and social media and therefore using it a lot often means people come to me asking how to engage with social media, so yes I do that a bit.

I also have some involvement with libraries and librarians as they are a group aligned to my role, my research interests and my education. My team has a small academic library and I have had involvement with how that runs, I speak at library conferences, so again I can see why they say that I’m a librarian. What I’m trying to say is that like so many people in my profession, often our real value comes from the sum total of our parts. What underpins my role, like so many professionals I come into contact with is that I help people, or try to help them. Like any good library or information professional I may not always know the answer but can certainly find out or find someone who does know.

To conclude I have to say that to me, my job is rarely complicated, it is not hard and whilst I do not know how to hack computers or write php I am adept at using technology. It is however a very diverse role, at times demanding, very changeable and requires me to make quick decisions and think for myself whilst always looking for the right opportunities. That pretty much describes many jobs, so I am not sure why it can be so hard to describe mine. Perhaps the real reason is that the role is not only diverse, but many things to many people. Even if a lot of people see you as one thing and that one thing is useful for them then you still have a role to play in supporting them. It has been a common problem for libraries and their survival, often people see them as just a place where books are kept. Not that they are places where activities are held, experts are in residence or knowledge and technologies can be accessed. That said, for the individual in the library and information setting it remains ever-important to work hard at what you do best and exploit that area of expertise. And if anything, there will always be people who can’t really understand what you do, but will know where to find you when they need help.

A Postcard from EAHIL

Photo by Helen

Posted by Andy

Our roving information specialist Helen Buckley Woods reports from EAHIL 2011

Hello from the EAHIL conference in Istanbul. The theme of this year’s conference is “Active Learning and Research Partners in Health” With delegates from 38 countries there is a positive feeling of sharing best practice and a real sense of partnership across Europe and beyond. I must be feeling that conference optimism – long may it prevail! The conference is in full flow and amongst others I have attended sessions on using the Kirkpatrick model to evaluate e-learning in Prague presented by Helena Bouzkova and Adela Jarolimkova and “e-learning in pills” Funda Topez described the creation of online short films as a cost-effective and time effective alternative for training health care professionals in the business of accessing the research literature. I have also had the pleasure of delivering a pre-conference workshop on active learning and the relationship between the research evidence and teaching practice in information literacy. Tomorrow is the last day with sessions including those on e-readers and e-text and knowledge management.

Andrew Booth named as a leading UK knowledge translator

Posted by Andy

 ScHARR´s Andrew Booth, Reader in Evidence Based Information Practice, has been identified as a key information source for those wishing to learn about new library and information sciences (LIS) research. 

This finding is part of the Research in Librarianship – Impact Evaluation Project (RiLIES) from the LIS Research Coalition (LRC), led by Professor Hazel Hall, which surveyed 200 people on their routes to learning about new LIS Research Results. Andrew Booth was highlighted with three other individuals as occupying a key knowledge translation role. 

Andrew is a founding member of the international Evidence Based Library and Information Practice movement and co-editor of the only textbook on this topic. This recognition acknowledges his role as feature editor over more than a decade of the Using Evidence In Practice feature in Health Information & Libraries Journal, the most highly-cited health libraries journal.

"My day-to-day work involves the production of knowledge in the form of systematic reviews and working with the NHS through the local National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care, South Yorkshire (CLAHRC SY), specifically the Translating Knowledge into Action theme. It is very encouraging to see the same skills that I use in promoting the use of health services research being recognised as equally valuable for my own profession" – Andrew Booth

National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care, South Yorkshire (CLAHRC SY)

Health Information & Libraries Journal

Research in Librarianship – Impact Evaluation Project (RiLIES)

The Research in Librarianship – Impact Evaluation Project (RiLIES – pronounced "realise") is a study supported by the LIS Research Coalition. It explores the extent to which funded librarianship research projects influence library practice in the UK. Of particular interest are the factors that increase or hinder the impact of project outcomes on practice. This study is led by Professor Hazel Hall, Director of the Centre for Social Informatics at Edinburgh Napier University and Executive Secretary of the Library and Information Science Research Coalition.

EAHIL We Go

Oooooh, excuse the pun, a bit on the cringe-worthy side I know but I just could not resist it. So it's off to the Emerald Isle for EAHIL 2009 at Dublin Castle for myself and Andrew Booth to give a presentation titled ‘Supporting the Health Researcher of the Future’ later this week.

In essence, we will be focussing on the use of Web2.0, in particular Web Portals such as Netvibes and our very own ScHARR Library Portal. Details of the paper and presentation should follow in a later post on this blog.

It’s going to be case of ferries, planes and automobiles as Andrew hits the airport and I drag my family across to Holyhead and then cross the Irish Sea by their swift hovercraft, although I’m not sure whether two hours constitutes as being swift.

Our plenary presentation takes place on Friday morning in the main hall of Dublin Castle and after attending the final afternoon of the conference we will be heading down country to Wicklow for a week or so of rest and rehabilitation. It’s a shame that I’m tee-total as I gather the Guinness Factory Tour is pretty good, maybe my wife can go for me.

Photo by Jim Linwood

Posted by Andy

(the) health informaticist

Posted by Anthea

In the interest of sharing our discoveries of other blogs, allow me to introduce you to "(the) health informaticist". Formed by a group of people working in the field of health informatics, it covers topics such as knowledge management, web 2.0, and evidence based medicine. To give a flavour of the discussions, the most recent posts are about: The Department of Health Information Accreditation Scheme and Information Prescriptions project, Medpedia, and Cuil, a new search engine.