Communicating Risk in Health Information (London) - Tues 26 Jan 2016

ZOMG this sounds amazing.

Copied and pasted from their event registration website (from which you can buy a ticket, £240 max, cheaper for members): http://www.pifonline.org.uk/pif/?ee=73

 

 

 

Communicating Risk in Health Information

We are delighted to announce that bookings are now open for the 'Communicating Risk in Health Information' event on Tuesday 26 January 2016, to be held in London.

Risks and statistics are an essential part of patient information.  What is a person’s risk of developing a particular condition in their lifetime, or of having a certain symptom? What is the chance of a treatment or procedure working? What are the risks of getting different side-effects? And can people change these risk factors?

However, many patients are unable to comprehend basic statistics, never mind navigate their way through the reams of data that may come with health information comparing treatment options. As information and support professionals, our job is to make sure we can guide patients through the minefield of data and figures to help them feel confident in making their own decisions.

This one day event will: look at the challenges many patients experience when trying to understand risk; hear from experts in the field of communicating risk; and share case studies from health information producers who have addressed this in their work.

Presentations will include:

• Health literacy and numeracy in the UK (Community Health & Leaning Foundation)
• How can we clearly communicate risk information? (David Spiegelhalter, Winton Professor for the Public Understanding of Risk in the Statistical Laboratory, Centre for Mathematical Sciences, University of Cambridge)
• Factors influencing the perception of side-effect risk information (Peter Gardner, Head of School of Psychology, University of Leeds)
• TBC Shared decision making and risk communication (Richard Thompson, Professor of Epidemiology & Public Health, Newcastle University)
• Best practice for clearly communicating risk (PiF, based on PiF Toolkit best practice)
• Using data visualisation to explain risks (Eluned Hughes, Breast Cancer Now)

The event will close with a practical group session that allows delegates to discuss the key challenges they face and how they can apply the findings or recommendations from the presentations in their work.
A full agenda is being developed and will be available here soon.

Through attending the event we hope delegates will develop:

• Increased awareness of numeracy and health literacy issues, and their impact on individuals’ everyday life
• Increased awareness of risk communication issues and impacts on individuals’ health and experiences of care
• Increased understanding of how to communicate risk clearly in health information
• Increased awareness of how other health information professionals and organisations approach communicating risk

This one day event costs £125+VAT to attend for PIF members (please login to the website before making your booking to receive the members rate), and £200+VAT for non-members.

We hope you can join us!

If you have any queries about this event please contact admin@pifonline.org.uk.

The PIF Team

Blunt tool idea: colour-coded system for medical research papers' study design, and conclusions

Yesterday I tweeted this

Blunt tool idea: add a colour-code for medical research papers that indicates what sort of conclusions can be drawn from the study design.

— Jo Brodie (@JoBrodie) August 2, 2015

I was pleasantly surprised that no-one laughed and it even got a few retweets, and a later 'bump' tweet resulted in a bit of discussion with Jon Mendel and Adam Jacobs on the practicalities.

A great deal of research is about getting your bearings - something looks interesting to study and so people chip away at it. This is fine. What's problematic is when someone reads what's essentially a compass reading pointing North-ish and announces that a paper is evidence that we're at the North Pole. I had the idea that some sort of colour scheme might have one colour to indicate that Paper X is a well-designed meta-analysis and conclusions are reasonably firm and a different colour for Paper Y which reports on a small observational study that, while perfectly well designed on its own, cannot support such strong conclusions.

My blog is littered with ideas that sound great (to me) in theory but are a bit unimplentable and I suspect that this may be one of them but after I managed (top-of-the-head idea mine, actual effort in making it happen was @McDawg) to get share-buttons on PubMed I've become drunk on my own success ;)

Discussions with Jon and Adam considered whereabouts in the publication cycle this colour scheme might be employed. Authors might not be keen to have a 'lower grade' of colour, editors might not agree on the colour scheme (think food manufacturers and the traffic light system for fats and salt etc). My thinking is that it would happen post-publication, if at all.

Background
Making sense of medical research abstracts involves a variety of types of knowledge, even when the abstract's telling you stuff there are things you already need to know. Those things might include physiological facts (knowing that gastric refers to the stomach and not the leg) but perhaps more likely to trip someone up is the specialist background knowledge needed to know if the study's conclusions - or a newspaper's conclusions - can be drawn from the method.

A simple example is a study that gives 500 people a pill and measures what happens. This doesn't really confirm that any effects were due to the pill. You probably need a control group and it might be helpful to randomly assign trial participants into the 'get pill' and 'not get pill' groups. The plan is to try and compare two similar groups and make the presence or absence of the pill the only difference.

My experience of people not knowing enough about study design (and the conclusions that can reasonbly be drawn) comes from several domains.

1. People who have a health condition and want to find out about the latest research. 
These are very motivated people who often do learn a lot about research methods but I've spoken to a lot of people (in my former capacity as science info officer at a health charity) who floundered a bit. Similarly not everyone working in a health charity is confident about trial design (I nearly always had to look stuff up myself!) so a few pointers might be helpful here. I've expanded on this in a much earlier post: Might #AcademicSpring change the way in which journal articles (esp medical) are written?  (11 April 2012)

2. Newspaper reports
#NotAllNewspaperReports of course, and sometimes the text is fine but the headline lets it down. However there are plenty of newspaper reports that imply that something is more certain than it is and people are confused and misinformed.

3. Homeopathy advocates
Anyone who keeps an eye on the #homeopathy hashtag will see supporters of homeopathy adding links to various PubMed abstracts in their tweets and stating or implying that the paper proves that homeopathy is not a load of twaddle. These are often very small studies, no control group, or insufficient information about what other treatments people were having alongside. The abstracts are not strong enough to support some of the conclusions advocates make for them.

Some thoughts on literacy and health literacy

Disclaimer: All views are my own and not necessarily shared by my employers.

Following this tweet
@mjrobbins RT @fivethirtyeight Words like 'earthquake' and 'challenge' elitist as have 7+ letters - CNN "expert". http://bit.ly/cUfOZg

there's been a bit of discussion on Twitter about reading ability and literacy. I posted that I believed something like a fifth of adults had literacy problems but Ed Yong challenged that 'problem' isn't necessarily an appropriate category description and that it's more reasonable to view it as a young reading age and difficulty with certain technical words. Certainly I'd agree that I don't want to apply pejorative categories to people but I think there are people who have more serious difficulties with reading and comprehension, more serious than those with a low reading age.

In fact there are lots of categories of people who'll struggle to read practical information and advice about diabetes, or any health condition, including people who've not learned to read, people with dyslexia, people whose first language isn't English, people with learning difficulties etc. Even people with good reading skills may well struggle to read something if it's not written clearly.

A large proportion of our constituency are people from backgrounds who may not be equipped to access information easily - for this reason we have information in web and print formats, and in a variety of languages and alternative formats (eg audio for those with visual problems). Diabetes is more common among South Asian people where English may not be the first language so info is available in a variety of Asian languages, it's also more common among people with learning difficulties and so we have pictorial information available.

In 2004 an article on the BBC's news website reported that "Diabetes websites (are) too complicated". The analysis of several diabetes health websites included ours, although they called us the British Diabetic Association, and found that you'd need a reading age of about 15 to comprehend our site despite the fact that the average reading age was apparently nine years old.

Martin Robbins wondered if there comes a point where people communicating information can't really take responsibility for a lack in anyone's education - true enough we can't, but in our case we are 'the charity for people with diabetes' and have set ourselves the goal of getting our information to as many people with diabetes as possible.

There are plenty of people who have poor literacy though. According to the National Literacy Trust (2010) 'One in six people in the UK struggle with literacy. This means their literacy is below the level expected of an eleven year old' - that data comes from the 2003 DfES 'Skills for Life' report. The NLT also notes that 'the Leitch Review, found that more than five million adults lack functional literacy, the level needed to get by in life and at work.'

The National Patient Safety Agency (NPSA) has produced a number of booklets highlighting how the design of a variety of medical devices (including labelling) can affect how easy it is to follow instructions or understand what needs to be done http://www.nrls.npsa.nhs.uk/resources/collections/design-for-patient-safety/ - scroll down to see their suggestions for medicine labels (PDF).

Jama D and Dugdale G (2010) Literacy: State of the Nation: a picture of literacy in the UK today. National Literacy Trust.
http://www.literacytrust.org.uk/assets/0000/3816/FINAL_Literacy_State_of_the_Nation_-_30_March_2010.pdf

This may also be of interest:
Paasche-Orlow MK, Parker Rm, Gazmarian JA et al (2005) The prevalence of limited health literacy. Journal of General Internal Medicine 19: 1228-1239.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1490053/pdf/jgi_40245.pdf

See also

• National Forum on Information Literacy (US) http://www.infolit.org/index.html
• Patient Information Literacy (UK) http://www.informationliteracy.org.uk/Resources_By_Theme/Patient_il.aspx
• CILIP CSG Information Literacy Group (UK) http://www.informationliteracy.org.uk/CILIP_CSG_IL.aspx - I don't think it's restricted to health
• Patient Information Forum (PIF) on health literacy http://www.pifonline.org.uk/themes/health-literacy/ (health literacy isn't the same as general literacy but it's often related).