Lindsay Hogg: Giving power to patients
by Guest Author on 6 Feb 2013
Lindsay Hogg, a science communicator turned public health researcher at the MRC/CSO Social and Public Health Sciences Unit (SPHSU) in Glasgow, is out to give people the means to assess health evidence for themselves. Katherine Nightingale talked to Lindsay about developing a toolkit to do this, and what it’s like to cross the divide into research.
We’ve all seen the newspaper headlines. “Banish high blood pressure with beetroot”, or “People who eat cheese never get diabetes”. These might be fanciful examples, but they reflect an important issue — how are people supposed to tell whether what newspapers say about health is accurate?
One way might be to look at the original research paper for themselves. But knowing what to look for once you’ve got it in your hands is another matter. This is where Lindsay Hogg’s toolkit will come in.
“More and more patients and the public are doing their own research about health. People are reading stories in newspapers, they’re looking online and they’re accessing primary research material, particularly people with a health condition who are looking for ways to manage it,” she says.
“The toolkit will help people make up their own minds about the credibility of research. I’m not saying everyone will use this but there are particular groups that will.”
Straddling the divide
Lindsay did an undergraduate degree in genetics at the University of Edinburgh and was fascinated with science. But like many people who become science communicators, she was less keen on life in the lab and more interested in finding ways to talk about science with the public.
While doing a masters in science communication with the Open University, Lindsay worked with a public engagement programme at the University of Edinburgh. This led to her joining the Glasgow Science Centre, developing exhibits and writing the text within them.
She went on to work at Sense About Science as their Assistant Director. The organisation works to help the public navigate science and evidence, pointing out misrepresentations of research in the public sphere. But hankering after life in Scotland, Lindsay eventually returned to take up a job as a researcher in the Understandings and Uses of Public Health Research programme at SPHSU.
So does she feel like she’s crossed a divide? “It’s a new challenge but it’s more like straddling two worlds. I’ve never worked in an academic environment before but the work isn’t actually so different — in some ways it’s not too dissimilar from developing an exhibition, so it feels like a natural step.”
Power to the patient
The toolkit — which will initially be in the form of a website — will help people assess the credibility of health evidence by taking them through a set of questions they should ask of a study. The questions will be tailored depending on the type of study.
“It’ll ask people how many patients were in the study, whether there’s a control group, whether the people were randomised,” says Lindsay.
There are some services already out there that appraise evidence, such as NHS Choices’ Behind the Headlines, which analyses health research that has made it into newspapers. The difference between the toolkit and these services is that people will be empowered to analyse research themselves.
“Behind the Headlines can’t cover every study,” says Lindsay “and some people don’t trust organisations. We want to give people the tools to appraise evidence themselves.”
And importantly, the toolkit can’t — and shouldn’t — tell people how to behave as a result of their findings. “It’s not about being prescriptive,” says Lindsay, “It’s simply about letting people make their own decisions.”
A window into research
As well as being helpful, Lindsay hopes that the toolkit will give people an insight into how research is carried out and how scientists reach conclusions, particularly around risk and uncertainty.
For example, the toolkit will help people to identify whether a piece of research has really found that one thing causes another, or whether they’re simply associated. Similarly, it could help people tell the difference between relative risk — how eating cheese changes your risk of disease relative to your existing risk, for example — and absolute risk over a lifetime.
“People think we shouldn’t talk about uncertainty because they’re worried about distrust. But I’ve found that when you talk to people about evidence and how it’s weighed up, people feel ok with that, because that’s what life is like.”
Lindsay and her colleagues are going to mock up a beta version of the toolkit and have involved an expert in study design to come up with lists of questions for different types of research. Once these are finalised, they’ll consult focus groups to make sure that the language is appropriate and the toolkit easy to use. The aim is to launch the toolkit in 2014.
“The focus groups will be really important because we need to know what the best way is for getting this kind of information across. In particular the words we use to talk about risk and negotiate the fine line between helpful or scary.”
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