There’s money to be made in flogging pills and potions (vitamins and supplements mostly) to people who aren’t very well and there’s even more money to be made from the ‘worried well’ too. Marketers promote their products to people often by being a bit evasive regarding the claims made for them.
There are plenty of dodgy websites offering miracle cures but even high street shops offer products based on evidence that isn’t quite up to scratch.
Sometimes claims are so outlandish that people might get in touch with a health charity just to find out if anything can be done to stop them (clearly they’re not falling for it) but equally, claims might be quite carefully presented to avoid falling foul of advertising regulations and include some harmless and factual statements to muddy the waters a bit.
My (Jo) concern when speaking to people with diabetes about iffy claims is that I don’t criticise the company to the point that they and their lawyers might want to have a chat with me about defamation and libel. There have been a number of high profile cases in which people who’ve provided information about the likelihood of a treatment working have found themselves at the mercy of libel suits.
Many stem cell clinics around the world, in unregulated health systems, have claimed that they can cure a variety of illnesses – they tend to use patient testimonials to convince patients that they should part with their money for this miracle treatment. Happily more and more of the clinics are being shut down and the ‘international stem cell research community’ has been pretty vocal in its criticism of unlicensed clinics offering unwarranted claims and potentially harmful treatments.
Since it’s flat out impossible to stop every misleading claim the best anyone can hope for is to make sure that people have the tools to spot unlikely claims and also know who they can ask if they have a question (and there’s a role here for medical research / patient charities as well as doctors and nurses).
Recently I came across the Quack Clinic Checklist from Dr Steven Novella and I think it makes some good points. While there will never be a one-size-fits-all checklist this is a really good and clearly written guide to some of the more obvious things to look out for (see link below).
Health charity people – how do you handle enquiries from people relating to dodgy claims? Do you refer them to their doctor / provide information on your website / answer each enquiry?
There are at least two relevant issues here and readers might think of more (and hopefully share them!).
One – the public (however defined) pays for a great deal of research and one might argue that it’s only fair they get to access the output as well as having more involvement with what gets funded.
Two – do they actually want to read the scientific literature that’s currently behind a paywall and is it understandable even if they do?
Medical research charities are probably more directly involved with the second aspect although the Wellcome Trust and Parkinson UK are explicitly in favour of open access – meaning that scientists who receive their funding must make their literature available in open access journals, or deposit a pre-publication copy in a university or other repository(see JULIET link below).
I (Jo) applaud any efforts to make information more available but providing access to the text isn’t quite the same as making it available to people who aren’t specialists.
People who have a health condition are often very knowledgeable about it and teach themselves a great deal about the condition and all the terminology that goes with it, but plenty find that they way in which papers are written is a barrier to understanding.
Patients Participate! is a a project run jointly by UKOLN, The British Library, AMRC (Association of Medical Research Charities), Sage Bionetworks, Digital Curation Centre and JISC in which patient charities who fund research can work with patients / carers and get them involved in the writing of lay summaries.
» See also “Patients Participate! Bridging the gap between information access and understanding”
Edit: 17 May 2012
I asked on Twitter if there were any examples where there were lay summaries alongside original articles and heard back from Katherine Mathieson (@Kath_Math) who highlighted Ovarian Cancer Action’s lay summary of a 9-point plan for cancer research published in Nature Reviews Cancer and @gretahughson pointing me to lay summaries from aidsmap.
In terms of being able to get hold of articles in the first place Andrew Miller (@EndoMetabPub) pointed me to patientinform.org which lists a number of publishers and health organisations (including some from the UK) who are participating in a scheme to make research articles more available at low cost and who provide lay summaries.
Elsevier also makes a number of articles available at (relatively) low cost through its Patient Research programme. I shared this with the other members of the LinkedIn group for science communicators working in medical research charities.
Research funders’ open access policies – SHERPA – JULIET
Might #AcademicSpring change the way in which journal articles (esp medical) are written? by Jo Brodie, Stuff that occurs to me blog (11 April 2012) – by me, wondering whether open access becoming the norm might alter the way in which articles are written (beyond bolt-on lay summaries but actually changing the way in which scientists communicate with each other if they’re aware that their potential audience is much larger than scientists).
Wider open spaces Times Higher Education (19 April 2012)
“Freely accessed papers are simply points in a constellation of scientific communication with the public, says Alice Bell”
Communication, communication, communication by Sylvia McLain, Occam’s Typewriter (19 April 2012)
– response to Alice’s THE post above.
The public interest argument must extend beyond open access…here’s a sort of lay summary by Simon Denegri (19 April 2012) – also in response to Alice’s post and highlighting that research funders need to involve patients in making lay summaries more readable.
“Public understanding of science will be marginally improved by better access to articles. Yet, it could be radically improved if we also saw a commitment to the writing of a good lay summary of their work and to see this appear with every published article. For some reason, funders have seemed reluctant to pay serious attention to this as an important tool to understanding science, its dissemination and impact.”
Disclaimer: These are my personal recollections of working on the islet project at Diabetes UK between 2004 and 2008 and as such any opinions, errors or omissions are mine and do not reflect any official view of Diabetes UK or anyone else involved with the project.
For my bit of the panel session on Communicating Tricky Topics at the Science Communication Conference (before the on-table discussions) I wanted to talk about a project I’d been involved in, pancreatic islet cell transplantation.
The project began in 2001 and ended in 2008 (I joined the project as the part-time Islet Project Coordinator in 2004 having already been working for a year at Diabetes UK as a Science Information Officer). It ended successfully, with the project becoming fully funded by the NHS.
Slide One – setting the scene
Islet transplantation is a surgical technique that involves the painstaking extraction of clumps of cells from the pancreas, called the islets of Langerhans (these contain the beta cells that secrete insulin, as well as other cell types), and transplanting them into someone with Type 1 diabetes.
The procedure isn’t a cure for Type 1 diabetes and is only suitable for a fairly small group of people who have Type 1. These are people who’ve stopped getting the warning symptoms that are meant to tell them their blood glucose levels are dropping – without these symptoms people are in a very perilous situation and can lose consciousness. This can be both life-limiting (needing someone around 24 hours) and life-threatening. There are many ways of helping someone with serious hypo problems but for some people, who’ve tried all the options, surgery becomes a good option.
The surgery isn’t offered as a first treatment though because, as with any transplant, the person receiving new islets will have to take antirejection medication to stop their immune system from attacking them. This carries serious risks.
The goal of the islet project to make the procedure available to more people by funding 10 transplants to provide evidence to the NHS of the benefits, relative safety and cost-effectiveness of the procedure in treating people with serious problems with low blood glucose levels. We wanted to move it from a Diabetes UK-funded pilot research project to a properly supported NHS-funded treatment.
Until we got to that point though there were limitations on the project and so we had to manage people’s expectations. Not surprisingly islet cell transplantation was enthusiastically picked up by the media and this naturally led to a lot of calls to the organisation, many of which I answered.
To start with we were only doing 10 transplants – we had raised the money for this and it was ringfenced for this purpose only. It was suitable only for a small number of people with Type 1 diabetes and it carried risks. The project was also in ‘competition’ for pancreases with the much more established whole-pancreas transplant programme – as we were a research programme and whole-pancreas transplants was a recognised treatment this made it slightly harder to get suitable organs. On top of that the pancreas is a fiddly organ to handle and there’s no guarantee that the extraction procedure will return useable islets for transplantation.
With that in mind… who did I talk to? Lots of people!
Slide Two – communicating with different audiences
People with diabetes, parents of children with diabetes, healthcare professionals, islet researchers and clinicians on the project, people from the National Specialist Commissioning Advisory Group (NSCAG), news media (indirectly through our Press team), colleagues including our fundraising teams.
The bulk of enquiries came from people with diabetes (or parents of children with the condition) and I handled each enquiry individually. This perhaps differs from other science communication or public engagement endeavours where people are engaged with as part of a group. To an extent I did that a little bit because I travelled around the country giving talks to our voluntary groups (supporters who meet regularly to discuss all matters diabetes and to which I’d occasionally be invited to speak about islet research). Mostly it was telephone chats and a little by letter too (email became more important as time went on).
One of the things we’re always very careful to make clear when speaking to people with diabetes is that we’re not medically trained and that we advise they speak with their doctor or healthcare team. With islet cell transplants it was pretty essential that their doctor referred them to a consultant (endocrinologist / diabetologist). Clearly people with diabetes would aks their doctors / consultants for information and they would then come to us to find out how to get their patients on the programme.
I also wrote information about the project for our website and members’ magazines (or would fact-check / edit the articles that others had written) and provided information for our Press team for the news media.
Because the project was large, important and newsworthy our fundraising people were naturally keen to help raise funds for it, however because we’d capped it to ten transplants this wasn’t an option. Not easy to explain that even though people were very keen to donate money to the project it wasn’t possible to accept it!
So just focusing on one group – people with diabetes & parents – what did they want information on?
Slide Three – what did enquirers want?
Were they eligible themselves?
Because I’m not medically trained I had to be very careful how I spoke to people and avoid giving medical advice that I’m not able to give. Importantly, even if I was medically trained I’d still have no business giving advice because I’m not responsible for that person’s care and don’t have access to their medical records. When you speak knowledgeably about a medical topic, and people are vulnerable and wanting a new treatment, I think it’s very important that this aspect is made very clear to them – people did mistake me for a doctor, or as someone qualified to give them a definite answer about their case.
If people had Type 2 diabetes then it was a little clearer as they were ineligible based on the criteria used to select patients for the pilot study – although even then they should still check with their doctor as some people aren’t quite sure which type of diabetes they have (to be fair some doctors aren’t sure either!).
I would explain to callers, letter-writers or emailers about the tests that they’d undergo before they could be accepted onto the programme and about the risks from the anti-rejection medication. I’d also talk to them about other things that should be investigated before going down the route of a transplant, after all the main goal was to help them with the difficulties they were having with their low glucose levels.
Could their child have a transplant?
Bluntly no, because children were excluded from this research programme partly because of the risks from the antirejection medication but also because children are much less likely to be experiencing serious low glucose levels with a lack of awareness symptoms. Still, it’s never easy to explain to distressed parents that this intervention was not a ‘treatment’ and was unlikely to benefit their child.
Could they donate their pancreas to a family member?
While living-related organ donation is increasing in popularity it’s not reallly done for the pancreas (a fiddly organ to handle) and it certainly wasn’t being done as part of the pilot programme. It’s quite possible that this would be revisited in the future but given that the pancreas is a bag of protein-munching enzymes I think you’d only cut into it if absolutely necessary. Practically a person without diabetes needs most of their own insulin-producing cells to maintain that state, but someone with Type 1 diabetes would need around two pancreases to produce sufficient living islets that survived the extraction procedure.
Could they buy a pancreas?
No, this is illegal. I found these conversations quite difficult (almost always by telephone) as some enquirers could be a bit “money is no object, just give me the number of the best surgeon” which made empathy that bit harder. However, having money doesn’t protect you from problematic health or anxieties about it so I kept that at the forefront of my mind when having these more trying conversations.
Could they have a stem cell transplant?
Islet cells and stem cells were / are easily confused – after all the principle of cell replacement is essentially the same. There have been a number of clinics around the world where stem cell transplants are offered as treatment but so far there’s no evidence that they can help or even that they’re safe. Some of the clinics have also been shut down. Predictably there are issues with people paying out large sums of money for a useless intervention that may then require ongoing NHS treatment.
Should they store their baby’s umbilical cord blood?
There have been one or two trials looking to see if someone’s own cord blood could delay the progression of newly diagnosed Type 1 diabetes but the cord blood cells are unlikely to help a sibling who already has the condition. The topic probably warrants a longer blog post of its own but it’s been overhyped by companies wishing to sell the option of storing cord blood. There was a paper recently where researchers used cord blood from healthy unrelated donors to try and help insulin-producing cells recover… interesting, but more research needed. Altruistic cord blood banking (where you donate your baby’s cord blood to a central bank for others to use) is probably the better bet.
Slide Four – some things I’ve learned about communicating tricky topics
All of these are probably pretty obvious but I don’t apologise for including them because I think they’re pretty important – feel free to add your own in the comments.
Communication can be difficult anyway
Even with straightforward topics it’s not always easy to get a shared understanding. Jargon can help or hinder – I’m a fan of using jargon, as long as it’s properly explained. The nice thing about jargon is that it flags itself up as a word or phrase that’s new and perhaps not immediately understood by everyone. Where I think problems can arise is if we use a word that has a technically precise meaning in the science or medical sphere but a different or broader meaning in the everyday sense. If you understand the word in its precise sense but the person you’re talking to understands it differently then it can be confusing.
Also people with a longterm health condition are often interested in the science / medical aspects and knowledgeable about the jargon used. Given that they may well come across these terms during their other information gathering (eg on the net) it’s helpful to include those terms and make it clear what they mean.
Be mindful of the emotional state of enquirer
You might be about to share the most clearly presented piece of information but if the person reading or listening to you is anxious or angry then they might not pick up what you’re saying (this is one of the reasons why in some situations it can be a good idea to have a friend or family member at a doctor’s appointment, to make notes and make sure everything’s covered).
It’s a good idea to check that the person understands but I think it’s better not to say “do you understand?” but rather “have I made this clear?”. At the end of an email I’d usually include something along those lines that opened the potential for dialogue a bit – I wanted to avoid closing down the conversation and just dumping information on people.
Although you are technically the expert in the exchange (you know about the topic at hand and are imparting information and knowledge) don’t forget that the person you’re speaking to is an expert in their own diabetes and experiences. Hopefully it goes without saying that it’s a bad idea to talk down to anyone.
Refresh your analogies
When you say the same thing over and over again there’s a tendency to rely on stock phrases and it’s worth being aware of that. I’ve particularly noticed this in interviews when people are a bit nervous and tend to default to familiar speech patterns. Find new ways of saying what you need to say.
Of course, now I will be re-reading this blog post over the next few days and see where I’ve failed to communicate my topic correctly 😉