Finding patients to take part in your smaller-scale research projects

Since I stopped working at Diabetes UK (2012, Science Info team made redundant, bygones) I have largely been out of the loop on both large-scale clinical trials and smaller-scale patient involvement with research.

There's quite an infrastructure in place for larger scale trials with clinics being recruited as enrolment centres and so on, with a readymade stream of eligible patients who can be invited to take part (they can of course say no!). There is also a variety of brokering-type arrangements where people interested in taking part in clinical trials can register with organisations and hear about trials taking place.

For smaller projects - often as part of a university course (masters / PhD) or even a funded project with a patient involvement component it can be a little harder to find patients.

Here are some suggestions on finding suitable participants

• Probably you'd need to cultivate 'gatekeepers' (community leaders, or people who are in contact with your chosen 'quarry') given that people with a given health condition are more widespread. At Diabetes UK we reached people with diabetes directly and indirectly - directly through our website and social sites (and them just getting in touch) but a hugely important route was via nurses and doctors who'd pass on our leaflets to them. This is also very useful for people who are less comfortable using online options - so GPs' / nurses surgeries and clinics are also a good place to ask, and may have a notice board (ask before pinning stuff up!)
  
• Contact the relevant patient charities and support groups (eg if you wanted 'heart patients' an obvious place to start would be the BHF, but also diabetes is a cardiovascular disease so diabetes charities also relevant). These charities often have voluntary groups which get together and raise funds and in doing so support one another, share information and have talks from researchers (you, perhaps)
  
• Have a look at research literature on similar topics and see what avenues were fruitless / fruitful. I worked on a project looking at medical device safety and colleagues worked hard to find 'people with high blood pressure' or 'people with diabetes' to take part in workshops looking at how new devices are developed - the actual device bit was fairly straightforward in comparison!
  
• Different universities have different arrangements with people 'outside' of the university (eg schools talks programmes or widening participation liaison, public lectures for adults, other public engagement activities and so on) so staff outside your department might be a useful starting point. Some unis will have a Patient and Public Involvement liaison person, or the Public Engagement team might cover this function.
  
• Some unis send round opportunities for staff to get involved in staff-run research / trials, ask if you can use that to ask staff to invite non-staff friends to get in touch.
  
• The CHAIN network (Contact, Help, Adviceand Information Network) can put you in touch with people working in health and social care, though not patients directly (again, gatekeepers).
  
• NIHR Involve supports public involvement in NHS, public health and social care research. There are also specialty groups (Eg cancer, diabetes etc) https://www.nihr.ac.uk/explore-nihr/specialties/
  
• In the wider community think about where else community noticeboards can be found - gyms, newsagents, supermarkets, libraries, town halls, community centres, faith groups etc.
  
• Community groups - these might have nothing to do with any particular health condition but cater for kids or older adults - eg Good Gym, the Shed thing for over 50s men, women's institute, film clubs, Nextdoor etc.
  
• Schools - they have children, parents and teachers some of whom might have the condition. Again another potential source of community bulletin boards!
  
• Online bulletin boards - Mumsnet etc. Also groups on Facebook and 'communities of practice' around hashtags on Twitter / Instagram.
• Write a blog post or article about your project's aims (or perhaps a series of posts) and share that link periodically on Facebook and Twitter with relevant hashtags. For Instagram use a bitly link as links aren't clickable (unless put in bio) so people will have to type in, you can also use this to see how many people are visiting the bitly link (metrics!).

PubMed is not for beginners... well, OK, maybe. Making sense of medical research.

Recently I've seen this image (from BasicBiologyBabe on Facebook) crop up a fair bit on 'skeptic Twitter' (of which I'm a member). We are the people who argue with those who claim that [X] can diagnose or cure [Y] despite no good evidence that it can. We also report misleading advertising to Advertising Standards Authority or Trading Standards etc and sometimes get claims removed and dodgy websites closed. As skeptic blogger Guy Chapman once put it we're at the intersection between science advocacy and consumer protection.

While I do try to be polite to people whose opinion differs from mine I find it pretty difficult not to be terse with people who are putting others' health at risk with their bad advice!

Transcript: "PUBMED IS NOT FOR BEGINNERS. Browsing abstracts on PubMed does not take the place of a university education in a scientific field. Experience and knowledge of context are essential to comprehension as well as reading the WHOLE GODDAMNED PAPER. Stop being dicks. - Scientists Everywhere [fb.com/BasicBiologyBabe]"

Clearly there's a big element of truth to this 'PubMed is not for beginners' idea,  but I'm not sure that this sort of advice will convince the people who might need to be convinced.

People who are promoting dangerous or ridiculous treatments or diagnostic tests (think antivaxxers, homeopathy shills, live blood analysis, tuning fork therapy etc) occasionally cherry-pick a PubMed abstract and promote the idea that it supports their favoured treatment or test. I've collected a few examples in this Storify, some are pretty funny but it's sad to think people are being so badly misled. They seem a lost cause to be honest ;)

But what about non-specialist people who have a health condition, or care for someone who does, who want to find out more? 

I'm hoping to go to an event on 'Communicating risk in health information' (London, Tue 26 Jan) which is for the subgroup of science communicator types who communicate health information. This is partly about helping non-specialist people to make sense of statistical information by helping those communicating it to express it more clearly.

A straightforward translation of 'science' to 'plain English' for an abstract (even for a whole article) will never be sufficient because an abstract or article cannot be read in isolation. Readers need to consider how it fits in with what's already known on a topic and also to know what conclusions can reasonably be drawn from a particular type of study design (how many people were involved, were they randomised etc) and just knowing lots about 'biology', for example, isn't enough. In fact it might give people a false impression of knowing / understanding.

A 2011/12 project, 'Patients Participate!', looked at ways in which patients could be more involved with health information providers (for example, medical research charities) and found that patients and the public wanted the following, which are all very reasonable -

• To find out about the latest medical research and how it relates to their health
• Accessible, plain English, searchable summaries of research articles that clearly communicate the implications and limitations of the research findings
• Information they can trust (credible, reliable and unbiased)
• To engage with researchers and research funders
• To be involved
• To learn more about research because theyare interested and they want to be better informed about the latest developments
• To help researchers be better communicators

It's hard enough to provide a dedicated abstract translation service, let alone one that takes all this into account and I don't think we've comprehensively solved that problem sustainably, though different health charities do this in their own ways.

Here's a comment I left under the picture on Facebook in response to people asking 'well OK, but where can we find this info then?' -

"Where possible I'd suggest, for medical articles, asking reputable health charities for their take on a study. Many of them have dedicated science communicators (of varying job titles) whose job it is to (a) explain the content of new studies AND (b) put it in context with other information known about the topic, as well as highlighting what conclusions can reasonably drawn from a particular study design etc.

There are certainly many efforts made to 'translate' scientific abstracts into plain English but by itself this might not be very useful, as there is usually a requirement for some background information needed, in order to know how much weight to give to some new finding."

 To which I'd add this patient-facing resource (there are other suggestions in this PDF (also linked above))

NHS Choices' Behind the Headlines - stories covered in the press might be spot on but often the end result can be that the study is a bit overhyped. The text of the newspaper article can be very good and clear, but let down by a dramatic headline. While we might all hope that everyone ignores the headline and reads the entire article I think we'd agree that's unlikely. Behind the Headlines considers the context of the story and explains the science for a non-specialist audience. It's fab.

Patients and health research findings: accessing, discovering, understanding and putting them in context

This is a shortish (well, for me) post on 'stuff I've noticed' around the theme of better access to published research, and making sense of it - with some schemes and things to keep an eye on (in a good way). It seems to me that these are things that probably need to slot nicely together at some point in the future...

In case it turns out to be a bit longer than I think it is here's some music to play in the background. A choice between Jean-Michel Jarre's Oxygene (~40m) and Subcutaneous Phat from Josh Homme's Desert Sessions 10 (~5min) depending on how fast you read.





1. Accessing / discovering research
Many research papers are behind what's called a 'paywall', that is you have to make a payment of around $40 to access the article you want to read. This cost pays in part for the journal to shepherd the article from its early days as a manuscript through to the neatly formatted end product. You can always buy an article but it's expensive and there are cheaper and free-er ways available.

Increasingly, the trend is for more papers to become free to the end user ('open access') and rather than readers paying to read the articles, the authors (through their research grant money) pay to be published. This is great for patients, though there's still a bit of ironing out of how it's all going to be paid for and you can read more about that in this post on 'Open access for the deeply confused'

Until that happens the simplest ways for getting hold of newly published research articles are likely to be along the following lines:

  (i) Google Scholar might have a copy of the paper too: http://scholar.google.co.uk/

  (ii) email the author of the paper and ask politely. If you've heard about a piece of research through a news story use the information in it (scientist's(s)' name(s), university, subject keyword, name of journal) as well as adding the search terms 'email address' to find their e-address. You can also just search for their academic page on their university which will usually have their contact details. You can get the basic citation for a paper, and the abstract, for free from PubMed too.

You're looking for the 'corresponding author', or if not obvious, the paper's first author - this information will definitely be on the journal's listing for the article, not sure if it will be on PubMed though.

  (iii) find a copy of their paper on an university repository. Many organisations that award grant money to people working on research in universities insist that a copy of any paper published that arises from the money should be made freely available. University repositories often post unformatted copies (before the journal's tweaked them) of papers as PDFs. You may also find that the author has published a copy somewhere on their own personal site, usually as a pdf so you can try adding filetype:pdf to a Google search

  (iv) If you're lucky enough to have a local library or even an academic library if there's a university or equivalent near you then it's worth asking the librarian there if they can help you get hold of a copy of the article. It may be cheaper than buying it directly from the publisher's site. Your librarian should also be able to get copies from the British Library and you can search their catalogue to see if they have the journal: explore.bl.uk 


2. Understanding the research
Published research articles can be heavy-going as they use a lot of jargon. They also use everyday terms in very precise meanings which doesn't help either. If you're lucky someone might have written a blog post explaining the science behind the article, aiming their post at a non-specialist audience - you can search for the article's name within Google's index of blogs.

PatientsParticipate! is a venture one of whose aims is to encourage medical research charities to work with patients in developing 'lay summary' (plain English summary aimed at non-specialist audiences) for research papers that the charity funds. Many charities do already make great efforts to make the work that they are funding more understandable (they have to, be hard to get funding otherwise!) but this doesn't always stretch to published articles. Get in touch with the relevant charities and see if they can help, but no guarantees as there are an awful lot of papers! The largest umbrella body for medical research charities is the Association of Medical Research Charities (AMRC) and they are also one of the partners behind PatientsParticipate!

*Update* 29 May 2013
The final published versions of the guide on writing lay summaries are now available, for printed copies for events contact info@dcc.ac.uk - see comment below

AcaWiki is an expanding list of non-specialist summaries of research articles, it's pot luck though if your article or area of interest is represented there.

If you want to help write lay summaries you might be interested in PatientsParticipate!'s guide on 'How to write lay summaries' (PDF) (annotated online draft version for comments) and there's also a science wiki from the 21st Floor which aims to "open up scientific research to the public by offering plain-language summaries of important scientific research" to which people can contribute.

3. Putting it in context
Turning complex phrases ('hyperglycaemia') into plain English ('high glucose levels in the blood', and explaining why that's a big deal) is all very well but although it's a good start it's not sufficient. A single piece of research is just part of the bigger picture and people need to know whether or not a particular research finding is relevant to them. Information about the type of research study that's been done and published, and the conclusions that can be appropriately drawn from it is very important. So rather than just the who, why, what, where, how, when you also need the 'what if', 'what's missing?' and 'does this study really show that X causes Y or just that the two are related'.

Something that looks very promising here is research being done into the development of an online patient toolkit to help patients, and people generally, make sense of a piece of research.

"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.”"

See also 
• Winner of Access to Understanding competition is announced as Europe PubMed Central and the British Library celebrate accessible, engaging science writing (11 March 2013)
• The lay summary is dead, long live the lay summary (#A2UComp) (13 March 2013) by Simon Denegri

Acknowledgements
Thanks to pals known and unknown on Twitter who retweeted my requests for info (@McDawg @pigsonthewing @mostlygeordie @Harrison_Peter @unifex @arclight @inkysloth) and made suggestions, and hopefully will continue to do so :)

This post was actually inspired by @cherrymakes writing a post explaining what Open Access is all about for people who aren't that familiar with it. I've linked to her 'new readers start here' post in mine above but here it is again for good measure: Open access for the deeply confused. It was also co-inspired by Katherine Nightingale's post for the MRC on research being done into a patient toolkit, linked above but it's here again as: Lindsay Hogg: giving power to patients

Might #AcademicSpring change the way in which journal articles (esp medical) are written?

I've been wondering what might happen if (when) access to scientific journal articles becomes common and 'normal'.

Presumably there's a gradient of 'ability to access information' as well as a gradient of 'can understand this information'. Predictably I'm all for people being able to get hold of information, but I also hope it makes sense to them and that there are people they can ask if it doesn't. There are plenty of helpful blogs and discussion forums where people can talk about articles or the evidence for particular claims. Long may it continue.

On my train journey home I wondered if, once journal article access starts to become mundanely easy for anyone, there will be a change in the way they're written - to accommodate a wider readership, particularly for medical articles.

People with a health condition are often very motivated to find out more about it and this can result in them reading original medical articles and sometimes paying for them.

Either they will or won't understand what's in the article. Someone might understand perfectly well all of the technical terms in the article but might miss something that isn't said or, for example, draw mistaken conclusions about a study in mice that might not translate into people.

Are researchers who've published on Disease X or Condition Y often contacted by people who have or care for someone with X or Y, and how do they respond? (Sometimes people will come to Patient Charity Z who've funded the research or commented on it, and ask for more info but not every condition has a dedicated patient charity and other online / offline communities are important too).

I think it will be interesting to see if articles that start to be published in a climate where they're readable by anyone will mean that they'll be written in a different style, with an eye to a non-specialist audience. This would probably make me quite happy.

There'll still be a need for people who can put things in context, even if the article's written in such a way that it doesn't need quite as much interpretation.

If journal articles are read by more people might this increase the discussions between researchers and people affected by a condition (same for non-health stuff, if people are interested in it and able to read it). Will even more scientists be writing blogs? Will they get some academic credit for doing so too? Will patients get a better understanding of their condition and / or the processes of research. Hope so.

Edit: 30 August 2012 - I've just spotted this post from Stephen Curry who, when writing a paper for the open access journal PLOS One, made the conscious effort to try and make the text easier to understand by a wider non-specialist audience. A group of school pupils in Australia took him at his word and commented on the paper's intelligibility. It turned out he'd also actually written (in The Guardian) on the issue of scientists potentially becoming more aware of the general public reading their work, perhaps because of demand from that public.

"Arguably, most members of the public would not be able to understand the primary scientific literature even if they had free access, but the mere fact of its availability – through a shift to open access – should stimulate a healthy demand from the public for more digestible reports from the scientists they support. Direct exposure of the scientific community to the public appetite for research results could even have positive effects on the formulation of research priorities."
Source: Science must be liberated from the paywalls of publishers

Further reading
Academic spring: how an angry maths blog sparked a scientific revolution The Guardian 9 April 2012 by Alok Jha

Science must be liberated from the paywalls of publishers The Guardian 10 April 2012 by Stephen Curry
Research that is funded by the public should be freely available to all - a move to open access modes of publication is overdue

Academic Spring on Wikipedia

Patients Partipate! - 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"

Concordat for Engaging the Public with Research was developed by the UK’s research funding bodies. The aim of the Concordat is to create a greater focus on and help embed public engagement with research across all disciplines in the higher education and research sectors.