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!).

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.

OSCHR - Office for Strategic Coordination of Health Research - more info needed

See acronym buster at end.

I was a bit surprised to discover, three weeks ago, that there was such a thing as OSCHR. It's been around since the Cooksey Report (2006, see also House of Commons Sci & Tech report) and you would think that I might have clocked its existence given that I've been working in a sphere that's at least peripherally related to health research. In fact I even spent some time in the Research Team as a grants administrator.

True, charity funded research is a bit separate from government funded research but I was still a bit surprised at my ignorance here. I wonder what else I've missed.

Anyway... as I see it OSCHR oversee the funding (both spend and decisions made) that MRC and NIHR do and it reports back to BIS and Department of Health.

From the UKCRC there's this, which explains how it all hangs together, but I still feel I need a bit more.

"In 2006, Sir David Cooksey published a review of the institutional arrangements for the public funding of health research in the UK, which proposed the establishment of the Office for Strategic Coordination of Health Research (OSCHR) to act as a central coordinating body for health research. The UK health research budget is now ring-fenced into a single fund, and OSCHR provides strategic oversight of the budgetary division and research strategy of both the Medical Research Council and National Institute for Health Research.

OSCHR reports to the Department of Health and the Department for Business, Innovation and Skills , and includes structures to allow strategic input from the devolved administrations."

I know who's on the OSCHR board and that it holds the purse strings but how does it make decisions and are there any reports more recent than the 2008 one? Presumably it puts out calls periodically for funding (or is this done via MRC / NIHR?) as a charity would, perhaps in addition to 'apply any time' grants. Does it fund anything through an acronym other than MRC / NIHR? Does it get money from anywhere other than BIS / DH?

Thank you :)

Acronym buster

BIS - Governmental Department of Business, Innovation and Skills

DH or DoH - Department of Health. I think they lost the 'o' in a reshuffle

MRC - Medical Research Council (one of 7 research councils, all fall within UKRC)

NIHR - National Institute for Health Research

OSCHR - Office for Strategic Coordination of Health Research

UKCRC - UK Clinical Research Collaboration

UKRC - UK Research Councils