Tag: #upgoerfive

Acronyms and initialisms abounding

Now we’ve completed our IRAS form and been to REC, its onwards to NIHR CSP and NISCHR PCU. Hopefully the SSI we give to R&D will be OK, and once we’ve been adopted by the CRN and CRC we’ll get help from a CSO or two.

So that’s all clear then, right? Apart from ‘OK’, which I presume needs no introduction, these are acronyms and initialisms associated with the process of applying for approval to conduct research in the NHS, and getting help to recruit participants and generate data once permission has been secured. I could add that, in the case of COCAPP, we’re making these applications because we’re interested in the CPA and CTPs, and that we should probably make links with a CLAHRC, an AHSP and keep in with the RRG. And did I mention the MNM we’ve already started? You don’t know about MNM? Then read the papers coming out of RAMESES.

Of course, in writing all this I am wilfully and rather mischievously seeking to confuse. The point, though, is that words matter. Shortcuts and abbreviations can save the time of people who are already in the know, but can present an impenetrable thicket to the outsider. Perhaps the process of navigating NHS research approvals should be described using only the commonest 1,000 words in the English language.

TTFN.

What I do at work, described using only the commonest 1,000 words in the English language

Via a link in a tweet from @bengoldacre I came across the Bad Science (and now Bad Pharma) author’s secondary (!) blog, and this page in particular. Here, Ben describes how randomised controlled trials work, using the English language’s commonest 1,000 words.

The idea of making complex things simple in this way comes from Randall Munroe at http://xkcd.com, who produced the wonderful graphic I’ve reproduced here (with his permission) of how the Saturn V rocket works. Called Up Goer Five, the supporting text (as you can see for yourselves) explains things ‘using only the ten hundred words people use the most often’.

So that anyone can have a go at making difficult stuff understandable in this way, a text editor has now sprung up at http://splasho.com/upgoer5/. In goes your explanation, and if you happen to use a word from outside of the list of 1,000 commonest you’ll get a message telling you that it is not permitted. Such fun. You can also tell others of your efforts through Twitter using the #upgoerfive hashtag.

Yesterday and today I’ve been using this online tool to chip away at a description of what I do at work. It turns out that an awful lot of the words I’m fondest of fall outside of the list of those permitted. Examples include ‘process’, ‘system’, ‘nurse’, ‘health’, ‘complex’ and ‘organise’.

Anyway, here’s my effort:

For over 60 years people in this part of the world have believed that those who are sick should be looked after, without having to pay for their care at the time they need it. So to make sure there are always people around to do the job of caring, and to make sure there are places to go when we’re sick, everyone who works gives some of their money to pay for doctors, hospitals and so on. The important thing is that if you’re sick you should get the help you need, no matter how much money you have (or don’t have). I think this is a great way of doing things, and so do lots of other people.

But what do we mean by being sick, and what type of care is best? Some people have problems like their hearts not working in the way they should, or other bits of their bodies going wrong. But there are also people who have problems with how they think, feel or act when they are with others. They can get very sad, scared and worried. They can get confused, and/or hear things which aren’t really there. Families and friends get concerned when these things happen, but don’t always know what best to do. As it happens, we don’t completely know what causes these kinds of problem. It may be because something is wrong in the body, and/or it might be because bad stuff happens to people which makes them sad.

Maybe one day we’ll know much more about what causes people to be sick in these ways, and be able to help them more or even stop their problems happening in the first place. But for now, and I guess always, we need people who spend their time looking after those who get very sad, or worried, or confused, or who hear things which aren’t there. This is serious and important work, and there are lots of different types of people who do it. Those who do it as a job can be found in teams both in, and out of, hospitals. In truth, how these people and the teams they work in fit together can be really confusing. Nothing ever stands still, as new ways of getting stuff done appear.

So here’s what I do. I trained to look after people who have problems with thinking, feeling and acting and now I help to train others in this field. I also study people who do this kind of caring work, the teams they work in and what it’s like to be someone getting help. I do this because it’s important to find out how the different parts (the people, the teams) fit together, and to learn how caring work can be done in different, and maybe better, ways. Working with friends with the same interests I have used a number of approaches to study these things. I have sat with people and asked them questions about the work they do. I have read what people write about the care work they have done, and have watched people doing their day-to-day jobs. I have asked about the care work that people (like family and friends) do, and for which no-one is paid. I have asked people to tell me what it is like to get help from people in different jobs, and what it is like to have care across different teams over time. I have given people pieces of paper with questions about what they think and feel, and asked them to return their answers for us to read and study.

What have I found? The work that people do is changed by where and when they do it, and by who else is around. So you and I might think we know about the work that people in caring jobs do, but it turns out that there are lots of different ways of getting stuff done. Jobs change over time, and sometimes people do not agree who should do what. In teams, people sometimes do work which has to be done because there is no-one else to do it. I happen to think this is interesting and important, for lots of reasons. One reason is that if we don’t know what types of work people will end up doing, how do we know how best to train students? I have also found that a lot of caring work is hidden, because it is done by people who are not paid and/or who are on the edges. This is especially so in the case of people living in their own homes, and who get help from care teams which are placed outside of hospitals. Everyone thinks of doctors, but who remembers the work done by the person living next door? The way the different bits (the people, the teams) fit together means that those who are in need sometimes have problems getting the right help at the right time. And, when new teams appear, I have found that these can do great work but at the same time cause new problems to pop up somewhere else. This is because everything is joined to everything else. From studies completed with friends some years ago, I have also found that doing caring work is not easy. People who do it can get to feel very worn out.

Here is some new stuff I’m doing now. With friends I’m going to look at how people plan care, and what this means for the person who needs help. I’m also about to start a new study where we will read about young people in hospital, and how those who care for them keep them safe.