Stuff that occurs to me

All of my 'how to' posts are tagged here. The most popular posts are about blocking and private accounts on Twitter, also the science communication jobs list. None of the science or medical information I might post to this blog should be taken as medical advice (I'm not medically trained).

Think of this blog as a sort of nursery for my half-baked ideas hence 'stuff that occurs to me'.

Contact: @JoBrodie Email: jo DOT brodie AT gmail DOT com

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Saturday, 25 December 2010

Maximising your reach: Medical charities - If you answer public science enquiries, how do you share the answers with more people?

Every day I answer scientific / evidence-requiring questions from people with diabetes. I've done this for seven years, along with other colleagues in the Library and Information team (nee Science Information team). We have a huge 'database' of answered questions which we can draw on and update for newer similar queries.

In 2011 I'm hoping to find some way of getting some of these questions and answers 'on the web' so that others can search for them, read them and, ideally, comment on them. This may not be possible or feasible, for a variety of reasons.

I/We'd have to take time to pick out some suitable ones and make sure they're up to date before uploading them. How will we manage any follow-up enquiries that might arise from these questions and answers having been made public - assuming anyone reads them of course, but if they do, they may well have a related query of their own. How do you organise and index the information? Can people browse for all questions, is there an alphabetic listing or do people access the information via keyword search, and is the 'database' open to Google?

What about the risks of putting information on the web that can quickly become out of date? The team I'm in doesn't just answer questions, we do other things too (we provide statistical information to the rest of the organisation and train colleagues in the use of our intranet), and while we'd love to be able to have the resources to answer everyone's questions, we simply don't.

So... have you tackled something similar, and how? I'm wondering if other medical research charities (a) provide a direct or indirect enquiry service and (b) make the results available to the public? What problems might arise and how are these dealt with or pre-empted?

Note: I'm not talking about our main Careline service where people can chat with trained counsellors about anything that's worrying them about their diabetes or its care (we'll help our colleagues in Careline to answer some of the more sciencey queries, but theirs is a separate direct-to-public enquiry service).

Further background information
We don't currently have the resources to have a full-scale direct public enquiry service in our team, but queries that come in to any of our colleagues that require scientific / medical explanation or a search for evidence can be passed on to us to have a look at.

Over the years the enquiry numbers have dropped, probably because the internet makes it much easier for people to find information for themselves, and I expect this trend is common to many information services. I do wonder if people are getting really good information if they're not getting it from us (not to blow our trumpets or anything, but I think we're pretty good at finding things out and explaining it clearly), but critical appraisal of information found on the internet is a whole other blog post.

We reply either directly to the enquirer or to the colleague who originally took the enquiry. We keep our responses and refer to them for similar queries, but beyond that we don't make this content public, it's just one-to-one sharing.

I used to enjoy learning from the old NLH Q&A (ee also Wikipedia's mini article) which was similar in concept to our query service, but NLH's was for clinical questions from GPs. This was a large searchable database of enquiries which were speedily answered using the best available evidence - a good quality rapid response, but not a systematic complete answer (because the aim was to respond in a day or two). The questions were from real doctors asking about real patients.

Questions were not routinely updated and carried a warning to that effect highlighting that more up to date evidence might be available, but the information contained within the response was very helpful in signposting to further information. For example, if a reference is cited in a document written in 2007 the first thing you can do is have a look at more recently written literature which has cited that reference. Or, if NICE guidance was published in 2006 you can take an intelligent guess as to where you might go to see if it's been updated.

This wonderful service was run by Jon Brassey behind the equally fab TRIP database which makes all / most of these enquiries available and searchable by Google. If you work in the area of health communication you've probably already come across this database, which in addition to questions and answers links to a number (OK, loads) of documents which have been evaluated for their evidence quality.

Our query service isn't for medical questions from patients or GPs etc - we're not medically trained nor medical librarians but we can certainly signpost to other sources of information.

Apart from the potential problems with getting this information onto the searchable web, there are lots of great reasons to do it - and why I'm so keen. But I don't think it's sufficient merely just to dump a bunch of stuff on the web and leave it.

I suspect that the sheer range of enquiries that we have answered over the years probably exceeds the range of queries that any one individual would likely have, or come across. It would seem to be a helpful thing to make the info more widely available. I want people to be able to find information to questions that they didn't even know to look for.

Making Qs and As avaialable could increase the chance that someone with an even better response can contribute and improve the overall information. This might come from someone who has diabetes who can share their experience of something, but equally it could come from a doctor or pharmacist who might tell us about an information source that we hadn't known about. I can vividly remember the pivotal moment when I learned about the electronic Medicines Compendium (eMC) which lists every patient information leaflet inserted into the packet of medicine, as well as the much more detailed summary of product characteristics which was very useful for us. Similarly, finding out about the registers of clinical trials.

I shall add more of my thoughts here later, but a good film's just come on...

4 comments:

  1. We're currently working on it here at Cancer Research UK. We have a massive internal-use FAQ that answers a lot of common queries, and we're working on getting it up online in some form (probably in our "About us" section). CancerHelp UK already has the answers to LOADS of common cancer-related questions already, and we've addressed some issues on our blog, so we're looking more at the charity-focused ones (eg "why don't you research into X,Y,Z?" "Do you use embryos?")
    But as far as having a database goes, we don't - as such. Our team answers science enquiries from the general public, and we have a massve spreadsheet going back years with every enquiry listed, including a summary of the Q, the answer, and (where available) hyperlink to the answer we sent out. So I guess that's a kind of database.

    It's hugely time-consuming - especially in these days of emails, where it takes someone 2 mins to dash off a one line email, but it can take one of us several hours to answer it and get it signed off. We're currently thinking about how we actually do this, and what level of response is necessary. Maybe we should chat offline about it!
    K

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  2. Thanks Kat - very useful. There are even issues with confidentiality (if the question is very obscure - we've had some of those).

    I think an offline chat might be rather a good idea, perhaps in a pub somewhere :)

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  3. Also, I wonder if there might even be cross-fertilisation (eg diabetes and cancer questions). Be nice to think that something else could be extracted from charities getting this information out there.

    Really hope we (DUK) can find a way of making this work and delighted that you (CRUK) are already investigating.

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  4. Hi Jo,

    Thought provoking post! I think sharing of Q&As should be the default position and issues around how up to date things are, patient confidentiality are all issues that need some sort of pragmatic response.

    I like the idea of a central repository of Q&As from patient and clinical services. Scraping public sites makes sense to me.

    For our TRIP Answers site (www.tripanswers.org) we have a flag highlighting that something is over 2 years old. In addition, we are playing around with importing related content that can automatically introduce new research into the answer (although it's far from perfect).

    You could do what RCOG do with the inquiry service which is withdraw each answer after 6 months, I think the faculty of sexual and reproductive healthcare remove them after 2 years. All pretty arbitary.

    I really like the idea of DUK and the cancer charities getting together and agreeing a way forward. Perhaps share costs for creating a repository. But have you tried contacting NHS Choices - they might be interested in getting involved. I'd be delighted to help, where I can.

    But, as mentioned above, good quality information needs to be out there...

    Cheers

    jon

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Comment policy: I enthusiastically welcome corrections and I entertain polite disagreement ;) Because of the nature of this blog it attracts a LOT - 5 a day at the moment - of spam comments (I write about spam practices,misleading marketing and unevidenced quackery) and so I'm more likely to post a pasted version of your comment, removing any hyperlinks.

Comments written in ALL CAPS LOCK will be deleted and I won't publish any pro-homeopathy comments, that ship has sailed I'm afraid (it's nonsense).