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

Science in London: The 2017 scientific society talks in London blog post

Friday, 21 June 2013

Nifty tool from Alzheimer's Research UK and Tilt - for people to find out more about dementia research

Tonight I took my smart casual trousers to the Royal College of Physicians to see "The Lab" which is a rather nice new website thing from Alzheimer's Research UK and developed by Tilt. They've been working on it for five months and I think they've done a really good job.




It reminded me of a really good version of Second Life. It's immersively interactive in that at the beginning you are in a virtual room - you can use the mouse scroll button to move through the room and as you do so various options pop up (not in an annoying way) and you can click on them to see more, or keep on moving around the room to see other options. There's a panel on the left which tells you where you are and what else there is to see - I suggested, though it may not be particularly useful for other people, greying out the bits that you've seen.

The Lab is all about charity science communication (yay!) and giving people information about the dementia research that Alzheimer's Research UK funds but also a 'bigger picture' overview of the different types of research that there are, such as the stages of clinical trials, what information you can get (and can't get) from animal research etc. I am hugely in favour of this sort of thing in general and I thought the layout was very good. There are five or six sections with some subdivisions and you can learn about research in fruitflies or look at the brain under a microscope.

One of the things that I thought was a particular nice touch is that if you log in with Facebook (to be honest I'd never do this myself) it will take photos of your friends and apply them to 'photo albums' on a 'table' in one part of the room. As the pages of the photo album turn your friends disappear - a poignant if slightly spooky hint of what it's like to lose people to Alzheimer's. I thought that was genius.

I do feel as a person who likes a spot of critical appraisal that I ought to find something to say that could be improved but to be honest I probably only spent half an hour with it and thought it was fab, perhaps I'll come up with other suggestions at another time. The site has been developed with people affected by dementia but I'd be interested to hear what all my HCI (human-computer interaction) and usability chums think of it as well.

One of the things I checked was to see if new stuff can be added and yes, it's customisable - that's one of the dangers of these things, that they look fab to start with but rapidly go out of date. I hope there's the infrastructure in place to keep it up to date even if staff move teams etc. On each section there's a tab marked news which will bring information that's relevant to whatever section you're in - that's a nice idea and will be easier to manage if it can be automated.

Twenty years ago I did an MSc in Neuroscience at the Institute of Psychiatry so I wanted to find out how dementia diagnosis has changed over the years. Back then I think it wasn't possible to diagnose Alzheimer's (or distinguish among the different types of dementia) without the person's brain becoming available after their death. I think I probably need to find out a bit more about the different types of tests that can be done (both verbal tests and more sensitive brain scans) but not while delightful people are offering me wine and tiny little canapes.

One thing I didn't know or had forgotten is that dementia-related damage can take several years (around 15 years) before symptoms become noticeable. This isn't too surprising as it's similar with Type 2 diabetes (in fact many people diagnosed with the condition are already experiencing the effects of complications of diabetes).

There was talk of some drugs that had looked like they might show promise but were found not to be much use when the disease state was more obvious. It's possible (by no means guaranteed) that these drugs could prove useful in arresting the early development of the condition if it can be picked up earlier, but I suppose all drug companies say that ;) Screening everyone is not a fantastic idea but in some higher risk groups it might be useful.

A couple of people were chatting about the future possibility of a blood test for dementia - this piqued my curiosity because of the blood brain barrier which tends to keep things in the brain very separate from the rest of the body. Obviously there are things that are small / fat-soluble / membrane-channel-amenable enough to go wherever they please but I've no idea what such a test might end up being and what 'thing' is being monitored. I understand there's a CSF (cerebro-spinal fluid / spinal tap) type of test available, but ugh - I can't imagine being overly in favour of that for me or any loved ones.

I also suggested, for the nerdier viewers, some links to more in-depth information. There are some fantastic pictures of cells and brain 'stuff' from the researchers that Alzheimer's UK funds with a brief explanation of what's going on. Possibly some visitors will want to know more about these, but it's good that the site isn't bogged down with too much chatter.

There's a nice video of one of the researchers going about her daily work, with purple gloves and that pinkish coloured cell medium (Dulbecco's MEM?) - made me miss working in the lab a teeny tiny bit (though my equipment was largely glassware from the 1950s as I did lipid chemistry not molecular biology).

I think that any video hosted on YouTube can be captioned, though haven't investigated it too much, but I suggested this anyway - there was music in the room so I couldn't really hear what the researcher was saying in her video. I also passed on the rather good tip I learned from Kat from Cancer Research UK which is that podcasts benefit from a transcript - for at least two reasons. One it helps people know how to spell technical terms if they want to go searching and two, it makes the content Google-searchable in a way that the audio isn't.

What remains to be seen is what do people affected by dementia think about the resource and will they use it / like it. It's true enough that lots of people with a long-term health condition are very, very interested in research (naturally many are exceptionally interested in a cure and a bit disappointed by anything that doesn't relate to that) but also many are more immediately interested in maintaining the quality of their daily life and managing their condition well.

Fingers crossed tomorrow's launch goes well and that people enjoy playing around with the new tool. Well done to Dr Laura Phipps who developed the project and also congrats to Marcus from the fundraising team who walked me through the tool and was super knowledgeable about dementia too.

Here's some other stuff I've written about charity science communication:

The Guardian have also written about the new site too
www.guardian.co.uk/society/2013/jun/21/alzheimers-research-dementia-lab


4 comments:

  1. Hi there,

    Thanks so much for writing this article. It's really great to see people engaging with the site.

    My name is Jon and I am writing from tilt who designed and built the website. Just wanted to mentioned that the URL listed above for our company is actually https://www.wearetilt.com.

    If you could change it that would be really appreciated.

    Kind Regards

    Jon

    ReplyDelete
  2. Hi there,

    Also I notice that you were chasing the URL.

    The site is live at http://www.dementialab.org

    Kind Regards

    Jon
    jon@wearetilt.com

    ReplyDelete
    Replies
    1. Thanks Jon, all links amended :)

      Delete
  3. Oh and also thank you to Alison Cranage who invited me!

    ReplyDelete

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).