Tuesday, 15 October 2013

A Standard to be proud of.

When I was at uni, the constant cry of my lecturers was 'You can't trust everything on the internet!'

Which is true. But it would have been a little more helpful if they'd given us more guidance on how to know whether it was reliable information!

Through my work with the Hypermobility Syndromes Association (HMSA) I discovered an organisation called The Information Standard (IS)which is a certification scheme for all organisations producing evidence-based health and care information for the public.

My first introduction to it was a lecture during an HMSA staff training day. I was expecting a tedious, heavy going, try-not-to-fall-asleep-too-obviously session. What actually happened is a chap stood up came out with a few 'everybody knows that' statements - which when we actually thought about them, were either untrue, or easily misleading, or only part of the picture. And the rest was about taking a common sense, consistent approach to making sure that the info provided by an organisation (the HMSA) was accurate - for example, the information on the website is not just written from personal experience, or 'things the author knows', but is backed up by professionally researched and published information. Not only that, but it is also appropriate to it's audience - kids stuff presented in a way that kids can easily understand and absorb the information etc.

To my surprise, it was both entertaining and interesting. More importantly, it left me knowing that once the HMSA completed their process and became certified, their advice and information would be second to none. Yes, I am biased, but I have had some involvement in the IS process since with HMSA, and the level to which information is checked is impressive. Even articles which do not have long lists of references on them, if you need to query the information the HMSA has provided, they have documents tracing where the information is from so that it can be validated.

And now the HMSA has been awarded their certification. The background processes which most people will never see but which take a lot of work are in place and functioning well to ensure that the standard of information given is high. Having said that, the IS process is an ongoing one and the HMSA's information will be constantly evolving in line with medical knowledge.

Through working with the HMSA on my 3rd edition of 'You know you have HMS/EDS when...' and leaflet 'The use of splints and braces in the management of hypermobility syndromes.' (now available for advance order. Release date 26th October). I got to see first hand the level of dedication to clear and accurate information - and also the common sense approach. For example, my stickman products are effective because of their light-hearted, simple, clear approach. Trying to turn my book into a fully referenced essay would not work, so instead the HMSA holds a file which has the specific references for relevant healthcare information, and the rest of us get to enjoy the book, safe in the knowledge that it's humorous comments are medically accurate.

I am immensely thankful for and proud of the staff and volunteers who put so much time and effort into ensuring the excellent standard of information given out by the HMSA.

And honoured that my work has (with their help) been deemed to meet their standards.

Thursday, 3 October 2013

An understanding.

One of the best things about having friends with disabilities is that you can say you are doing fine and they understand. And you never have to explain why you don't have the energy for going out even when you've just said you are doing fine.

Because they know 'doing fine' means 'symptoms are within standard range considering that I've just eaten/had a shower/done the washing up/failed to sleep last night'.