The Voice

silence-the-voice-of-the-customer

Don’t worry, this is not a request for audition to a popular television programme but rather a reference to some recently published research that was brought to my attention.

An article was published in the Journal of Parkinson’s Disease and the ‘story’ was picked up by several newspapers and magazines but I have to say, it left me non-plussed.  My first reaction was ‘everyone knows that’ – what a disgrace, when I am a scientist!

The headline news was “Cognitive impairment could affect the conversational ability of people with Parkinson’s more than physical speech problems”.  Spending time with my Mum is enough for me to know that she has days when searching for words and stringing them together to have a conversation has far more to do with working through the ‘brain fog’ than any physical difficulty with actually speaking.  As with most PWP, there are good days and other not-so-good days.

The abstract for the research can be accessed here (the full article is to be paid for unfortunately).  In summary, the researchers from the UAE undertook a systematic review of published research. This is because the focus of many studies into communication difficulties for PWPs is mainly on the physical aspects, looking at the motor impairment to speech, whereas PWPs themselves reference that the difficulties are more cognitive than physical.

Five databases were searched, reviewing 5,000 studies of which 12 provided relevant data on 222 patients.  Now that this conclusion has been made from data already ‘out there’, an empirical study can be designed to specifically look into this and provide more substantive evidence on which to base treatments and support for PWP.

So why is money spent doing research to determine something that we already know?  The good news for this research is that the ‘physical’ work had already been funded and done by others, so it was mining data already available to support this hypothesis (not that it is entirely without cost but cheaper than a study!).   That’s the problem with us scientists – we need EVIDENCE – even if it’s a case of ‘everyone KNOWS that’.

If we are to move research and treatments forward, the evidence needs to be there to underpin the next study.  Research will not be funded unless there is a good foundation of scientific reasoning why we need to study ‘condition X’ or ‘theory Y’- and if no-one has published a paper telling the world what everyone with Parkinson’s already knows, then you had better get writing………

Which makes me think – I have noticed a similar thing with Mum’s hearing; it’s not that she is deaf and cannot hear but, to me, it’s the cognitive processing of the conversation thread that sometimes fails, so you have to give her time to concentrate, refocus and repeat what you’ve said.  This is purely anecdotal – I have no evidence – but that just gives me another Google search to do – and maybe again put pen to paper!

onbrand

One comment

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s