The following is my ‘Hot Topics’ talk on web-based PROMS (patient-related outcome measures). The presentation should be self-explanatory but if you have any questions please feel free to ask.
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I (EDSS 8.5, 9HPT 180,260) am *very strongly* with you on this GG and, as you probably realise by now, have (perhaps!) the requisite IT/coding skills.I would very much like to open a channel through which we could *talk more*
I have previously made abundantly clear on the blog my rejection of regular cognitive testing for very emotive reasons such as not wishing to contend psychologically with the evidence of creeping or acute deterioration.I concluded I was taking this stance from a position of ignorance, so took a look online at tests such as the PST. Unfortunately this casued me more concern about what is used to assess healthy, routine congnitive functioning. Is it unreasonable to assert that these tests rely on uniform and consistent western education – reading, writing, maths etc? If so, then any shortfalls in a persons education will affect results, and what if other cultural norms in terms of learning – how are they reflected in test design and implementation? I'm also concerned that cognitive testing presumes a standard, a healthy norm. Anyone who watched the Chris Packham documentary on autism will have been struck by the recruitment drive in Silicon Valley to hire people with autism and the proposition that people with autism have been essential to human development, in terms of technology for example – wouldn't have got to the moon without them!There is also the risk of backlash – joke on Facebook just this week about woman saying to doctor I'm not feeling well and being told to go off and do all the recommended things: exercise etc. But the slant is in being presented with the unreasonable, unattainable and even detrimental. Human nature: the diet(s) started with all good intention, ditto joining gym, giving up smoking etc, etc,There's the anxiety that maybe generated for patients that they are being fobbed off and not receiving the necessary level of care and assessment.There's the hurdle of being seen to be hypocritical: rather neatly evidenced by my uncle (reflecting his Lincolnshire roots) When asked to climb on to the scales, due to concern he's overweight, he reported back to the family that he looked at the nurse and felt inclined to say "Which one of us'll use it first, then duck?" I'm in support of more effective and consistent self-monitoring, and as I've emphasised previously: doing what you can to be as well as you can. For the reasons identified, I think rolling out a self-monitoring program is potentially fraught with difficulties – wish I didn't view it this way, really do!