There’s a hugely understandable drive to make health care centre around the person with the health condition and include them in their care, rather than place the focus on the operator of the health machinery or the accountant that balances the cash flows. There’s the recent launch of the Me First! initiative from the UK, for example, and a drive to patient-led safety campaigns (Have you washed your hands?) But is there any evidence that such approaches make a difference, and how can a systems effectively and efficiently measure such approaches, in order to check that Good Things are happening?
The bad news is that, as far as we can tell, measures of patient participation are a bit sketchy. There were 34 tools investigated, and all but two of them demonstrated either lack of psychometric validity, or missed elements that were considered essential in measuring actual patient participation. The two with some promise were still in pilot stages … either waiting to fly as beautiful examples, or crunch into the hard reality of multiple user tests .. And none dealt with young people, children and their families.
The other interesting thing the team found was the lack of correlation between patient participation and other measures of satisfaction with health care.
Which itself is a concept that’s faced, head on, by the second review. This team looked at satisfaction (the expression of how good folk thought it was) and also experience (what they believe happened) of healthcare. The authors note early on that a gratitude bias may change how respondents convert their experience into satisfaction (something we noted in our own work with cancer survivors in consultations – the least discriminatory question was “I am satisfied with the medical care I received”). There were eleven instruments* reviewed, with between 8 and 70 items in the questionnaires. Each was of moderate or better quality and reliability – and expensive to administrate – and the benefit gained from the information received was not quantified. Again, none dealt with young people, children and their families.
What can we gain from this exploration of The World’s Highest Quality Knowledge?
Well – there’s nothing really seriously been done with CYP to guide where we can go. But that if we want to believe the same stuff works in children as in adults, we have some hefty questionnaires we can reliably wield. And we end up slightly stuck in the gap between desire, evidence and action. Again.
* It’s interesting to note the ‘Friends and Family test’, used in the NHS in England, was not one of these instruments.