It’s tricky, trying to keep the research grounded and applicable, yet robust and not swayed by anecdote. Yet when we take our findings to a stakeholder group we expect personal experience and stories and opinion on what ‘should or should not be done’ we want that to ‘test’ what has come out of data analysis or interviews – We are asking: Does this ring true? Does it surprise you? What are your key questions when presented with these findings? We are trying to ensure that we haven’t got so stuck in our research bubble that we can’t see the wood for the trees. We want people to be opinionated and disagree with us.
We recently held a meeting where we presented preliminary results from our work in the RODES study (Research into Older people with Dementia and their carers use of Emergency ambulance Services). We really hoped that with a nice mix of people – carers and patient representatives, paramedics, community care staff – domiciliary carers and therapists, commissioners and a couple of researchers from outside our research group this meeting would help us define the ultimate research question for the next step in our research.
We want questions, but our stakeholders have answers and ideas, they come up with solutions to the issues we have raised. “Stop” we cry, “stop doing, we need to research this first”, but do they really need to stop?
What the event does for us is give us a deadline to get some results out. We can share preliminary findings with people in a format they are more familiar with (i.e. not academic journals), if we were only prepared to wait until published our local commissioners, and service providers might never have come across the paper that shows 1/3 of emergency ambulance callouts are to people over 75 and 15% of them have dementia recorded (we thought that was higher than we expected, some of our groups thought it seemed low). In fact it was in line with dementia prevalence estimates from CFAS II – CFAS are the Cognitive Function and Ageing Studies, large UK-based longitudinal multicentre studies looking at health and cognitive function in older people. We were interested to note that paramedics are clearly recording dementia even though there is not a specific place on the patient care record (PCR) and it is not the main reason for the 999 call.
Another finding we were able to share was the process of finding out this information. Ambulance service PCRs are a combination of paper and electronic records (ePCRs). Some crews use the paper some the electronic Toughbook. Our initial audit extracted non-patient identifiable information from paper PCRs. At the stakeholder event paramedics told us that if the person was going to be taken to hospital they would be more likely to use the ePCR but if at staying home they’d be more likely to use the paper record. We tested this out with ambulance service audit data for paper and electronic. It was true, there were significant differences between the ‘treated and discharged’ rates – 5% for ePCR, 36% for paper! We will definitely follow this up.