My blog yesterday, looking at the latest public poll results published by the Health Research Authority (HRA) and the National Institute of Health Research (NIHR) (https://twitter.com/sdenegri/status/971701304849522688?s=21) looked at the question it raised around diversity and inclusion.
But there are other important findings it is worth reflecting on.
That almost half of survey respondents said they think patients receive better quality care and treatment suggests that on a visceral level people get it – they understand the link between research and what happens to them if and when they become a patient. Hearts move minds and we should take encouragement from this.
But it should be a cause for concern that only 1 in 5 respondents thought that their local NHS provided opportunities to take part in research. 32% did not think opportunities were offered. And almost half simply did not know.
This in spite of the ‘right’ to information about research that’s in the NHS Constitution. Plus many years of local and national campaigning. And the hard fact that all NHS Trusts are now research active.
The work to raise awareness must continue – I have no doubt that a tipping point will come if we sustain such activity. But I suspect the real problem is that doctors are still not making research and the opportunity to take part, a feature of the routine conversation they are having with their patients; in individual consultations as well as general communications about their surgery or clinic.
The National data opt-out programme that rolls out in May may actually offer positive opportunities to talk about health research with people in the context of their care in ways we never expects. But perhaps we should also think carefully about strengthening the rights of patients in the future so that they can be expect to be assessed by their doctor for relevant and appropriate research opportunities. The fact is we also need to be making research part of the conversations people are having at home with family, friends and neighbours. Why can’t health research be a household name?
And finally the call from the public for research to focus on quality of life issues gets ever louder. But contrary to the assumption that this call will drown out the important search for new treatments or basic science, this survey shows that people are evenly split across these priorities; 58% improving quality of services; 56% developing new drugs; 49% prevention; 49% understanding the causes.
Perhaps it is the public who have a better sense of balance than the health research system. If only we were in their homes more we would probably know that.
Simon Denegri Sent from my Work iPhone
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