It’s vital that our patients have a good experience of taking part in research.
Their input and participation is crucial to our studies, which in turn are helping to improve diagnosis, treatment and care in the NHS.
And if there are any problems, we want to hear more so we can learn from their feedback and improve what we do.
That’s why this spring we conducted our own patient survey at all the Care Organisations within the Northern Care Alliance NHS Group.
This snapshot of patient experience showed that every single respondent felt they were treated with respect and dignity by research staff and that they were given all the information they needed to decide whether or not to take part in a study.
The survey, which had more than 120 responses, also found that the majority would be happy to take part in further research.
We also asked about patients’ motivation for joining a study:
- 97 said they wanted to help others
- 64 said they wanted to help improve their condition
- 50 said they wanted to understand more about their condition
- 15 said their doctor or nurse told about it
Our survey was separate from but complementary to the annual National Institute for Health Research Clinical Research Network’s Research Participant Experience Survey.
From 2019-20, this survey has been made a Higher Level Objective by the Department of Health and Social Care in recognition of the importance of participant feedback to both the DHSC and the NIHR. This comes amid growing appreciation of the importance of access to research being routinely promoted in health – the Care Quality Commission now asks patients taking part in its Inpatient Survey whether they have been approached about research during their stay.
The latest NIHR Research Participant Experience Survey collected 8,507 responses, with 90 per cent reporting they would agree or strongly agree that they had a good experience of taking part in research and 93 per cent saying they would agree or strongly agree they were given all the information needed in relation to the study.
NCA Engagement in Research Manager Jess Zadik: “Taken together, our own survey and the NIHR’s survey paint a very positive picture of how our patients value research and the way our staff treat them with respect. It’s been great to read some of the positive comments from people who have taken part in our studies.
“But the surveys also show that we have more work to do to make research more inclusive and diverse – the vast majority of our respondents came from a White English, Welsh, Scottish or Northern Irish background.
“Conditions such as stroke, vascular dementia, diabetes, high blood pressure and kidney disease disproportionately affect people of African, African Caribbean and South Asian descent, but these groups are under-represented in research.
“Increasing diversity improves research and makes it more relevant but there is clear evidence that there are a range of barriers that need to addressed, both in how research is designed from the outset and where it is delivered, as well as broadening the demographic of who is included, which is why we are working actively with our patients, staff and other stakeholders to improve inclusion.”
Our staff will now continue to collect feedback for the NIHR Research Participant Experience Survey throughout the year and will be grateful to everyone who gives up a few minutes to give their views.