Can Do Health & Care - NHS Uncomfortable Truths Report

24 | ICS System Learning: Uncomfortable Truths Research does not always take place where the highest burden of disease is. For example there is a high elderly population locally, lots of rural and coastal communities, but a lot of research might be centred around teaching hospitals and universities, so we need to ask if those communities can be fully involved in that research. We are not involving our diverse populations and therefore there are questions about the validity of that research and how we interpret results, and then apply them in health and care practice. “Data isn’t neutral, and science is always political… and that is something we could explore further.” Research needs to be accessible but also meaningful for communities, so what types of research do they want? And it is not just about participating in research it is also understanding the impact research can have on them and their communities going forward so they can see its relevance. Godwin: The uncomfortable truth is that we are not getting it right. The research sector is still uncomfortable with engaging with marginalised communities, for fear of what they are going to say or what the reception will be, or if it is going to be too much hard work. Researchers are buried in jargon and those big words that tend to alienate people who are not within the industry. “There is a history of people from marginalised communities being used as guinea pigs, and that story still permeates today so people from minority ethnic communities are very, very sceptical.” Information needs to change for them to become involved, and be targeted to the specific communities to understand the benefits for their community and for them. Ian: Until around five years ago there was no real research into the social care provider sector. It is challenging as the sector is very diverse organisationally and geographically. There are now some universities where there is specific research being carried out for example into a minimum dataset, and links between staffing levels and quality measures. What is not happening is the sector coming together and deciding what we want. There is potential benefit in becoming involved local universities in the education process, for example clinical placements, and we have done this in the past with individual partners, but we have not done it as a system. One main barrier to involving the social care sector is that it is not easy to do, excuses are made not to approach particular providers or areas, but the default should be that we are going to do it unless there is a reason not to.