Background Health and social care research has expanded beyond hospitals and GP surgeries to include hospices, charities and care homes. The NIHR has increased support for research in palliative and end of life care to support activity in this area, which includes some non-NHS organisations. However, there are challenges in setting up and undertaking research in a non-NHS setting which can present perceived barriers to participation.
Aim To identify the challenges and perceived barriers and to support organisations, including non-NHS, who wish to participate in research by providing them with knowledge, skills and tools to de-mystify and simplify the process, thus supporting them in their research participation.
Working with the Local Clinical Research Network to identify the challenges and potential barriers to setting up and undertaking research in organisations with little or no research experience, which includes some non–NHS organisations. This involved communications with all hospices within the East Midlands and asking them what they wanted and what would be useful to them;
Development of a suite of research governance Host Organisation Standard Operating Procedures to include governance arrangements for the delivery of research in a non–NHS setting;
Close collaboration with the local NHS Trust to ensure alignment of governance processes.
Conclusions Although there are challenges and perceived barriers to delivering research within a non-NHS setting, none of these are insurmountable with the correct level of support. It is important that these organisations are able to participate in research if they wish to, secure in the knowledge that they are well supported and have the appropriate arrangements in place to allow the effective and safe delivery of the research. It is also important that patients, families and healthcare professionals in palliative and end of life care organisations are offered the opportunity to participate in research if they would like to.
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