Background Many organisations supporting patients and families within the community, are not funded by the NHS, eg hospices. These are known as non-NHS providers and patients can either be referred or signposted to them. The number and range of non-NHS providers have grown rapidly and they receive patients from the NHS for clinical, psychological and social support. Until recently, these providers were unable or found it difficult to engage in national research. However following changes to the DHSC policy in January 2018, National Institute of Healthcare Research (NIHR) CRN support is increasingly available for research taking place in non-NHS settings.
Method VOICE was designed to test the feasibility of collecting data on referral patterns of patients by healthcare professionals to non-NHS providers, in order to develop a database of those organisations that could become involved in NIHR studies.
The feasibility study was conducted in the West Midlands CRN. Participants were invited to provide information via a website on past experiences and about their patterns of referrals or signposting patients.
Results There was a 28% response rate mostly from nurses and doctors; highest number of responses came from a district general hospital and a hospice. These identified 118 discrete non-NHS providers, with minimal overlap between respondents. They included national or local charities, as well as private providers. Supported patient groups included MND, dementia, older people, cancer support, bereavement. The virtual method of data collection worked well especially during the pandemic when face to face contact was limited.
Conclusions We have shown it is feasible to collect data on referrals to non-NHS providers of support for patients with serious illness. Establishing a national database should help to stimulate and support research in these settings. Thus, we are planning a further study to test this hypothesis in different regions of UK.
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