ECAE

• Research type

  Research Study

• Full title

  Equitable Care for All Ethnicities (ECAE): Improving data collection on ethnicity and religion within palliative care settings

• IRAS ID

  353259

• Contact name

  Gemma Clarke

• Contact email

  g.c.clarke@leeds.ac.uk

• Sponsor organisation

  University of Leeds

• Clinicaltrials.gov Identifier

  67644, CPMS

• Duration of Study in the UK

  1 years, 3 months, 0 days

• Research summary

  Background: There are increasing numbers of people in the UK from different religious and ethnic groups, and a growing number of people with no religion. People from diverse ethnic groups are more likely to experience poor healthcare and have serious diseases. Palliative care can help people with serious and life-limiting illnesses to manage their illness, and have better end-of-life experiences. Data on people’s ethnic group and religion can be used to monitor patterns, and make improvements to palliative and other healthcare services.

  Our team undertook a review of ethnicity data across UK palliative care. Fifty-one sites across the UK participated. The review included data from 739 patients. The results showed poor quality data:
  • 27% of patients had the wrong ethnic group recorded, or it was missing
  • 40% of patients had different ethnic groups recorded across different record systems (known as inconsistent recording), or the data was missing

  The review showed people from diverse ethnic communities were more likely to have a wrong, or inconsistently recorded, ethnic group. The results from the review also showed that around 30% of patients were too unwell to talk about their ethnicity. This is an issue in palliative care because many patients are unwell, and lose their ability to make decisions or communicate. We sent all sites a feedback survey to find out about the challenges they had collecting data. Thirty-two sites replied to the survey, they identified challenges for data collection such as: limited time, resources, knowledge and leadership.

  We have used the findings from our review of ethnicity data to start developing this project already. This project is part of a larger research project which aims to work with patients from diverse ethnic communities to design a palliative care-specific ethnicity and religion data collection guide. The study presented in this protocol will create a sample version (prototype) of the guide for testing in a further study.

  Aim: To work with patients from diverse ethnic communities to design a sample version (prototype) of a palliative care-specific ethnicity and religion data collection guide ready for testing at the next stage.

  Methods:
  • Interviews or small discussion groups with patients, family members and members of the public from different ethnic backgrounds (around 30-36 people), and around 12 interviews with healthcare professionals and workers, to find out their views.
  • Five workshops with patients, family members and healthcare professionals and workers to design a data collection guide (around 10 people per workshop), and meetings with other groups across the country to provide feedback on the development of the guide.
  • Create prototype (sample version) and apply for new ethics application as linked study to test and finalise the design.

  Output: A sample version (prototype) of the data collection guide to be tested and developed as part of a further study.
  

• REC name

  West Midlands - South Birmingham Research Ethics Committee

• REC reference

  25/WM/0101

• Date of REC Opinion

  4 Jun 2025

• REC opinion

  Further Information Favourable Opinion