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Table 5 National/international MORECare recommendations to improve the environment for development and evaluation of interventions in EoLC

From: Evaluating complex interventions in End of Life Care: the MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews

  Recommendations
Ethics 1. Create a Research Ethics Network for Palliative and End of Life care to further and disseminate best practice.
2. Train those working on ethics and research governance committees in the specific issues and wishes of patients in palliative and EoL care and their families.
3. Seek to amend the law regarding consent so that advance consent for studies other than clinical trials of medicinal products is legally effective. This would permit research among people who might develop problems with mental capacity later.
Clinician/researcher collaboration 4. Increase collaboration and understanding between clinicians and researchers in EoLC through rotations, joint departments and exchanges
5. EoLC organisations to create a research-aware culture for practitioners by informing practitioners and patients on admission to a service that the organisation is actively involved in research
6. Develop specific training for practitioners in palliative and end of life care about research practice, its value and how to recruit
7. Introduce screening questions about patient/family willingness to be approached for research (as a general principle) in routine initial assessments on entry to palliative care services
Funders 8. Develop collaboration to ensure that funding supports advancement in knowledge, where one study builds from the finding of another and there is progression to multicentre studies, full evaluations and cost effectiveness studies
9. Assess study proposals against the MORECare statement
National bodies/strategy 10. Develop repositories of routine data and from specific studies which can be used for secondary analysis to quickly answer current questions
11. Develop collaboration to take forward the MORECare statement
Journal editors/referees 12. In statistical assessment take account of the MORECare statement:
 • that attrition due to death and illness is to be expected and should be planned for when designing EoLC studies. It is not an indication of a poor study unless it is markedly different to that planned, but indicates that a relevant population of patients and families have been included, giving external validity
 • that lack of attrition or missing data is not necessarily a positive finding; it could mean the population studied is less relevant to EoLC
  13. Use MORECare statement to consider good research practice for conducting EoLC studies, alongside established checklists for reporting, for example, STROBE, CONSORT
  1. EoLC, end of life care; CONSORT, Consolidated Standsrds of Reporting Trials; MORECare, Methods of Researching End of Life Care; STROBE, Strengthening the Reporting of Observational Studies.