Obtaining approval to undertake research. Dilemmas facing palliative care

Barbara A. Jack, L. Chapman, J.E. Ellershaw

Research output: Contribution to conferencePaperpeer-review


Undertaking palliative care research is renowned for its difficulties particularly of recruitment, design and attrition. Furthermore palliative care researchers are faced with the challenge of obtaining informed consent from patients who are vulnerable because of their disease, with the increasing debate surrounding dual consent being obtained from patients and families. More recently researchers are faced with a problem of obtaining approval to undertake research. Major changes have taken place in the UK with the advent of Research Governance resulting in changes to guidelines regarding approval to undertake research. Although these initiatives were aimed at helping researchers it appears they are now starting to hinder. One change has been the need for ethics committee’s approval to undertake any research with staff, including using anonymous questionnaires. Additionally there is the move for researchers to attend the ethics committee meeting. As well as being time consuming this can be a threatening experience for junior researcher. Practical difficulties are emerging with approval required from research and development units. This approval includes issuing an honorary employment contract (if appropriate) and where patient contact is required criminal registration bureau checking. Finally registration of the project has to be made with the data protection department. All of which can delay research commencing. This paper will discuss the practical problems facing palliative care researchers in gaining approval to undertake research. Suggestions will be made to overcome the practical difficulties as well as the ethical issues that can hinder a project from starting.
Original languageEnglish
Publication statusPublished - 2004
Event3rd Research Forum of the European Association for Palliative Care - Stresa, Italy
Duration: 3 Jun 20046 Jun 2004


Conference3rd Research Forum of the European Association for Palliative Care


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