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P-68 … to publish or be damned: decision-making around patient confidentiality in case study research
  1. Steve Nolan
  1. Princess Alice Hospice, Esher, Surrey


Background As a form of qualitative research, case studies offer practitioners the possibility of contributing from their own clinical experience to innovating palliative care practice (Campbell, 2013). However, clinical information must be used sensitively and must protect patient confidentiality (UK Board of Healthcare Chaplaincy, 2014). Best practice dictates gaining informed consent; however, where consent is either not possible or would not be appropriate, the anonymisation of identifying details is recognized as an alternative way to protect confidentiality. But practitioner-researchers remain ethically responsible for protecting confidentiality.

Aim To produce an algorithm that can guide would-be case study practitioner-researchers through the decision-making process about seeking informed consent and how (and whether) to proceed without it.

Methods The issue was first discussed by the Hospice Ethics Committee. This identified the range of concerns the algorithm needed to address. These concerns were discussed further by the Hospice Research Committee, which requested a draft algorithm. The draft was presented and refinements were recommended. Once accepted, the algorithm was tested against a request by the Hospice Chaplain to publish a case study.

Results An algorithm was produced that guides the would-be practitioner-researcher through the decision-making process about seeking informed consent towards case study publication. Beginning with the question, ‘Is the subject able to give consent?’ the flowchart guides practitioner-researchers step-by-step through a series of ‘pinch-points’ in making their decision, highlighting key questions that need to be considered. These include: whether the subject has capacity; the appropriateness of requesting consent from the subject or their relative; whether the case can be suitability anonymised; and how to respond to organisational peer-review.

Conclusions The algorithm is an effective tool that guides practitioner-researchers step-by-step through the process of deciding whether they can proceed to publish clinical case material while properly respecting patients’ confidentiality.

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