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Assessing patient, carer and public involvement in health care

Catherine Sykes

Involving patients and carers aims to be empowering and broaden participation in decision making. However, creating adequate structures and processes for involvement is still in its infancy.Clarity of the meaning of involvement can help to move patient, carer and public involvement from rhetoric to reality. This paper presents a content analysis of NHS staff ’s, patients’, carers’ and the public’s nderstanding of involvement. Six categories of involvement were identified (outcome-focused,patient-led, representative, variety of methods,feedback, those with power should be involved).The categories were used to pilot a questionnaire to measure involvement based on their understanding of involvement. A reliability analysis demonstrated good reliability. Further development is needed to assess construct validity. Feedback from those involved in piloting the questionnaire highlights that involvement is a complex process involving more than tangible outcomes. We recommend that further research is carried out to understand and assess the quality of the process of patient, carer and public involvement.