ABSTRACT
OBJECTIVE: Communicating treatment risks and benefits to patients and their carers is central to clinical practice in modern healthcare. We investigated the challenges of risk communication by clinicians offering thrombolytic therapy for hyperacute stroke where treatment must be administered rapidly to maximise benefit. METHOD: Semistructured interviews with 13 clinicians from three acute stroke units involved in decision making and/or information provision about thrombolysis. We report on clinicians' accounts of communicating risks and benefits to patients and carers. Framework analysis was employed. RESULTS: We identified the major challenges facing clinicians in communicating risk in this context that is, disease complexity, patients' capacity and time constraints, and communicating quality of life after stroke. We found significant variation in the data on risks and benefits that clinicians provide, and ways these were communicated to patients. Clinicians' communication strategies varied and included practices such as: a phased approach to communicating information, being responsive to the patient and family and documenting information they gave to patients. CONCLUSIONS: Risk communication about thrombolysis involves complex uncertainties. We elucidate the challenges of effective risk communication in a hyperacute setting and identify the issues regarding variation in risk communication and the use of less effective formats for the communication of numerical risks and benefits. The paper identifies good practice, such as the phased transfer of information over the care pathway, and ways in which clinicians might be supported to overcome challenges. This includes standardised risk and benefit information alongside appropriate personalisation of risk communication. Effective risk communication in emergency settings requires presentation of high-quality data which is amenable to tailoring to individual patients' circumstances. It necessitates clinical skills development supported by personalised risk communication tools.
Subject(s)
Communication , Decision Making , Patient Education as Topic , Stroke/drug therapy , Thrombolytic Therapy , Attitude of Health Personnel , Hospital Units , Humans , Informed Consent , Interviews as Topic , Patient Participation , Physician-Patient Relations , Practice Patterns, Physicians' , Professional-Family Relations , Risk Assessment , United KingdomABSTRACT
Contemporary bioscience is seeing the emergence of a new data economy: with data as its fundamental unit of exchange. While sharing data within this new 'economy' provides many potential advantages, the sharing of individual data raises important social and ethical concerns. We examine ongoing development of one technology, DataSHIELD, which appears to elide privacy concerns about sharing data by enabling shared analysis while not actually sharing any individual-level data. We combine presentation of the development of DataSHIELD with presentation of an ethnographic study of a workshop to test the technology. DataSHIELD produced an application of the norm of privacy that was practical, flexible and operationalizable in researchers' everyday activities, and one which fulfilled the requirements of ethics committees. We demonstrated that an analysis run via DataSHIELD could precisely replicate results produced by a standard analysis where all data are physically pooled and analyzed together. In developing DataSHIELD, the ethical concept of privacy was transformed into an issue of security. Development of DataSHIELD was based on social practices as well as scientific and ethical motivations. Therefore, the 'success' of DataSHIELD would, likewise, be dependent on more than just the mathematics and the security of the technology.
Subject(s)
Biomedical Research , Computer Security/legislation & jurisprudence , Computer Security/standards , Confidentiality/standards , Information Storage and Retrieval/methods , Research Design , Computer Security/ethics , Confidentiality/ethics , Confidentiality/legislation & jurisprudence , Ethics Committees , Humans , ResearchABSTRACT
UNLABELLED: The paper provides detailed descriptions of general practitioners (GPs') interactions, both with their computers and their patients, with the aim of facilitating the detailed understanding of how GPs use their computers while in consultation with patients. The focus is on the coordinated activities of the doctor and patient and the multitasking that is required during consultation. The data consists of primary care doctor-patient consultations for asthma and angina where clinical scenarios, supported by dummy electronic and paper records for use by the doctor, were played out. Although not 'naturally occurring', the mock scenario is a traditional medical training technique. OBJECTIVE AND METHODS: This paper describes and demonstrates a data transcription methodology, involving seven discrete levels of activities, developed to account for the intricate multitasking that occurs in a GP consultation. The transcription method, developed to support the evaluation of a prototype medical prescribing decision support system (Prodigy) for use by general practitioners in consultation with patients, builds on data description techniques from conversation analysis (CA) and video analysis (VA). CONCLUSIONS: It is suggested that the methodology described could also be applicable to other scenarios involving the observation of human-computer-human interaction.
