Between “the best way to deliver patient care” and “chaos and low clinical value”: General Practitioners’ and Practice Managers’ views on data sharing

Petrova, Mila; Barclay, Matthew; Barclay, Scott; Barclay, Stephen

doi:10.1016/j.ijmedinf.2017.05.009

Cited by 9 publications

(11 citation statements)

References 40 publications

(45 reference statements)

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“…Strategies may include electronic coordination systems; timely, standardised discharge or outpatient summaries; and regular multi-disciplinary meetings. 52,53 Further work is needed to develop a more tailored, patient-centred approach to service design and delivery of end-of-life care. evidence for answering the review question, that is, the fitness for purpose of that form of evidence.…”

Section: Resultsmentioning

confidence: 99%

Patients’ and carers’ perspectives of palliative care in general practice: A systematic review with narrative synthesis

et al. 2018

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Although the terminology and context of general practice vary internationally, themes relating to the perceived role of general practitioners were consistent. General practitioners are considered well placed to provide palliative care due to their breadth of clinical responsibility, ongoing relationships with patients and families, and duty to visit patients at home and coordinate healthcare resources. These factors, valued by service users, should influence future practice and policy development.

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Section: Resultsmentioning

confidence: 99%

Patients’ and carers’ perspectives of palliative care in general practice: A systematic review with narrative synthesis

et al. 2018

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“…(There is a discrepancy between number of interviews and participants as some patient and carer interviews involved more than one person and the two project leads were interviewed twice; paper in preparation);No question touching on end of life care was included in the interview schedules for patient and current carers. The focus was fully on data sharing, although end of life issues were discussed when raised by interviewees. questionnaire concerning GPs’ and Practice Managers’ (PMs) familiarity, engagement with and perceptions of patient data sharing (405 responses, 64% response rate); [66] ethnographic observations , mostly from the process of developing the data sharing system, but also from use of the data sharing tools in healthcare settings; document analysis, using reports, meeting minutes and email communication of the clinical service development project.Three papers have been published from the study, [66–68] with more in preparation.While we could have attempted to represent the study as an evaluation (an exempt category), as its primary aim was to evaluate a service, we decided against this course of action. There were vulnerable individuals in our intended sample, regardless of how a study is classified relative to a debatable and often arbitrary distinction.…”

Section: Main Textmentioning

confidence: 99%

“…questionnaire concerning GPs’ and Practice Managers’ (PMs) familiarity, engagement with and perceptions of patient data sharing (405 responses, 64% response rate); [66]…”

Section: Main Textmentioning

confidence: 99%

Research approvals iceberg: how a ‘low-key’ study in England needed 89 professionals to approve it and how we can do better

Petrova

Barclay

2019

BMC Med Ethics

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BackgroundThe red tape and delays around research ethics and governance approvals frequently frustrate researchers yet, as the lesser of two evils, are largely accepted as unavoidable. Here we quantify aspects of the research ethics and governance approvals for one interview- and questionnaire-based study conducted in England which used the National Health Service (NHS) procedures and the electronic Integrated Research Application System (IRAS). We demonstrate the enormous impact of existing approvals processes on costs of studies, including opportunity costs to focus on the substantive research, and suggest directions for radical system change.Main textWe have recorded 491 exchanges with 89 individuals involved in research ethics and governance approvals, generating 193 pages of email text excluding attachments. These are conservative estimates (e.g. only records of the research associate were used). The exchanges were conducted outside IRAS, expected to be the platform where all necessary documents are provided and questions addressed. Importantly, the figures exclude the actual work of preparing the ethics documentation (such as the ethics application, information sheets and consent forms). We propose six areas of work to enable system change: 1. Support the development of a broad range of customised research ethics and governance templates to complement generic, typically clinical trials orientated, ones; 2. Develop more sophisticated and flexible frameworks for study classification; 3. Link with associated processes for assessment, feedback, monitoring and reporting, such as ones involving funders and patient and public involvement groups; 4. Invest in a new generation IT infrastructure; 5. Enhance system capacity through increasing online reviewer participation and training; and 6. Encourage researchers to quantify the approvals processes for their studies.ConclusionEthics and governance approvals are burdensome for historical reasons and not because of the nature of the task. There are many opportunities to improve their efficiency and analytic depth in an age of innovation, increased connectivity and distributed working. If we continue to work under current systems, we are perpetuating, paradoxically, an unethical system of research approvals by virtue of its wastefulness and impoverished ethical debate.

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“…Nesse contexto, o modelo de Gestão do Conhecimento se constitui em um conjunto integrado de ações para identificar, capturar, gerenciar e disseminar todo o ativo intelectual de informações de uma organização (PINHEIRO et al, 2016).…”

Section: Introductionunclassified

“…Entretanto, para a consolidação desse modelo nas organizações, uma série de desafios deve ser superada, entre eles: a criação de uma cultura organizacional de aprendizagem e de compartilhamento do conhecimento (SEN-GE, 2012; TANG, 2017); a definição de papéis de gestão do conhecimento (trabalhadores do conhecimento -diretores de gestão do conhecimento, analistas da informação, ciberoticários, mentores, entre outros) viabilizadores da mudança (BRITO; OLIVEIRA; CASTRO, 2016); o planejamento de espaços organizacionais; a criação de times multidisciplinares de aprendizagem; a consecução de práticas de gestão do conhecimento como comunidades virtuais (LARA et al, 2017); e melhores práticas de GC (PETROVA et al, 2017), entre outros.…”

Section: Introductionunclassified

Gestão Do Conhecimento Em Uma Cooperativa Médica Do Norte/Nordeste Brasileiro

Brito

Santos

El-Aouar

et al. 2017

regea

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O objetivo do estudo foi analisar o estágio da Gestão do Conhecimento (GC) na percepção de gestores e analistas de uma Cooperativa Médica do Norte/Nordeste Brasileiro. O modelo teórico utilizado foi o de Bukowitz e Williams (2002) com definição de variáveis em Brito, Oliveira e Castro (2012). Tratou-se de uma pesquisa qualitativa com modo de investigação no estudo de caso e enfoque descritivo. Os sujeitos da pesquisa foram os 24 gestores e 50 analistas da cooperativa estudada. Os dados foram coletados por meio de questionários e tratados conforme o algoritmo do modelo em planilhas eletrônicas. Os resultados sinalizaram valores superiores aos propostos por Bukowtiz e Williams (2002), demonstrando-se pela implantação da GC tanto no nível tático quanto no estratégico na organização estudada. Sendo assim, é possível observar que a organização propicia condições facilitadoras para a criação, o reconhecimento do conhecimento tácito, a disseminação e incorporação do conhecimento às tecnologias e aos produtos; entretanto, a organização não conseguiu consolidar a fase de avaliação, que é o momento em que se define o conhecimento necessário para sua manutenção no futuro.

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Between “the best way to deliver patient care” and “chaos and low clinical value”: General Practitioners’ and Practice Managers’ views on data sharing

Cited by 9 publications

References 40 publications

Patients’ and carers’ perspectives of palliative care in general practice: A systematic review with narrative synthesis

Patients’ and carers’ perspectives of palliative care in general practice: A systematic review with narrative synthesis

Research approvals iceberg: how a ‘low-key’ study in England needed 89 professionals to approve it and how we can do better

Gestão Do Conhecimento Em Uma Cooperativa Médica Do Norte/Nordeste Brasileiro

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