Stakeholders' views on data sharing in multicenter studies.
J Comp Eff Res
; 6(6): 537-547, 2017 Sep.
Article
em En
| MEDLINE
| ID: mdl-28805448
ABSTRACT
AIM:
To understand stakeholders' views on data sharing in multicenter comparative effectiveness research studies and the value of privacy-protecting methods. MATERIALS &METHODS:
Semistructured interviews with five US stakeholder groups.RESULTS:
We completed 11 interviews, involving patients (n = 15), researchers (n = 10), Institutional Review Board and regulatory staff (n = 3), multicenter research governance experts (n = 2) and healthcare system leaders (n = 4). Perceptions of the benefits and value of research were the strongest influences toward data sharing; cost and security risks were primary influences against sharing. Privacy-protecting methods that share summary-level data were acknowledged as being appealing, but there were concerns about increased cost and potential loss of research validity.CONCLUSION:
Stakeholders were open to data sharing in multicenter studies that offer value and minimize security risks.Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Pesquisadores
/
Atitude do Pessoal de Saúde
/
Disseminação de Informação
Tipo de estudo:
Clinical_trials
/
Etiology_studies
/
Health_economic_evaluation
/
Qualitative_research
/
Risk_factors_studies
Limite:
Female
/
Humans
/
Male
/
Middle aged
Idioma:
En
Ano de publicação:
2017
Tipo de documento:
Article