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1.
Eur J Hum Genet ; 29(4): 687-698, 2021 04.
Artículo en Inglés | MEDLINE | ID: mdl-33408362

RESUMEN

The complexities of the informed consent process for participating in research in genomic medicine are well-documented. Inspired by the potential for Dynamic Consent to increase participant choice and autonomy in decision-making, as well as the opportunities for ongoing participant engagement it affords, we wanted to trial Dynamic Consent and to do so developed our own web-based application (web app) called CTRL (control). This paper documents the design and development of CTRL, for use in the Australian Genomics study: a health services research project building evidence to inform the integration of genomic medicine into mainstream healthcare. Australian Genomics brought together a multi-disciplinary team to develop CTRL. The design and development process considered user experience; security and privacy; the application of international standards in data sharing; IT, operational and ethical issues. The CTRL tool is now being offered to participants in the study, who can use CTRL to keep personal and contact details up to date; make consent choices (including indicate preferences for return of results and future research use of biological samples, genomic and health data); follow their progress through the study; complete surveys, contact the researchers and access study news and information. While there are remaining challenges to implementing Dynamic Consent in genomic research, this study demonstrates the feasibility of building such a tool, and its ongoing use will provide evidence about the value of Dynamic Consent in large-scale genomic research programs.


Asunto(s)
Privacidad Genética/psicología , Genómica/métodos , Consentimiento Informado/psicología , Internet , Participación del Paciente/métodos , Privacidad Genética/normas , Humanos , Consentimiento Informado/normas , Participación del Paciente/psicología , Programas Informáticos
2.
Ann Transl Med ; 8(9): 595, 2020 May.
Artículo en Inglés | MEDLINE | ID: mdl-32566622

RESUMEN

Pediatric concussion is a growing health concern. Concussion is generally poorly understood within the community. Many parents are unaware of the signs and varying symptoms of concussion. Despite the existence of concussion management and return to play guidelines, few parents are aware of how to manage their child's recovery and return to activities. Digital health technology can improve the way this information is communicated to the community. A multidisciplinary team of pediatric concussion researchers and clinicians translated evidence-based, gold-standard guidelines and tools into a smartphone application with recognition and recovery components. HeadCheck is a community facing digital health application developed in Australia (not associated with HeadCheck Health) for management of concussion in children aged 5-18 years. The application consists of (I) a sideline concussion check and (II) symptom monitoring and symptom-targeted psychoeducation to assist the parent manage their child's safe return to school, exercise and sport. The application was tested with target end users as part of the development process. HeadCheck provides an accessible platform for disseminating best practice evidence. It provides feedback to help recognize a concussion and symptoms of more serious injuries and assists parents guide their child's recovery.

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