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ReseArch with Patient and Public invOlvement: a realisT evaluation: the RAPPORT study
P Wilson, E Mathie, J Keenan, E McNeilly… - Health services and …, 2015 - uhra.herts.ac.uk
Background Patient and public involvement (PPI) is a prerequisite for many funding bodies
and NHS research ethics approval. PPI in research is defined as research carried out with or …
and NHS research ethics approval. PPI in research is defined as research carried out with or …
A wiki for the life sciences where authorship matters
R Hoffmann - Nature genetics, 2008 - nature.com
WikiGenes is the first wiki system to combine the collaborative and largely altruistic
possibilities of wikis with explicit authorship. In view of the extraordinary success of …
possibilities of wikis with explicit authorship. In view of the extraordinary success of …
Patient and stakeholder engagement in the PCORI pilot projects: description and lessons learned
LP Forsythe, LE Ellis, L Edmundson… - Journal of general …, 2016 - Springer
ABSTRACT BACKGROUND Patients and healthcare stakeholders are increasingly
becoming engaged in the planning and conduct of biomedical research. However, limited …
becoming engaged in the planning and conduct of biomedical research. However, limited …
Broad consent for research with biological samples: workshop conclusions
C Grady, L Eckstein, B Berkman, D Brock… - The American Journal …, 2015 - Taylor & Francis
Different types of consent are used to obtain human biospecimens for future research. This
variation has resulted in confusion regarding what research is permitted, inadvertent …
variation has resulted in confusion regarding what research is permitted, inadvertent …
The challenges of collaboration for academic and community partners in a research partnership: Points to consider
The philosophical underpinning of Community-Engaged Research (CEnR) entails a
collaborative partnership between academic researchers and the community. The …
collaborative partnership between academic researchers and the community. The …
Citizen science, public policy
CJ Guerrini, MA Majumder, MJ Lewellyn, AL McGuire - Science, 2018 - science.org
Citizen science initiatives that support collaborations between researchers and the public
are flourishing. As a result of this enhanced role of the public, citizen science demonstrates …
are flourishing. As a result of this enhanced role of the public, citizen science demonstrates …
Coordinated exploration for grand challenges: The role of advocacy groups in search consortia
Grand challenges are among the most complex problems for modern societies. Many
governments and foundations provide substantial resources to encourage the search for …
governments and foundations provide substantial resources to encourage the search for …
From invited to uninvited participation (and back?): rethinking civil society engagement in technology assessment and development
P Wehling - Poiesis & Praxis, 2012 - Springer
In recent years, citizens' and civil society engagement with science and technology has
become almost synonymous with participation in institutionally organized formats of …
become almost synonymous with participation in institutionally organized formats of …
Consent and community engagement in diverse research contexts: reviewing and develo** research and practice: participants in the community engagement and …
S Molyneux, S Bull - Journal of Empirical Research on …, 2013 - journals.sagepub.com
Consent and community engagement (CE) in health research are two aspects of a single
concern—that research is carried out in a respectful manner where social value is …
concern—that research is carried out in a respectful manner where social value is …
Understanding incidental findings in the context of genetics and genomics
MK Cho - Journal of Law, Medicine & Ethics, 2008 - cambridge.org
Human genetic and genomic research can yield information that may be of clinical
relevance to the individuals who participate as subjects of the research. However, no …
relevance to the individuals who participate as subjects of the research. However, no …