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Using Social Media as a Research Tool for a Bespoke Web-Based Platform for Stakeholders of Children With Congenital Anomalies: Development Study

Using Social Media as a Research Tool for a Bespoke Web-Based Platform for Stakeholders of Children With Congenital Anomalies: Development Study

This second paper sets out to share the overall learning from the research, technical and ethical obstacles, challenges, and successes in developing the Connect Epeople e-forum. An e-forum is defined as a “virtual space for online discussion, allowing deferred participation” [2]. The Connect Epeople e-forum was an experimental, bespoke web-based community for coproduction research, discussion, information sharing, and dissemination established within social media platforms.

Marlene Sinclair, Julie E M McCullough, David Elliott, Paula Braz, Clara Cavero-Carbonell, Lesley Dornan, Anna Jamry-Dziurla, Ana João Santos, Anna Latos-Bieleńska, Ausenda Machado, Lucía Páramo-Rodríguez

JMIR Pediatr Parent 2021;4(4):e18483

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Article has an altmetric score of 11

Exploring Research Priorities of Parents Who Have Children With Down Syndrome, Cleft Lip With or Without Cleft Palate, Congenital Heart Defects, or Spina Bifida Using ConnectEpeople: A Social Media Coproduction Research Study

Exploring Research Priorities of Parents Who Have Children With Down Syndrome, Cleft Lip With or Without Cleft Palate, Congenital Heart Defects, or Spina Bifida Using ConnectEpeople: A Social Media Coproduction Research Study

The aim of this project was to actively involve parents in setting research priorities and ensuring that research results are disseminated in a meaningful way by establishing a sustainable electronic forum (e-forum), called Connect Epeople, to provide regional, national, and international support to families through maintaining the links between the European Surveillance of Congenital Anomalies’ (EUROCAT) registries and families [17].

Marlene Sinclair, Julie EM McCullough, David Elliott, Anna Latos-Bielenska, Paula Braz, Clara Cavero-Carbonell, Anna Jamry-Dziurla, Ana João Santos, Lucía Páramo-Rodríguez

J Med Internet Res 2019;21(11):e15847

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Article has an altmetric score of 24