This paper is in the following e-collection/theme issue:

Medicine 2.0: Social Media, Open, Participatory, Collaborative Medicine (1573) Participatory Medicine & E-Patients (758)

Published on in Vol 18, No 11 (2016): November

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability

Knowledge Exchange and Discovery in the Age of Social Media: The Journey From Inception to Establishment of a Parent-Led Web-Based Research Advisory Community for Childhood Disability

Authors of this article:

Dianne J Russell1, 2 Author Orcid Image ;   Jennifer Sprung1 Author Orcid Image ;   Dayle McCauley1 Author Orcid Image ;   Olaf Kraus de Camargo1, 3 Author Orcid Image ;   Francine Buchanan4 Author Orcid Image ;   Roman Gulko1 Author Orcid Image ;   Rachel Martens1 Author Orcid Image ;   Jan Willem Gorter1, 3 Author Orcid Image
Article Authors Cited by (24) Tweetations (192) Metrics

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  1. Taylor J, Pagliari C. Mining social media data: How are research sponsors and researchers addressing the ethical challenges?. Research Ethics 2018;14(2):1 View
  2. Rocha H, Savatt J, Riggs E, Wagner J, Faucett W, Martin C. Incorporating Social Media into your Support Tool Box: Points to Consider from Genetics‐Based Communities. Journal of Genetic Counseling 2018;27(2):470 View
  3. Sinclair M, McCullough J, Elliott D, Latos-Bielenska A, Braz P, Cavero-Carbonell C, Jamry-Dziurla A, João Santos A, Páramo-Rodríguez L. 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. Journal of Medical Internet Research 2019;21(11):e15847 View
  4. Elliott S, Dyson M, Wilkes G, Zimmermann G, Chambers C, Wittmeier K, Russell D, Scott S, Thomson D, Hartling L. Considerations for Health Researchers Using Social Media for Knowledge Translation: Multiple Case Study. Journal of Medical Internet Research 2020;22(7):e15121 View
  5. Fontaine G, Maheu-Cadotte M, Lavallée A, Mailhot T, Rouleau G, Bouix-Picasso J, Bourbonnais A. Communicating Science in the Digital and Social Media Ecosystem: Scoping Review and Typology of Strategies Used by Health Scientists. JMIR Public Health and Surveillance 2019;5(3):e14447 View
  6. Kühnle L, Mücke U, Lechner W, Klawonn F, Grigull L. Development of a Social Network for People Without a Diagnosis (RarePairs): Evaluation Study. Journal of Medical Internet Research 2020;22(9):e21849 View
  7. Currie G, Szabo J. “It is like a jungle gym, and everything is under construction”: The parent's perspective of caring for a child with a rare disease. Child: Care, Health and Development 2019;45(1):96 View
  8. Tsang V, Chew S, Junker A. Facilitators and barriers to the training and maintenance of young persons’ advisory groups (YPAGs). International Journal of Pediatrics and Adolescent Medicine 2020;7(4):166 View
  9. Appleby B, Cowdell F, Booth A. Knowledge mobilization in bridging patient‐practitioner‐researcher boundaries: A systematic integrative review. Journal of Advanced Nursing 2021;77(2):523 View
  10. Maitra C, Rowley J. Using a social media based intervention to enhance eye health awareness of members of a deprived community in India. Information Development 2022;38(3):438 View
  11. Sivaratnam S, Hwang K, Chee-A-Tow A, Ren L, Fang G, Jibb L. Using Social Media to Engage Knowledge Users in Health Research Priority Setting: Scoping Review. Journal of Medical Internet Research 2022;24(2):e29821 View
  12. Pozniak K, Buchanan F, Cross A, Crowson J, Galuppi B, Grahovac D, Gorter J, Hlyva O, Ketelaar M, Kraus de Camargo O, Krpan Mesic M, Martens R, McCauley D, Nguyen L, Palisano R, Phoenix M, Putterman C, Rosenbaum P, Sprung J, Strohm S, Teplicky R, Thomson D, Wright M. Building a culture of engagement at a research centre for childhood disability. Research Involvement and Engagement 2021;7(1) View
  13. Milios A, Xiong T, McEwan K, McGrath P. Personality, Attitudes, and Behaviors Predicting Perceived Benefit in Online Support Groups for Caregivers: Mixed Methods Study. JMIR Nursing 2022;5(1):e36167 View
  14. Richards A, Raymond-Flesch M, Hughes S, Zhou Y, Koester K. Lessons Learned with a Triad of Stakeholder Advisory Boards: Working with Adolescents, Mothers, and Clinicians to Design the TRUST Study. Children 2023;10(3):483 View
  15. Wang L, Micsinszki S, Goulet‐Barteaux M, Gilman C, Phoenix M. Youth and family engagement in childhood disability evidence syntheses: A scoping review. Child: Care, Health and Development 2023;49(1):20 View
  16. Fu H, Oh S. Online community development in the early stages: the life cycle model application to Medical Sciences Stack Exchange. Aslib Journal of Information Management 2022;74(6):1214 View
  17. KARAKUL A, DOĞAN P. 6-24 Ay Bebeği Olan Annelerin Ek Besin Tercihlerinde Sosyal Medya Kullanma Durumları ve Etkileyen Faktörlerin Belirlenmesi. Gümüşhane Üniversitesi Sağlık Bilimleri Dergisi 2021;10(4):902 View
  18. Al-Zoubi S, Al-Zoubi S. The portrayal of persons with disabilities in Arabic drama: A literature review. Research in Developmental Disabilities 2022;125:104221 View
  19. Mensah-Gourmel J, Bourgain M, Kandalaft C, Chatelin A, Tissier O, Letellier G, Gorter J, Brochard S, Pons C, Benyahia A, Bréchoire I, Julia P, Nguyen-Luong T, Mirlesse P, Studenik T, Loriot S, Tesar B, Le Menn N, Gayon T, Genot A, Ropars J, Newman C, Paradis J, Houx L, Bailly R, Venineaux M. Starting from the needs: what are the appropriate sources to co-create innovative solutions for persons with disabilities?. Disability and Rehabilitation: Assistive Technology 2024;19(3):623 View
  20. Fedorowicz S, Riley V, Cowap L, Ellis N, Chambers R, Grogan S, Crone D, Cottrell E, Clark‐Carter D, Roberts L, Gidlow C. Using social media for patient and public involvement and engagement in health research: The process and impact of a closed Facebook group. Health Expectations 2022;25(6):2786 View
  21. Sinclair M, McCullough J, Elliott D, Braz P, Cavero-Carbonell C, Dornan L, Jamry-Dziurla A, João Santos A, Latos-Bieleńska A, Machado A, Páramo-Rodríguez L. Using Social Media as a Research Tool for a Bespoke Web-Based Platform for Stakeholders of Children With Congenital Anomalies: Development Study. JMIR Pediatrics and Parenting 2021;4(4):e18483 View
  22. Nguyen L, Davis H, Bellefeuille S, Havens J, Jack S, Di Rezze B, Ketelaar M, Gorter J. Canadian Resources for Siblings of Youth With Chronic Health Conditions to Inform and Support With Healthcare Management: A Qualitative Document Analysis. Frontiers in Rehabilitation Sciences 2021;2 View
  23. Gruebner O, van Haasteren A, Hug A, Elayan S, Sykora M, Albanese E, Naslund J, Wolf M, Fadda M, von Rhein M. Digital Platform Uses for Help and Support Seeking of Parents With Children Affected by Disabilities: Scoping Review. Journal of Medical Internet Research 2022;24(12):e37972 View