Insights into rare diseases from social media surveys
Abstract The internet, and social media platforms, are increasingly being used by substantial sectors of the worldwide population. By engaging effectively with online and social media, scientists and clinicians can obtain unprecedented access to relatively large cohorts of individuals with rare dise...
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| Format: | Article |
| Language: | English |
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BMC
2016-11-01
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| Series: | Orphanet Journal of Rare Diseases |
| Subjects: | |
| Online Access: | http://link.springer.com/article/10.1186/s13023-016-0532-x |
| _version_ | 1818931924121419776 |
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| author | William Davies |
| author_facet | William Davies |
| author_sort | William Davies |
| collection | DOAJ |
| description | Abstract The internet, and social media platforms, are increasingly being used by substantial sectors of the worldwide population. By engaging effectively with online and social media, scientists and clinicians can obtain unprecedented access to relatively large cohorts of individuals with rare diseases, as well as their relatives, carers and professionals involved in their healthcare. Online surveys of these stakeholder groups may provide important new insights into rare conditions and their management relatively quickly and easily, with the possibility of rapid translation into healthcare interventions and policy. Here, I describe our recent positive experience with the online survey approach to a rare disease (X-linked ichthyosis), and review its advantages and limitations. |
| first_indexed | 2024-12-20T04:24:19Z |
| format | Article |
| id | doaj.art-9b7b19a23c894584923dd652af3c9b2b |
| institution | Directory Open Access Journal |
| issn | 1750-1172 |
| language | English |
| last_indexed | 2024-12-20T04:24:19Z |
| publishDate | 2016-11-01 |
| publisher | BMC |
| record_format | Article |
| series | Orphanet Journal of Rare Diseases |
| spelling | doaj.art-9b7b19a23c894584923dd652af3c9b2b2022-12-21T19:53:33ZengBMCOrphanet Journal of Rare Diseases1750-11722016-11-011111510.1186/s13023-016-0532-xInsights into rare diseases from social media surveysWilliam Davies0Medical Research Council Centre for Neuropsychiatric Genetics and Genomics and Division of Psychological Medicine and Clinical Neurosciences, School of Medicine Cardiff UniversityAbstract The internet, and social media platforms, are increasingly being used by substantial sectors of the worldwide population. By engaging effectively with online and social media, scientists and clinicians can obtain unprecedented access to relatively large cohorts of individuals with rare diseases, as well as their relatives, carers and professionals involved in their healthcare. Online surveys of these stakeholder groups may provide important new insights into rare conditions and their management relatively quickly and easily, with the possibility of rapid translation into healthcare interventions and policy. Here, I describe our recent positive experience with the online survey approach to a rare disease (X-linked ichthyosis), and review its advantages and limitations.http://link.springer.com/article/10.1186/s13023-016-0532-xFacebookResponse biasSocial mediaSurveyTwitterX-linked ichthyosis |
| spellingShingle | William Davies Insights into rare diseases from social media surveys Orphanet Journal of Rare Diseases Response bias Social media Survey X-linked ichthyosis |
| title | Insights into rare diseases from social media surveys |
| title_full | Insights into rare diseases from social media surveys |
| title_fullStr | Insights into rare diseases from social media surveys |
| title_full_unstemmed | Insights into rare diseases from social media surveys |
| title_short | Insights into rare diseases from social media surveys |
| title_sort | insights into rare diseases from social media surveys |
| topic | Facebook Response bias Social media Survey X-linked ichthyosis |
| url | http://link.springer.com/article/10.1186/s13023-016-0532-x |
| work_keys_str_mv | AT williamdavies insightsintorarediseasesfromsocialmediasurveys |