A survey of patient use of social media for information about Clubfoot: The Alder Hey experience

Benjamin-Laing H, R. Everett, J. Carter, N. Garg

Background: The accessibility of information on the internet and social media has increased patient and carer access to healthcare information. Whilst previously patients were fully reliant on healthcare professionals to provide the most up to date information about their care, they are now able to access this online. Clubfoot is being increasingly detected prenatally and often affects patients throughout their lifetime. It is therefore a suitable condition to study social media use.

Method: The aim of this study was to evaluate the use of social media in patients and carers of patients with Clubfoot at a tertiary referral centre between August 2017 and February 2018. This was done using a questionnaire to evaluate patients in the outpatient setting. All patients and carers were given the option to fill in the questionnaire.

Results: Most surveys were completed by carers and a small number by patients. 90% of respondents used the internet for information about their own or their child’s condition. 75% used written forms of information. 65% used social media and 40% were part of an online support group. The leading forms of social media used were; Facebook, Instagram, Googleplus and Youtube. Participants cited the accuracy and reliability of information available as barriers against using the internet to source information about Clubfoot. 90% stated they would use Youtube videos about Clubfoot and available treatments if produced by healthcare professionals.

Conclusion: Social media platforms are being extensively used by patients and their carers as sources of healthcare information. Online information is increasingly being used over more traditional written forms of healthcare information. Our study has identified a demand by patients and carers for accurate and reliable online information about Clubfoot, in the form of educational Youtube videos produced by healthcare professionals.