Downloaded from http://ep.bmj.com/ on November 17, 2015 - Published by group.bmj.com
Education & Practice Online First, published on March 30, 2015 as 10.1136/archdischild-2014-308100 RESEARCH IN PRACTICE
Child health research and social media Jemma Cleminson Correspondence to Dr Jemma Cleminson, Centre of Reviews and Dissemination, Alcuin B block, University of York, Heslington, York YO10 5DD, UK; [email protected], [email protected] Received 18 December 2014 Revised 10 March 2015 Accepted 12 March 2015
To cite: Cleminson J. Arch Dis Child Educ Pract Ed Published Online First: [ please include Day Month Year] doi:10.1136/archdischild2014-308100
INTRODUCTION Social media is the interaction between people via the internet to create and share content on social networking platforms. Methods of communication take several forms. Social media can enable people from a variety of backgrounds to communicate via a relatively cheap method, either openly or confidentially, not requiring face-to-face meetings. With more young people and researchers engaging in social media, it is important to consider the range of possibilities and limitations of these methods of communication between these groups.1 USE IN CONDUCTING RESEARCH Academic researchers in paediatric healthcare are recognising the potential of social media to provide a method to engage the paediatric population, relating to study design, participation, recruitment, retention and dissemination of findings, as well as providing a rich data source of information for research. Examples of recent applications to research are given in table 1.2 The EcLiPSE trial3 demonstrates the use of social media in study recruitment. It sought to improve the treatment of children with status epilepticus. Due to the emergency setting of the study, deferred consent was required. The study group conducted a qualitative study of parents of children who have experience of paediatric emergency care, to explore their views of deferred consent for trial participation. Potential participants were identified through relevant UK parent support networks. Identified gatekeepers of these support groups sent trial invitations to their members via email, websites and Facebook. From 14 support groups that sent invitations to members, 25 parents registered their interest. Children and young people can also provide beneficial contributions, insights and perspectives to the development of
research projects. The large ‘Children of the 90s’ longitudinal, four-generational study has a young person’s research advisory group that uses a private Facebook group to enable ongoing conversations between the participants and researchers to complement their regular face-to-face meetings. However, by using an online forum, there is a risk that members that do not regularly check the posts overlook some important points that are raised that would otherwise be addressed in face-to-face meetings. To overcome this, members highlight the important posts and ensure that they appear at the top of the Facebook page. This cost-efficient and time-efficient method of communication in this context has enabled the researchers to work more effectively and closely with the participants, often over long distances, thus also reducing attrition rates during the study. YouTube and Twitter are also employed to disseminate information, through links, talks and podcasts, regarding new developments.2 USE IN DISSEMINATION OF RESEARCH RESULTS Academic publishing houses and guideline developers have integrated the use of online social media to their websites to raise awareness of research activity, such as the BMJ, Lancet, Nature, National Institute for Health and Care Excellence (NICE) and the WHO. Social media may be able to provide a link between the public and these specialised scientific writings of these papers by providing linguistically and culturally acceptable summaries of current academic research, relevant to the target group. It can also facilitate real-time patient feedback and involvement, offering an opportunity for patients and families to help guide the direction of future research.1 Prior to, or post, publication, researchers are now able to invite peer review on
Cleminson J. Arch Dis Child Educ Pract Ed 2015;0:1–2. doi:10.1136/archdischild-2014-308100
1
Copyright Article author (or their employer) 2015. Produced by BMJ Publishing Group Ltd under licence.
Downloaded from http://ep.bmj.com/ on November 17, 2015 - Published by group.bmj.com
Research in practice Table 1 Examples of using social media to involve young people in research Research group
Platform
Use
Acne Priority Setting Partnership
Twitter YouTube Mobile phone technology
To identify research priorities
Queer Futures
Facebook
Involve young people in the design and delivery of research about suicide and self-harm
National Institute for Health Research Clinical Research Network Children Specialty Rheumatology Clinical Studies Group
Facebook
To ask parents and families about their priorities for research
Children of the 90s
Facebook Skype
Involve young people in a long-term research project
Cystic Fibrosis (CF) Unite
Interactive website
Involve people with cystic fibrosis in discussions about research
EcLiPSE study (part of CONNECT)
Facebook
Recruitment of trial participants
social media. Public reviews are provided in a timely manner that includes a weighted score, judged by peers, of the reputation of each peer-judged reviewer. Postpublication discussions that engage peer reviewers, patients and the general public, can provide a platform for wider debate and can trigger amendments to the original article.4 MEASURING THE IMPACT Academic papers can have a recognisable impact in the social media domain. The conventionally used Citation Index can be considered inadequate to sufficiently quantify this as it is a measure of citations rather than readers. An additional approach is the use of altmetrics. This method studies the scholarly impact and influence within online environments. Measures include those such as view count, magnitude of discussion generated (including sharing among networks) and number of downloads. It acknowledges the number of citations not only in academic journals but also in social media platforms. Given that computer programs can automatically promote publications in social media, and the scientific value of these alternative measures is under debate, a universal measure has not yet been widely adopted. Recognising the engagement of child health researchers and the public within social media, this system of measurement may be assessing the societal rather than scientific impacts of child health research.4 5 LIMITATIONS When using social media, there are several limitations to consider. First, issues can arise relating to legal
2
ownership and sharing responsibilities of intellectual property and confidential information. Once in the public domain, the information is potentially subject to misuse and misinterpretation due to the lack of regulation of the content of the internet in real time and the promotion of factually incorrect or illicit information. The interpretation of the original report of health research can also be influenced by its apparent ‘popularity’ in social media. When generating audience and broadcasting information, researchers need to acknowledge the vast amount of information in the online domain, and a need to break through the ‘noise’ of information overload and form a system of information management. It is important to keep the message simple, focused and interesting, and to allow time and flexibility in order to generate and maintain interest.2 Most importantly, the consideration of online safety and ethics for young people is paramount. Prior to proceeding with active involvement of children and young people in social media for academic purposes, it is advisable to consult the National Institute for Health Research INVOLVE guideline and to discuss plans with the local research ethics committee.
CONCLUSION Given the increasing use of social media by the paediatric population and their families, the use of these platforms will be important in future paediatric health-related research. The provision to the general public of easily accessible and available summaries of good quality, up-to-date research through social media may provide a source of reliable health information for patients seeking advice, novel interventions and new management strategies. Twitter Follow Jemma Cleminson at @JemmaCleminson Competing interests None. Provenance and peer review Commissioned; externally peer reviewed.
REFERENCES 1 Moorhead SA, Hazlett DE, Harrison L, et al. A new dimension of health care: systematic review of the uses, benefits, and limitations of social media for health communication. J Med Internet Res 2013;15:e85. 2 INVOLVE. Guidance on the use of social media to actively involve people in research. NIHR, 2014. 3 Woolfall K, Young B, Frith L, et al. Doing challenging research studies in a patient-centred way: a qualitative study to inform a randomised controlled trial in the paediatric emergency care setting. BMJ Open 2014;4:e005045. 4 Pickard KT. Impact of open access and social media on scientific research. J Particip Med 2012;4:e15. 5 Priem J, Groth P, Taraborelli D. The altmetrics collection. PLoS ONE 2012;7:e48753.
Cleminson J. Arch Dis Child Educ Pract Ed 2015;0:1–2. doi:10.1136/archdischild-2014-308100
Downloaded from http://ep.bmj.com/ on November 17, 2015 - Published by group.bmj.com
Child health research and social media Jemma Cleminson Arch Dis Child Educ Pract Ed published online March 30, 2015
Updated information and services can be found at: http://ep.bmj.com/content/early/2015/03/30/archdischild-2014-308100
These include:
References
This article cites 4 articles, 1 of which you can access for free at: http://ep.bmj.com/content/early/2015/03/30/archdischild-2014-308100 #BIBL
Email alerting service
Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Topic Collections
Articles on similar topics can be found in the following collections Child health (317) Epilepsy and seizures (41) Journalology (56)
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
Education & Practice Online First, published on March 30, 2015 as 10.1136/archdischild-2014-308100 RESEARCH IN PRACTICE
Child health research and social media Jemma Cleminson Correspondence to Dr Jemma Cleminson, Centre of Reviews and Dissemination, Alcuin B block, University of York, Heslington, York YO10 5DD, UK; [email protected], [email protected] Received 18 December 2014 Revised 10 March 2015 Accepted 12 March 2015
To cite: Cleminson J. Arch Dis Child Educ Pract Ed Published Online First: [ please include Day Month Year] doi:10.1136/archdischild2014-308100
INTRODUCTION Social media is the interaction between people via the internet to create and share content on social networking platforms. Methods of communication take several forms. Social media can enable people from a variety of backgrounds to communicate via a relatively cheap method, either openly or confidentially, not requiring face-to-face meetings. With more young people and researchers engaging in social media, it is important to consider the range of possibilities and limitations of these methods of communication between these groups.1 USE IN CONDUCTING RESEARCH Academic researchers in paediatric healthcare are recognising the potential of social media to provide a method to engage the paediatric population, relating to study design, participation, recruitment, retention and dissemination of findings, as well as providing a rich data source of information for research. Examples of recent applications to research are given in table 1.2 The EcLiPSE trial3 demonstrates the use of social media in study recruitment. It sought to improve the treatment of children with status epilepticus. Due to the emergency setting of the study, deferred consent was required. The study group conducted a qualitative study of parents of children who have experience of paediatric emergency care, to explore their views of deferred consent for trial participation. Potential participants were identified through relevant UK parent support networks. Identified gatekeepers of these support groups sent trial invitations to their members via email, websites and Facebook. From 14 support groups that sent invitations to members, 25 parents registered their interest. Children and young people can also provide beneficial contributions, insights and perspectives to the development of
research projects. The large ‘Children of the 90s’ longitudinal, four-generational study has a young person’s research advisory group that uses a private Facebook group to enable ongoing conversations between the participants and researchers to complement their regular face-to-face meetings. However, by using an online forum, there is a risk that members that do not regularly check the posts overlook some important points that are raised that would otherwise be addressed in face-to-face meetings. To overcome this, members highlight the important posts and ensure that they appear at the top of the Facebook page. This cost-efficient and time-efficient method of communication in this context has enabled the researchers to work more effectively and closely with the participants, often over long distances, thus also reducing attrition rates during the study. YouTube and Twitter are also employed to disseminate information, through links, talks and podcasts, regarding new developments.2 USE IN DISSEMINATION OF RESEARCH RESULTS Academic publishing houses and guideline developers have integrated the use of online social media to their websites to raise awareness of research activity, such as the BMJ, Lancet, Nature, National Institute for Health and Care Excellence (NICE) and the WHO. Social media may be able to provide a link between the public and these specialised scientific writings of these papers by providing linguistically and culturally acceptable summaries of current academic research, relevant to the target group. It can also facilitate real-time patient feedback and involvement, offering an opportunity for patients and families to help guide the direction of future research.1 Prior to, or post, publication, researchers are now able to invite peer review on
Cleminson J. Arch Dis Child Educ Pract Ed 2015;0:1–2. doi:10.1136/archdischild-2014-308100
1
Copyright Article author (or their employer) 2015. Produced by BMJ Publishing Group Ltd under licence.
Downloaded from http://ep.bmj.com/ on November 17, 2015 - Published by group.bmj.com
Research in practice Table 1 Examples of using social media to involve young people in research Research group
Platform
Use
Acne Priority Setting Partnership
Twitter YouTube Mobile phone technology
To identify research priorities
Queer Futures
Involve young people in the design and delivery of research about suicide and self-harm
National Institute for Health Research Clinical Research Network Children Specialty Rheumatology Clinical Studies Group
To ask parents and families about their priorities for research
Children of the 90s
Facebook Skype
Involve young people in a long-term research project
Cystic Fibrosis (CF) Unite
Interactive website
Involve people with cystic fibrosis in discussions about research
EcLiPSE study (part of CONNECT)
Recruitment of trial participants
social media. Public reviews are provided in a timely manner that includes a weighted score, judged by peers, of the reputation of each peer-judged reviewer. Postpublication discussions that engage peer reviewers, patients and the general public, can provide a platform for wider debate and can trigger amendments to the original article.4 MEASURING THE IMPACT Academic papers can have a recognisable impact in the social media domain. The conventionally used Citation Index can be considered inadequate to sufficiently quantify this as it is a measure of citations rather than readers. An additional approach is the use of altmetrics. This method studies the scholarly impact and influence within online environments. Measures include those such as view count, magnitude of discussion generated (including sharing among networks) and number of downloads. It acknowledges the number of citations not only in academic journals but also in social media platforms. Given that computer programs can automatically promote publications in social media, and the scientific value of these alternative measures is under debate, a universal measure has not yet been widely adopted. Recognising the engagement of child health researchers and the public within social media, this system of measurement may be assessing the societal rather than scientific impacts of child health research.4 5 LIMITATIONS When using social media, there are several limitations to consider. First, issues can arise relating to legal
2
ownership and sharing responsibilities of intellectual property and confidential information. Once in the public domain, the information is potentially subject to misuse and misinterpretation due to the lack of regulation of the content of the internet in real time and the promotion of factually incorrect or illicit information. The interpretation of the original report of health research can also be influenced by its apparent ‘popularity’ in social media. When generating audience and broadcasting information, researchers need to acknowledge the vast amount of information in the online domain, and a need to break through the ‘noise’ of information overload and form a system of information management. It is important to keep the message simple, focused and interesting, and to allow time and flexibility in order to generate and maintain interest.2 Most importantly, the consideration of online safety and ethics for young people is paramount. Prior to proceeding with active involvement of children and young people in social media for academic purposes, it is advisable to consult the National Institute for Health Research INVOLVE guideline and to discuss plans with the local research ethics committee.
CONCLUSION Given the increasing use of social media by the paediatric population and their families, the use of these platforms will be important in future paediatric health-related research. The provision to the general public of easily accessible and available summaries of good quality, up-to-date research through social media may provide a source of reliable health information for patients seeking advice, novel interventions and new management strategies. Twitter Follow Jemma Cleminson at @JemmaCleminson Competing interests None. Provenance and peer review Commissioned; externally peer reviewed.
REFERENCES 1 Moorhead SA, Hazlett DE, Harrison L, et al. A new dimension of health care: systematic review of the uses, benefits, and limitations of social media for health communication. J Med Internet Res 2013;15:e85. 2 INVOLVE. Guidance on the use of social media to actively involve people in research. NIHR, 2014. 3 Woolfall K, Young B, Frith L, et al. Doing challenging research studies in a patient-centred way: a qualitative study to inform a randomised controlled trial in the paediatric emergency care setting. BMJ Open 2014;4:e005045. 4 Pickard KT. Impact of open access and social media on scientific research. J Particip Med 2012;4:e15. 5 Priem J, Groth P, Taraborelli D. The altmetrics collection. PLoS ONE 2012;7:e48753.
Cleminson J. Arch Dis Child Educ Pract Ed 2015;0:1–2. doi:10.1136/archdischild-2014-308100
Downloaded from http://ep.bmj.com/ on November 17, 2015 - Published by group.bmj.com
Child health research and social media Jemma Cleminson Arch Dis Child Educ Pract Ed published online March 30, 2015
Updated information and services can be found at: http://ep.bmj.com/content/early/2015/03/30/archdischild-2014-308100
These include:
References
This article cites 4 articles, 1 of which you can access for free at: http://ep.bmj.com/content/early/2015/03/30/archdischild-2014-308100 #BIBL
Email alerting service
Receive free email alerts when new articles cite this article. Sign up in the box at the top right corner of the online article.
Topic Collections
Articles on similar topics can be found in the following collections Child health (317) Epilepsy and seizures (41) Journalology (56)
Notes
To request permissions go to: http://group.bmj.com/group/rights-licensing/permissions To order reprints go to: http://journals.bmj.com/cgi/reprintform To subscribe to BMJ go to: http://group.bmj.com/subscribe/
