Using Health Discussion Board Posts as Research Data; How Contributors View the Ethical Considerations.
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Abstract
Background
With the recent developments in the social web (web 2.0) increasing numbers of people living with a long term health condition are putting personal health information into the public domain e.g on discussion boards.
This type of interaction can feel as if it happens in a private space, the reality however is that the information shared is available to everyone, and has been put in the public rather than a private domain. As well as the primary purpose of interaction between sufferers, many such websites contain material of potential use to researchers, especially those interested in the experience of those living with a long term condition, their self management, concordance with medicine and other regimes, and interactions with healthcare professionals.
How the established principles of ethical research can, or indeed should, be applied to research happening in the ‘online world' rather than the ‘real world' is a challenge to researchers, who are adopting a wide variety of approaches. These included asking the operators of the site for permission to use data from the site for research; approaching formal ethics committees for permission; and not seeking any form of consent.
Objective
The research presented will explore the views of discussion board contributors about if and how their contributions to the boards should be used by health researchers.
The overarching question that will be addressed is: How do people living with a long term condition think researchers should treat the information they share on discussion boards?
Specifically this will include:
• How contributors view the private/public nature of online forum
• What they are happy for health researchers to do with that information
• What, if any, permission they consider should be sought by researchers, and how.
Methods
A qualitative approach has been chosen to allow exploration of the issues with participants.
A purposive sampling strategy has been adopted to ensure that both men and women contribute, and both regular and occasional posters are included. Institutional ethical review approval was obtained from Bournemouth University.
Four active diabetes discussion boards that have posts viewable with no log in or membership requirements have been identified. Board participants who allow private communication are being invited to participate in the study, with a target of 24 interviews. A semi-structured approach is being used to ensure that similarly themed information is collected from participants, whilst allowing for the flexibility to follow up interesting, pertinent, comments. The asynchronous communication will be conducted through email, allowing participants to respond within their own time, within the constraints of the research programme.
As semi structured interviews are being undertaken there will be a framework to the responses received. In recognition of this a qualitative content analysis approach to data analysis will be taken. In this approach categories are brought to the data, rather than being developed from it.
Results and Conclusions
Research in progress. Results and conclusions will be available by Medicine 2.0 2012.
With the recent developments in the social web (web 2.0) increasing numbers of people living with a long term health condition are putting personal health information into the public domain e.g on discussion boards.
This type of interaction can feel as if it happens in a private space, the reality however is that the information shared is available to everyone, and has been put in the public rather than a private domain. As well as the primary purpose of interaction between sufferers, many such websites contain material of potential use to researchers, especially those interested in the experience of those living with a long term condition, their self management, concordance with medicine and other regimes, and interactions with healthcare professionals.
How the established principles of ethical research can, or indeed should, be applied to research happening in the ‘online world' rather than the ‘real world' is a challenge to researchers, who are adopting a wide variety of approaches. These included asking the operators of the site for permission to use data from the site for research; approaching formal ethics committees for permission; and not seeking any form of consent.
Objective
The research presented will explore the views of discussion board contributors about if and how their contributions to the boards should be used by health researchers.
The overarching question that will be addressed is: How do people living with a long term condition think researchers should treat the information they share on discussion boards?
Specifically this will include:
• How contributors view the private/public nature of online forum
• What they are happy for health researchers to do with that information
• What, if any, permission they consider should be sought by researchers, and how.
Methods
A qualitative approach has been chosen to allow exploration of the issues with participants.
A purposive sampling strategy has been adopted to ensure that both men and women contribute, and both regular and occasional posters are included. Institutional ethical review approval was obtained from Bournemouth University.
Four active diabetes discussion boards that have posts viewable with no log in or membership requirements have been identified. Board participants who allow private communication are being invited to participate in the study, with a target of 24 interviews. A semi-structured approach is being used to ensure that similarly themed information is collected from participants, whilst allowing for the flexibility to follow up interesting, pertinent, comments. The asynchronous communication will be conducted through email, allowing participants to respond within their own time, within the constraints of the research programme.
As semi structured interviews are being undertaken there will be a framework to the responses received. In recognition of this a qualitative content analysis approach to data analysis will be taken. In this approach categories are brought to the data, rather than being developed from it.
Results and Conclusions
Research in progress. Results and conclusions will be available by Medicine 2.0 2012.
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