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The conceptual and practical ethical dilemmas of using health discussion board posts as research data.

Bond CS, Ahmed OH, Hind M, Thomas B, Hewitt-Taylor J - J. Med. Internet Res. (2013)

Bottom Line: There was no consensus on the need for permission to use individual information, such as quotations, with some people happy for this to be freely used and others feeling that permission is necessary.The Internet is a new research location, and rather than trying to apply traditional ethical norms to this new genre, a new modus operandi is required.The authors propose introducing new norms for presenting research carried out with online discussion boards.

View Article: PubMed Central - HTML - PubMed

Affiliation: School of Health and Social Care, Bournemouth University, Bournemouth, United Kingdom. cbond@bournemouth.ac.uk

ABSTRACT

Background: Increasing numbers of people living with a long-term health condition are putting personal health information online, including on discussion boards. Many discussion boards contain material of potential use to researchers; however, it is unclear how this information can and should be used by researchers. To date there has been no evaluation of the views of those individuals sharing health information online regarding the use of their shared information for research purposes.

Objective: To explore the views of contributors to online diabetes discussion boards with regards to if (and how) they feel their contributions to boards should be used by health researchers.

Methods: A qualitative approach was employed using online semistructured asynchronous (email) interviews. Interpretative description methodology was used to assess the interview transcripts, and quotations were extracted and anonymized to support each theme.

Results: 26 interviews were carried out. Participants agreed that forum posts are in the public domain and that aggregated information could be freely used by researchers. This was agreed to be a good way of ensuring that the view of people living with diabetes is being heard in research. There was no consensus on the need for permission to use individual information, such as quotations, with some people happy for this to be freely used and others feeling that permission is necessary.

Conclusions: Participants acknowledged the dichotomy of having placed information into the public domain in an unrestricted way, with some interviewees also wanting to retain control of its use. The Internet is a new research location, and rather than trying to apply traditional ethical norms to this new genre, a new modus operandi is required. The authors propose introducing new norms for presenting research carried out with online discussion boards.

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Data analysis process.
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figure2: Data analysis process.

Mentions: A qualitative approach using interpretative description [28] was employed to assess the responses to the semistructured interviews. An inductive approach was adopted, allowing the themes to emerge from the data rather than testing previously identified themes on the data. The rigor of this analysis was based on Guba and Lincoln’s principles of credibility confirmability and dependability [34,35]. This was achieved through prolonged engagement with sufficient depth of data; peer debriefing and analysis of materials; linking assertions, findings, and interpretations with the data and third party auditing of the data collection and analysis process. The process is set out in a flow chart (Figure 2) highlighting the stages in the process of analysis. CSB and OHA read each transcript several times independently and loosely attributed themes to the data with no consultation occurring between the assessors at this stage. Discussion was then undertaken to compare the themes identified and to resolve any areas of disagreement with theme allocation. Quotations were extracted to support themes, and each participant was assigned a number (eg, P04) when using the supporting quotations. Following this process and the identification of themes, their findings were sent to the other members of the research team (BT and MH) in order to verify the themes. In view of the lack of consensus on some issues among the study participants, a final check was carried out by someone not previously involved in the analysis (JHT) who reviewed the themes and conclusions to ensure consistency.


The conceptual and practical ethical dilemmas of using health discussion board posts as research data.

Bond CS, Ahmed OH, Hind M, Thomas B, Hewitt-Taylor J - J. Med. Internet Res. (2013)

Data analysis process.
© Copyright Policy - open-access
Related In: Results  -  Collection

License 1 - License 2
Show All Figures
getmorefigures.php?uid=PMC3713935&req=5

figure2: Data analysis process.
Mentions: A qualitative approach using interpretative description [28] was employed to assess the responses to the semistructured interviews. An inductive approach was adopted, allowing the themes to emerge from the data rather than testing previously identified themes on the data. The rigor of this analysis was based on Guba and Lincoln’s principles of credibility confirmability and dependability [34,35]. This was achieved through prolonged engagement with sufficient depth of data; peer debriefing and analysis of materials; linking assertions, findings, and interpretations with the data and third party auditing of the data collection and analysis process. The process is set out in a flow chart (Figure 2) highlighting the stages in the process of analysis. CSB and OHA read each transcript several times independently and loosely attributed themes to the data with no consultation occurring between the assessors at this stage. Discussion was then undertaken to compare the themes identified and to resolve any areas of disagreement with theme allocation. Quotations were extracted to support themes, and each participant was assigned a number (eg, P04) when using the supporting quotations. Following this process and the identification of themes, their findings were sent to the other members of the research team (BT and MH) in order to verify the themes. In view of the lack of consensus on some issues among the study participants, a final check was carried out by someone not previously involved in the analysis (JHT) who reviewed the themes and conclusions to ensure consistency.

Bottom Line: There was no consensus on the need for permission to use individual information, such as quotations, with some people happy for this to be freely used and others feeling that permission is necessary.The Internet is a new research location, and rather than trying to apply traditional ethical norms to this new genre, a new modus operandi is required.The authors propose introducing new norms for presenting research carried out with online discussion boards.

View Article: PubMed Central - HTML - PubMed

Affiliation: School of Health and Social Care, Bournemouth University, Bournemouth, United Kingdom. cbond@bournemouth.ac.uk

ABSTRACT

Background: Increasing numbers of people living with a long-term health condition are putting personal health information online, including on discussion boards. Many discussion boards contain material of potential use to researchers; however, it is unclear how this information can and should be used by researchers. To date there has been no evaluation of the views of those individuals sharing health information online regarding the use of their shared information for research purposes.

Objective: To explore the views of contributors to online diabetes discussion boards with regards to if (and how) they feel their contributions to boards should be used by health researchers.

Methods: A qualitative approach was employed using online semistructured asynchronous (email) interviews. Interpretative description methodology was used to assess the interview transcripts, and quotations were extracted and anonymized to support each theme.

Results: 26 interviews were carried out. Participants agreed that forum posts are in the public domain and that aggregated information could be freely used by researchers. This was agreed to be a good way of ensuring that the view of people living with diabetes is being heard in research. There was no consensus on the need for permission to use individual information, such as quotations, with some people happy for this to be freely used and others feeling that permission is necessary.

Conclusions: Participants acknowledged the dichotomy of having placed information into the public domain in an unrestricted way, with some interviewees also wanting to retain control of its use. The Internet is a new research location, and rather than trying to apply traditional ethical norms to this new genre, a new modus operandi is required. The authors propose introducing new norms for presenting research carried out with online discussion boards.

Show MeSH
Related in: MedlinePlus