Brain fog in chronic pain: Protocol for a discourse analysis of social media postings

Ronessa Dass; Tara Packham

doi:10.1371/journal.pone.0302443

Peer Review History

Original SubmissionAugust 5, 2023
3 Dec 2023 Decision Letter - Rashid Ibrahim Mehmood, Editor PONE-D-23-23957Brain fog in chronic pain: Protocol for a discourse analysis of social media postingPLOS ONE Dear Dr. Dass, Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process. One reviewer has expressed concerns about the methodology's reliance on social media and forums without scientific evidence, questioning its viability. The other reviewer recommended major revisions for the manuscript, particularly in the protocol, focusing on detailed aspects of data collection, annotation, and analysis, including transparency and rigor in qualitative research by involving multiple analysts for enhanced reliability and credibility. Please submit your revised manuscript by Jan 14 2024 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org. When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file. Please include the following items when submitting your revised manuscript: A rebuttal letter that responds to each point raised by the academic editor and reviewer(s). You should upload this letter as a separate file labeled 'Response to Reviewers'. A marked-up copy of your manuscript that highlights changes made to the original version. You should upload this as a separate file labeled 'Revised Manuscript with Track Changes'. An unmarked version of your revised paper without tracked changes. You should upload this as a separate file labeled 'Manuscript'. If you would like to make changes to your financial disclosure, please include your updated statement in your cover letter. Guidelines for resubmitting your figure files are available below the reviewer comments at the end of this letter. If applicable, we recommend that you deposit your laboratory protocols in protocols.io to enhance the reproducibility of your results. Protocols.io assigns your protocol its own identifier (DOI) so that it can be cited independently in the future. For instructions see: https://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols. Additionally, PLOS ONE offers an option for publishing peer-reviewed Lab Protocol articles, which describe protocols hosted on protocols.io. Read more information on sharing protocols at https://plos.org/protocols?utm_medium=editorial-email&utm_source=authorletters&utm_campaign=protocols. We look forward to receiving your revised manuscript. Kind regards, Rashid Mehmood, PhD Academic Editor PLOS ONE Journal Requirements: When submitting your revision, we need you to address these additional requirements. 1. Please ensure that your manuscript meets PLOS ONE's style requirements, including those for file naming. The PLOS ONE style templates can be found at https://journals.plos.org/plosone/s/file?id=wjVg/PLOSOne_formatting_sample_main_body.pdf and https://journals.plos.org/plosone/s/file?id=ba62/PLOSOne_formatting_sample_title_authors_affiliations.pdf 2. Please provide additional details regarding participant consent. In the ethics statement in the Methods and online submission information, please ensure that you have specified (1) whether consent was informed and (2) what type you obtained (for instance, written or verbal, and if verbal, how it was documented and witnessed). If your study included minors, state whether you obtained consent from parents or guardians. If the need for consent was waived by the ethics committee, please include this information. If you are reporting a retrospective study of medical records or archived samples, please ensure that you have discussed whether all data were fully anonymized before you accessed them and/or whether the IRB or ethics committee waived the requirement for informed consent. If patients provided informed written consent to have data from their medical records used in research, please include this information. 3. Please amend your manuscript to include your abstract after the title page. [Note: HTML markup is below. Please do not edit.] Reviewers' comments: Reviewer's Responses to Questions Comments to the Author 1. Does the manuscript provide a valid rationale for the proposed study, with clearly identified and justified research questions? The research question outlined is expected to address a valid academic problem or topic and contribute to the base of knowledge in the field. Reviewer #1: Yes Reviewer #2: Partly ******** 2. Is the protocol technically sound and planned in a manner that will lead to a meaningful outcome and allow testing the stated hypotheses? The manuscript should describe the methods in sufficient detail to prevent undisclosed flexibility in the experimental procedure or analysis pipeline, including sufficient outcome-neutral conditions (e.g. necessary controls, absence of floor or ceiling effects) to test the proposed hypotheses and a statistical power analysis where applicable. As there may be aspects of the methodology and analysis which can only be refined once the work is undertaken, authors should outline potential assumptions and explicitly describe what aspects of the proposed analyses, if any, are exploratory. Reviewer #1: Partly Reviewer #2: Partly ****** 3. Is the methodology feasible and described in sufficient detail to allow the work to be replicable? Descriptions of methods and materials in the protocol should be reported in sufficient detail for another researcher to reproduce all experiments and analyses. The protocol should describe the appropriate controls, sample size calculations, and replication needed to ensure that the data are robust and reproducible. Reviewer #1: No Reviewer #2: No ****** 4. Have the authors described where all data underlying the findings will be made available when the study is complete? The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception, at the time of publication. The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified. Reviewer #1: No Reviewer #2: No ****** 5. Is the manuscript presented in an intelligible fashion and written in standard English? PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here. Reviewer #1: Yes Reviewer #2: Yes ****** 6. Review Comments to the Author Please use the space provided to explain your answers to the questions above and, if applicable, provide comments about issues authors must address before this protocol can be accepted for publication. You may also include additional comments for the author, including concerns about research or publication ethics. You may also provide optional suggestions and comments to authors that they might find helpful in planning their study. (Please upload your review as an attachment if it exceeds 20,000 characters) Reviewer #1: Much of the information found on social media and forums may not be based on scientific evidence, making it difficult to differentiate between anecdotal reports and verified research findings. Therefore, I am not satisfied this is a viable methodology. Reviewer #2: This manuscript requires a major review. Please find below what needs to be included in the Protocol for it to be publishable. Data collection: You need to list • Whether you are accessing the Twitter and Facebook public stream? • How do you access Facebook data if profiles are closed? • Will go to specific brain fog sites, will you become a member of these sites? • What package you are using to access Twitter stream (.i.e. python)? • What is the anticipate data for collection period? • What are the explicit search terms are going to be used? • Data collection duration? How many days/wks/months will you be collecting data? • Will English language filters be applied? • Will you exclude retweets to maintain originality • Will keep information on the tweet/fb post data attribution (full-length tweet text, tweet ID, creation time, and Twitter user information)? Annotation: • Will you train classifiers to distinguish between personal and health-care related tweets. • Will you manually label all tweets? • Will you use the content of the tweet's full text for classification or just part of? • Will you preprocess the text of the tweets by normalizing all URLs to one consistent string, removing special characters and English part of speech, converting all of the text to lowercase, and lemmatization to remove noise? • Will you look at the top 1000 occurring terms (excluding common English stop words) and manually checked if the terms were relevant to health; wellness; diseases; side effects; conditions; body parts; and/or references to other substances against standard English, medical, and slang dictionaries? Analysis: • What tool will you use to undertake qualitative content analysis? • For transparency and rigor in qualitative research, it's conventional and widely recommended to have two or more individuals independently analyse the data. This practice serves multiple valuable purposes: • Minimizing Bias: When two or more researchers independently analyse the same qualitative data, it helps mitigate individual biases. Each analyst brings their unique perspective and experiences, and by having multiple analysts, you reduce the risk of one person's biases significantly influencing the interpretation of the data. • Enhancing Reliability: Independent analysis by multiple individuals improves the reliability of the findings. It allows for the assessment of inter-coder reliability or inter-rater reliability, which measures the degree of agreement among coders or analysts. A high level of agreement suggests greater confidence in the validity of the findings. • Quality Assurance: The collaborative approach helps in identifying and resolving discrepancies or disagreements in coding and interpretation. This iterative process can lead to more robust and well-supported findings. • Richer Insights: Different analysts may notice unique patterns, themes, or nuances within the data. Multiple perspectives can lead to a deeper and more comprehensive understanding of the qualitative material. • Enhancing Credibility: In qualitative research, demonstrating rigor and transparency is crucial for establishing credibility and trustworthiness. Engaging multiple analysts and documenting their consensus-building process can enhance the credibility of your research findings. You need to include all the above in your protocol. ****** 7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files. If you choose “no”, your identity will remain anonymous but your review may still be made public. Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy. Reviewer #1: No Reviewer #2: No ******** [NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.] While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org. Please note that Supporting Information files do not need this step. https://doi.org/10.1371/journal.pone.0302443.r001
Revision 1
13 Dec 2023 Author Response Thank you to the reviewers for their insightful feedback. We have done our best to address all comments point by point. Reviewer #1: Much of the information found on social media and forums may not be based on scientific evidence, making it difficult to differentiate between anecdotal reports and verified research findings. Therefore, I am not satisfied this is a viable methodology. Thank you for highlighting your concerns. We acknowledge the limitations of social media posts in our introduction and will be sure to reiterate this point once we present our findings. “Though social media data may be inherently biased, and at times inaccurate, the discourse often has real life implications (14,15). Persons with chronic pain may adopt the information they see online and may be influenced to alter their beliefs about their conditions (14,15).” However, our objective for this study is not to describe what has been stated in the academic literature, but rather we are interested in understanding the discourse of brain fog by persons with lived experiences. This is particularly important considering that the term brain fog was first derived through online discussions of persons with lived experiences. In our final manuscript, we will report how people describe this phenomenon. This information will be used to provide recommendations for future areas of research. Reviewer #2: This manuscript requires a major review. Please find below what needs to be included in the Protocol for it to be publishable. Data collection: You need to list • Whether you are accessing the Twitter and Facebook public stream?/How do you access Facebook data if profiles are closed/Will go to specific brain fog sites, will you become a member of these sites?/What package you are using to access Twitter stream (.i.e. python)? In accordance with published ethical guidance, we have specified this information as follows: In accordance the Internet Specific Ethical Questions Framework to protect data anonymity (22), searches will occur through a public search engine, therefore no private posts, pages, or groups will be searched. We will acknowledge this approach as a limitation in the resulting manuscript, as we may indeed miss relevant material in closed Facebook groups. • What is the anticipate data for collection period?/Data collection duration? How many days/wks/months will you be collecting data We started data collection after submitting our protocol. Thus, data collection occurred in October 2023 within the span of one week. Data was collected within one week to ensure feasibility as new posts generate daily on social media platform. We have specified this information at the bottom of the search strategy paragraph. • What are the explicit search terms are going to be used? We have specified the search terms “#brainfog chronic pain,” “brain fog chronic pain,” “#brainfog chronic pain” and “brain fog #chronicpain” • Will English language filters be applied? No language filters will be applied, we have added this detail in the search strategy. • Will you exclude retweets to maintain originality Thank you for highlighting this point, we have added it to our exclusion criteria. • Will keep information on the tweet/fb post data attribution (full-length tweet text, tweet ID, creation time, and Twitter user information)? All extracted potential identifiers will be deleted post manuscript completion, this information has been added at the end of the data extraction paragraph. Annotation: • Will you train classifiers to distinguish between personal and health-care related tweets/• Will you manually label all tweets?/ Will you use the content of the tweet's full text for classification or just part of?/Will you preprocess the text of the tweets by normalizing all URLs to one consistent string, removing special characters and English part of speech, converting all of the text to lowercase, and lemmatization to remove noise?/Will you look at the top 1000 occurring terms (excluding common English stop words) and manually checked if the terms were relevant to health; wellness; diseases; side effects; conditions; body parts; and/or references to other substances against standard English, medical, and slang dictionaries? We will not be using artificial intelligence for this study, thus no classifiers or preprocessing. All searching and extraction will occur manually. We have specified this detail throughout the protocol. Analysis: • What tool will you use to undertake qualitative content analysis? The mapping analysis will occur on excel and the concept analysis will be done using the qualitative software, Quirkos. This detail has been added in the data analysis paragraph on page 4. • For transparency and rigor in qualitative research, it's conventional and widely recommended to have two or more individuals independently analyse the data. This practice serves multiple valuable purposes: Minimizing Bias: When two or more researchers independently analyse the same qualitative data, it helps mitigate individual biases. Each analyst brings their unique perspective and experiences, and by having multiple analysts, you reduce the risk of one person's biases significantly influencing the interpretation of the data. Enhancing Reliability: Independent analysis by multiple individuals improves the reliability of the findings. It allows for the assessment of inter-coder reliability or inter-rater reliability, which measures the degree of agreement among coders or analysts. A high level of agreement suggests greater confidence in the validity of the findings. Quality Assurance: The collaborative approach helps in identifying and resolving discrepancies or disagreements in coding and interpretation. This iterative process can lead to more robust and well-supported findings. Richer Insights: Different analysts may notice unique patterns, themes, or nuances within the data. Multiple perspectives can lead to a deeper and more comprehensive understanding of the qualitative material. Enhancing Credibility: In qualitative research, demonstrating rigor and transparency is crucial for establishing credibility and trustworthiness. Engaging multiple analysts and documenting their consensus-building process can enhance the credibility of your research findings. You need to include all the above in your protocol. Thank you for highlighting this! We have stated this at the end of the data analysis paragraph: To minimize bias and improve the reliability, credibility, and quality of findings data will be independently analyzed by two researchers. Attachments Attachment Submitted filename: PONE-D-23-23957_revision1.docx https://doi.org/10.1371/journal.pone.0302443.r002
21 Feb 2024 Decision Letter - Rashid Ibrahim Mehmood, Editor PONE-D-23-23957R1Brain fog in chronic pain: Protocol for a discourse analysis of social media postingPLOS ONE Dear Dr. Dass, Thank you for submitting your manuscript to PLOS ONE. After careful consideration, we feel that it has merit but does not fully meet PLOS ONE’s publication criteria as it currently stands. Therefore, we invite you to submit a revised version of the manuscript that addresses the points raised during the review process. Please address the reviewers' concerns. Particularly, provide a more robust response to the comments by Reviewer 1 (add some text to the revised version supported by appropriate references). Consider PLOS ONE’s publication criteria in revising your manuscript. Please submit your revised manuscript by Apr 06 2024 11:59PM. If you will need more time than this to complete your revisions, please reply to this message or contact the journal office at plosone@plos.org. When you're ready to submit your revision, log on to https://www.editorialmanager.com/pone/ and select the 'Submissions Needing Revision' folder to locate your manuscript file. Please include the following items when submitting your revised manuscript: A rebuttal letter that responds to each point raised by the academic editor and reviewer(s). You should upload this letter as a separate file labeled 'Response to Reviewers'. A marked-up copy of your manuscript that highlights changes made to the original version. You should upload this as a separate file labeled 'Revised Manuscript with Track Changes'. An unmarked version of your revised paper without tracked changes. You should upload this as a separate file labeled 'Manuscript'. If you would like to make changes to your financial disclosure, please include your updated statement in your cover letter. Guidelines for resubmitting your figure files are available below the reviewer comments at the end of this letter. If applicable, we recommend that you deposit your laboratory protocols in protocols.io to enhance the reproducibility of your results. Protocols.io assigns your protocol its own identifier (DOI) so that it can be cited independently in the future. For instructions see: https://journals.plos.org/plosone/s/submission-guidelines#loc-laboratory-protocols. Additionally, PLOS ONE offers an option for publishing peer-reviewed Lab Protocol articles, which describe protocols hosted on protocols.io. Read more information on sharing protocols at https://plos.org/protocols?utm_medium=editorial-email&utm_source=authorletters&utm_campaign=protocols. We look forward to receiving your revised manuscript. Kind regards, Rashid Mehmood, PhD Academic Editor PLOS ONE [Note: HTML markup is below. Please do not edit.] Reviewers' comments: Reviewer's Responses to Questions Comments to the Author 1. Does the manuscript provide a valid rationale for the proposed study, with clearly identified and justified research questions? The research question outlined is expected to address a valid academic problem or topic and contribute to the base of knowledge in the field. Reviewer #2: Yes ******** 2. Is the protocol technically sound and planned in a manner that will lead to a meaningful outcome and allow testing the stated hypotheses? The manuscript should describe the methods in sufficient detail to prevent undisclosed flexibility in the experimental procedure or analysis pipeline, including sufficient outcome-neutral conditions (e.g. necessary controls, absence of floor or ceiling effects) to test the proposed hypotheses and a statistical power analysis where applicable. As there may be aspects of the methodology and analysis which can only be refined once the work is undertaken, authors should outline potential assumptions and explicitly describe what aspects of the proposed analyses, if any, are exploratory. Reviewer #2: Yes ****** 3. Is the methodology feasible and described in sufficient detail to allow the work to be replicable? Descriptions of methods and materials in the protocol should be reported in sufficient detail for another researcher to reproduce all experiments and analyses. The protocol should describe the appropriate controls, sample size calculations, and replication needed to ensure that the data are robust and reproducible. Reviewer #2: Yes ****** 4. Have the authors described where all data underlying the findings will be made available when the study is complete? The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception, at the time of publication. The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified. Reviewer #2: No ****** 5. Is the manuscript presented in an intelligible fashion and written in standard English? PLOS ONE does not copyedit accepted manuscripts, so the language in submitted articles must be clear, correct, and unambiguous. Any typographical or grammatical errors should be corrected at revision, so please note any specific errors here. Reviewer #2: Yes ****** 6. Review Comments to the Author Please use the space provided to explain your answers to the questions above and, if applicable, provide comments about issues authors must address before this protocol can be accepted for publication. You may also include additional comments for the author, including concerns about research or publication ethics. You may also provide optional suggestions and comments to authors that they might find helpful in planning their study. (Please upload your review as an attachment if it exceeds 20,000 characters) Reviewer #2: Thank you for addressing the comments provided in the first review, well done I have provided some additional comments in the attached pdf. Good luck with you research. ****** 7. PLOS authors have the option to publish the peer review history of their article (what does this mean?). If published, this will include your full peer review and any attached files. If you choose “no”, your identity will remain anonymous but your review may still be made public. Do you want your identity to be public for this peer review? For information about this choice, including consent withdrawal, please see our Privacy Policy. Reviewer #2: No ******** [NOTE: If reviewer comments were submitted as an attachment file, they will be attached to this email and accessible via the submission site. Please log into your account, locate the manuscript record, and check for the action link "View Attachments". If this link does not appear, there are no attachment files.] While revising your submission, please upload your figure files to the Preflight Analysis and Conversion Engine (PACE) digital diagnostic tool, https://pacev2.apexcovantage.com/. PACE helps ensure that figures meet PLOS requirements. To use PACE, you must first register as a user. Registration is free. Then, login and navigate to the UPLOAD tab, where you will find detailed instructions on how to use the tool. If you encounter any issues or have any questions when using PACE, please email PLOS at figures@plos.org. Please note that Supporting Information files do not need this step. Attachments Attachment Submitted filename: PONE-D-23-23957_R1_Review.pdf https://doi.org/10.1371/journal.pone.0302443.r003
Revision 2
23 Feb 2024 Author Response Thank you to the reviewers for taking the time to review this article and provide thoughtful feedback. For simplicity, we have responded to the comment requiring additional information. 4. Have the authors described where all data underlying the findings will be made available when the study is complete? The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception, at the time of publication. The data should be provided as part of the manuscript or its supporting information, or deposited to a public repository. For example, in addition to summary statistics, the data points behind means, medians and variance measures should be available. If there are restrictions on publicly sharing data—e.g. participant privacy or use of data from a third party—those must be specified. Reviewer #2: No Thank you for highlighting this! Since we are using sources from social media, underlying findings will not be made available to maintain the anonymity of sources (22). We have specified this at the end of the data extraction section. Thank you for your time and please feel free to let us know if you have additional questions. Attachments Attachment Submitted filename: Response to reviewers.docx https://doi.org/10.1371/journal.pone.0302443.r004
4 Apr 2024 Decision Letter - Rashid Ibrahim Mehmood, Editor Brain fog in chronic pain: Protocol for a discourse analysis of social media posting PONE-D-23-23957R2 Dear Dr. Dass, We’re pleased to inform you that your manuscript has been judged scientifically suitable for publication and will be formally accepted for publication once it meets all outstanding technical requirements. Within one week, you’ll receive an e-mail detailing the required amendments. When these have been addressed, you’ll receive a formal acceptance letter and your manuscript will be scheduled for publication. An invoice will be generated when your article is formally accepted. Please note, if your institution has a publishing partnership with PLOS and your article meets the relevant criteria, all or part of your publication costs will be covered. Please make sure your user information is up-to-date by logging into Editorial Manager at Editorial Manager® and clicking the ‘Update My Information' link at the top of the page. If you have any questions relating to publication charges, please contact our Author Billing department directly at authorbilling@plos.org. If your institution or institutions have a press office, please notify them about your upcoming paper to help maximize its impact. If they’ll be preparing press materials, please inform our press team as soon as possible -- no later than 48 hours after receiving the formal acceptance. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information, please contact onepress@plos.org. Kind regards, Rashid Mehmood, PhD Academic Editor PLOS ONE Additional Editor Comments (optional): Reviewers' comments: https://doi.org/10.1371/journal.pone.0302443.r005
Formally Accepted
26 Apr 2024 Acceptance Letter - Rashid Ibrahim Mehmood, Editor PONE-D-23-23957R2 PLOS ONE Dear Dr. Dass, I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now being handed over to our production team. At this stage, our production department will prepare your paper for publication. This includes ensuring the following: * All references, tables, and figures are properly cited * All relevant supporting information is included in the manuscript submission, * There are no issues that prevent the paper from being properly typeset If revisions are needed, the production department will contact you directly to resolve them. If no revisions are needed, you will receive an email when the publication date has been set. At this time, we do not offer pre-publication proofs to authors during production of the accepted work. Please keep in mind that we are working through a large volume of accepted articles, so please give us a few weeks to review your paper and let you know the next and final steps. Lastly, if your institution or institutions have a press office, please let them know about your upcoming paper now to help maximize its impact. If they'll be preparing press materials, please inform our press team within the next 48 hours. Your manuscript will remain under strict press embargo until 2 pm Eastern Time on the date of publication. For more information, please contact onepress@plos.org. If we can help with anything else, please email us at customercare@plos.org. Thank you for submitting your work to PLOS ONE and supporting open access. Kind regards, PLOS ONE Editorial Office Staff on behalf of Prof. Rashid Ibrahim Mehmood Academic Editor PLOS ONE https://doi.org/10.1371/journal.pone.0302443.r006

Open letter on the publication of peer review reports

PLOS recognizes the benefits of transparency in the peer review process. Therefore, we enable the publication of all of the content of peer review and author responses alongside final, published articles. Reviewers remain anonymous, unless they choose to reveal their names.

We encourage other journals to join us in this initiative. We hope that our action inspires the community, including researchers, research funders, and research institutions, to recognize the benefits of published peer review reports for all parts of the research system.

Learn more at ASAPbio .