“I don’t see a reason why we should be hidden from view”: Views of a convenience sample of people living with HIV on sharing HIV status data in routinely collected health and care databases in England

Elizabeth Ford; Katie Goddard; Michael Smith; Jaime Vera

doi:10.1371/journal.pone.0316848

Peer Review History

Original SubmissionFebruary 19, 2024
6 May 2024 Decision Letter - Craig Donnachie, Editor PONE-D-24-06042“I don’t see a reason why we should be hidden from view”: Views of people living with HIV on sharing HIV status data in routinely collected health and care databases in EnglandPLOS ONE Dear Dr. Ford, Thank you for submitting your manuscript to PLOS ONE. This is an interesting article that makes a novel contribution to the field. 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 submit your revised manuscript by Jun 20 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. 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Please take note with regards to R2 points, especially with regards to the sampling strategy employed and the potential wider ramifications. Greater clarity if needed with regards to the analytical approach employed. Further attention is needed with regards to the presentation of the analysis specifically the narrative pertaining to the data (see R1 and R2 points). [Note: HTML markup is below. Please do not edit.] Reviewers' comments: Reviewer's Responses to Questions Comments to the Author 1. Is the manuscript technically sound, and do the data support the conclusions? The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented. Reviewer #1: Yes Reviewer #2: Partly ******** 2. Has the statistical analysis been performed appropriately and rigorously? 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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 ****** 5. Review Comments to the Author Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters) Reviewer #1: The authors have presented a novel and interesting article, which at the moment is in a very topical area. The study presents original and novel research, with the rationale for the study clearly presented. The study gives a well-rounded introduction which introduces the topic and gap in the knowledge well. The approach to the focus groups is interesting and seems to have worked well in encouraging discussion amongst participants. More information could have been given on the presentation contents (ie were images included or text only?), however this is a minor issue and doesn’t impact the overall article. The findings are consistent with other studies in this area, particularly in relation to the fear of stigma, reluctance to share data and the mistrust of the UK health system. The thematic analysis has been systematically conducted with detailed themes, backed up thoroughly by the data. The ethical considerations have been outlined at every point and the ethical consideration has been carried through to the availability of data for the journal also. The authors have clearly outlined the reasons for limited access to the data, based on meeting the criteria for accessing sensitive data. This is commendable, particularly in light of the topic and findings of the study. Overall, the authors have presented a well-written and interesting article which deserves publication! Reviewer #2: Major: The paper is interesting but it should be much clearer that this is convenience sample that is recruited via HIV charities and not representative of the vast majority of PLHIV. Any conclusions should be measured and relate to the specificity of this sample. The partipcants are likely to be health literate, data literate and engaged with their identities in ways others will not be. These issues should be clear from the title, abstract and limitations sections. Major: more detail is needed about the type of thematic analysis used. Which version of Braun and Clerks approach was employed. Reflexive, latent, semantic, deductive etc. Can the authors clarify how what they present is thematic analysis and not content analysis? The themes look very closely related to the deliberate topics raised etc. Maybe in Table 3 you could visualise anything that was generated from the participants rather than your schedule? Major: the presentation of analysis is not pitched well. There is far too much data and not enough narrative about the analysis (this makes it look under-analysed and quite like content analysis with an excess of quotes). I would recommend that the results are re-written with a strong authorial voice about the findings of the analysis illustrated by selected illustrative extracts than the large volume of largely descriptive and slightly repetitive data extracts presented now. I think the reader wants an account of analysis not the presentation of excess data. As a rule any duplication (across extracts) or between authors account and the data presented should be removed. I feel the discussion should also indicate the need to further explore the issues within representative samples of PLHIV in the UK, and the need to explore the potential of mixed methods etc. It would be a great opportunity to discuss who does get to speak for PLHIV in the UK. I am also interested in the authors thoughts about the veracity of their sample. I am aware that for online research there has been an increase in organised engagment with UK research using VPNs to appear within the UK but participation can be fake. Were they convinced of the authenticity of their sample (sorry if this is a weird thing to ask) Minor: is the study in UK, England or Scotland? Please fid a consistent approach. ****** 6. 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: Yes: Paul Flowers ******** [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.0316848.r001
Revision 1
24 Sep 2024 Author Response Editor Please take note with regards to R2 points, especially with regards to - the sampling strategy employed and the potential wider ramifications. - Greater clarity if needed with regards to the analytical approach employed. - Further attention is needed with regards to the presentation of the analysis specifically the narrative pertaining to the data (see R1 and R2 points). >>Many thanks for your careful consideration of our paper. We have added further comments on the sample in the discussion section (p34-35). We have thoroughly re-written the presentation of the findings according to the reviewers’ points and feel the results section is much improved (p10-30). In the methods we have also explained further about the qualitative analysis approach (p7). Reviewer 1 The authors have presented a novel and interesting article, which at the moment is in a very topical area. The study presents original and novel research, with the rationale for the study clearly presented. The study gives a well-rounded introduction which introduces the topic and gap in the knowledge well. The approach to the focus groups is interesting and seems to have worked well in encouraging discussion amongst participants. >>Thank you – no changes made. More information could have been given on the presentation contents (ie were images included or text only?), however this is a minor issue and doesn’t impact the overall article. >>We have supplied a sample of slide screen shots as supplementary materials. The findings are consistent with other studies in this area, particularly in relation to the fear of stigma, reluctance to share data and the mistrust of the UK health system. The thematic analysis has been systematically conducted with detailed themes, backed up thoroughly by the data. The ethical considerations have been outlined at every point and the ethical consideration has been carried through to the availability of data for the journal also. The authors have clearly outlined the reasons for limited access to the data, based on meeting the criteria for accessing sensitive data. This is commendable, particularly in light of the topic and findings of the study. Overall, the authors have presented a well-written and interesting article which deserves publication! >>Thank you – no changes made. Reviewer 2 The paper is interesting but it should be much clearer that this is convenience sample that is recruited via HIV charities and not representative of the vast majority of PLHIV. Any conclusions should be measured and relate to the specificity of this sample. >>The words “convenience sample” have been added in Title (page 1), Abstract (page2) and Methods (page 5). The partipocants are likely to be health literate, data literate and engaged with their identities in ways others will not be. These issues should be clear from the title, abstract and limitations sections. >>We have added this caveat to the discussion section (page 34-35) More detail is needed about the type of thematic analysis used. Which version of Braun and Clerks approach was employed. Reflexive, latent, semantic, deductive etc. Can the authors clarify how what they present is thematic analysis and not content analysis? The themes look very closely related to the deliberate topics raised etc. Maybe in Table 3 you could visualise anything that was generated from the participants rather than your schedule? >>We thank the reviewer for their constructive review which helped us reconsider our analysis completely. We agree it was previously “undercooked”. We spent more time reflecting on the data, revisiting the codes and the themes and adding more interpretation and layers of meaning. We have added information about the further analytic process as well as some self-reflection on the analysis it produced in the methods section (p7). We have produced a figure which depicts the new theme structure rather than the previous table which looked like a list (p10). The presentation of analysis is not pitched well. There is far too much data and not enough narrative about the analysis (this makes it look under-analysed and quite like content analysis with an excess of quotes). I would recommend that the results are re-written with a strong authorial voice about the findings of the analysis illustrated by selected illustrative extracts than the large volume of largely descriptive and slightly repetitive data extracts presented now. I think the reader wants an account of analysis not the presentation of excess data. >>We have spent a good amount of time adding an extra layer of interpretative reflection and reformation of themes. We have looked for coherent and meaningful phenomena underpinning the views expressed in the groups and feel this new write up reflects the voice and experiences of the participant group in a deeper way. See the whole results section (p10-30) As a rule any duplication (across extracts) or between authors account and the data presented should be removed. >>We have removed various quotes where the same point was being made multiple times. I feel the discussion should also indicate the need to further explore the issues within representative samples of PLHIV in the UK, and the need to explore the potential of mixed methods etc. It would be a great opportunity to discuss who does get to speak for PLHIV in the UK. >>We have added to the discussion section on limitations and suggested some further research approaches which could be used to extend or confirm our findings. (P34-35) I am also interested in the authors thoughts about the veracity of their sample. I am aware that for online research there has been an increase in organised engagment with UK research using VPNs to appear within the UK but participation can be fake. Were they convinced of the authenticity of their sample (sorry if this is a weird thing to ask) >>We’ve added a few sentences on how online samples can be made up of participants who are not actually eligible (p34-35). Is the study in UK, England or Scotland? Please fid a consistent approach. >>We’ve highlighted the limitation that while we aimed for an English sample, one of our participants was resident in Scotland. Their data was not removed. (p34-35) https://doi.org/10.1371/journal.pone.0316848.r002
17 Dec 2024 Decision Letter - Sebastian Suarez Fuller, Editor “I don’t see a reason why we should be hidden from view”: Views of a convenience sample of people living with HIV on sharing HIV status data in routinely collected health and care databases in England PONE-D-24-06042R1 Dear Dr. Ford, 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, Sebastian Suarez Fuller, PhD Academic Editor PLOS ONE Additional Editor Comments (optional): Reviewers' comments: Reviewer's Responses to Questions Comments to the Author 1. If the authors have adequately addressed your comments raised in a previous round of review and you feel that this manuscript is now acceptable for publication, you may indicate that here to bypass the “Comments to the Author” section, enter your conflict of interest statement in the “Confidential to Editor” section, and submit your "Accept" recommendation. Reviewer #1: All comments have been addressed ******** 2. Is the manuscript technically sound, and do the data support the conclusions? The manuscript must describe a technically sound piece of scientific research with data that supports the conclusions. Experiments must have been conducted rigorously, with appropriate controls, replication, and sample sizes. The conclusions must be drawn appropriately based on the data presented. Reviewer #1: Yes ****** 3. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: N/A ****** 4. Have the authors made all data underlying the findings in their manuscript fully available? The PLOS Data policy requires authors to make all data underlying the findings described in their manuscript fully available without restriction, with rare exception (please refer to the Data Availability Statement in the manuscript PDF file). 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: Yes ****** 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 ****** 6. Review Comments to the Author Please use the space provided to explain your answers to the questions above. You may also include additional comments for the author, including concerns about dual publication, research ethics, or publication ethics. (Please upload your review as an attachment if it exceeds 20,000 characters) Reviewer #1: (No Response) ****** 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 ******** https://doi.org/10.1371/journal.pone.0316848.r003
Formally Accepted
14 Jan 2025 Acceptance Letter - Sebastian Suarez Fuller, Editor PONE-D-24-06042R1 PLOS ONE Dear Dr. Ford, 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 Dr. Sebastian Suarez Fuller Academic Editor PLOS ONE https://doi.org/10.1371/journal.pone.0316848.r004

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