Young people’s data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom

Solveig K. Sieberts; Carly Marten; Emily Bampton; Elin A. Björling; Anne-Marie Burn; Emma Grace Carey; Sonia Carlson; Blossom Fernandes; Jasmine Kalha; Simthembile Lindani; Hedwick Masomera; Lakshmi Neelakantan; Lisa Pasquale; Swetha Ranganathan; Erin Joy Scanlan; Himani Shah; Refiloe Sibisi; Sushmita Sumant; Christine Suver; Yanga Thungana; Meghasyam Tummalacherla; Jennifer Velloza; Pamela Y. Collins; Mina Fazel; Tamsin Ford; Melvyn Freeman; Soumitra Pathare; Zukiswa Zingela; The MindKind Consortium; Megan Doerr

doi:10.1371/journal.pone.0279857

Peer Review History

Original SubmissionDecember 16, 2022
7 Feb 2023 Decision Letter - André Ramalho, Editor PONE-D-22-34513Young people’s data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United KingdomPLOS ONE Dear Dr. Doerr, 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. ============================== Dear authors, Thank you for submitting your work. Experience is highly relevant, novelty and important, but there are difficulties in finding several reviewers with the expertise to evaluate it. In order not to delay the editorial process, and since we have an external review, I will take the figure of the second reviewer. I ask you to clarify in the article the fact of selecting participants with ages in different ranges. Would that imply a bias? What did you do to mitigate this limitation? Best regards, ============================== Please submit your revised manuscript by Mar 24 2023 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. 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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, André Ramalho, 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. Thank you for stating the following in the Acknowledgments Section of your manuscript: "In addition to the authors named above, the MindKind Consortium includes Faith Oluwasemilore Adeyemi, Patricia A. Areán, Ljubomir Bradic, Tessa Concepcion, Meera Damji, Julia C. Dunbar, Gillian Finchilescu, Isabell R. Griffith Fillipo, Jay Hodgson, Minal Karani, Michael R. Kellen, Christopher G. Kemp, Lara M. Mangravite, Felicia Mata-Greve, Emily Moore, Erin Mounts, Larsson Omberg, Nichole Sams, Sotirios Short, Stockard Simon, and Chandre Van Vught. We acknowledge and thank the members of our Youth Group Advisory Panels in India, South Africa, and the UK, the International Youth Panel, the Global Youth Panel, and the Data Use Advisory Group for their contributions to this project. The MindKind Study was commissioned by the Mental Health Priority Area at Wellcome Trust. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript." We note that you have provided funding information that is not currently declared in your Funding Statement. However, funding information should not appear in the Acknowledgments section or other areas of your manuscript. We will only publish funding information present in the Funding Statement section of the online submission form. Please remove any funding-related text from the manuscript and let us know how you would like to update your Funding Statement. Currently, your Funding Statement reads as follows: "The MindKind Study was commissioned by the Mental Health Priority Area at Wellcome Trust (https://wellcome.org/) from Sage Bionetworks (LMM and MD). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript." Please include your amended statements within your cover letter; we will change the online submission form on your behalf. 3. Thank you for stating the following in the Competing Interests section: "The authors have declared that no competing interests exist except for author Tamsin Ford. Tamsin Ford declares: I have read the journal's policy and have the following competing interests: I consult to Place2Be, a third sector organization providing mental health support to children, parents and staff in Schools, and am the Vice Chair of the Association of Child and Adolescent Mental Health." Please confirm that this does not alter your adherence to all PLOS ONE policies on sharing data and materials, by including the following statement: "This does not alter our adherence to PLOS ONE policies on sharing data and materials.” (as detailed online in our guide for authors http://journals.plos.org/plosone/s/competing-interests). If there are restrictions on sharing of data and/or materials, please state these. Please note that we cannot proceed with consideration of your article until this information has been declared. Please include your updated Competing Interests statement in your cover letter; we will change the online submission form on your behalf. 4. In your Data Availability statement, you have not specified where the minimal data set underlying the results described in your manuscript can be found. PLOS defines a study's minimal data set as the underlying data used to reach the conclusions drawn in the manuscript and any additional data required to replicate the reported study findings in their entirety. All PLOS journals require that the minimal data set be made fully available. For more information about our data policy, please see http://journals.plos.org/plosone/s/data-availability. Upon re-submitting your revised manuscript, please upload your study’s minimal underlying data set as either Supporting Information files or to a stable, public repository and include the relevant URLs, DOIs, or accession numbers within your revised cover letter. For a list of acceptable repositories, please see http://journals.plos.org/plosone/s/data-availability#loc-recommended-repositories. Any potentially identifying patient information must be fully anonymized. Important: If there are ethical or legal restrictions to sharing your data publicly, please explain these restrictions in detail. Please see our guidelines for more information on what we consider unacceptable restrictions to publicly sharing data: http://journals.plos.org/plosone/s/data-availability#loc-unacceptable-data-access-restrictions. Note that it is not acceptable for the authors to be the sole named individuals responsible for ensuring data access. We will update your Data Availability statement to reflect the information you provide in your cover letter. 5. One of the noted authors is a group or consortium The MindKind Consortium. In addition to naming the author group, please list the individual authors and affiliations within this group in the acknowledgments section of your manuscript. Please also indicate clearly a lead author for this group along with a contact email address. 6. Please review your reference list to ensure that it is complete and correct. If you have cited papers that have been retracted, please include the rationale for doing so in the manuscript text, or remove these references and replace them with relevant current references. Any changes to the reference list should be mentioned in the rebuttal letter that accompanies your revised manuscript. If you need to cite a retracted article, indicate the article’s retracted status in the References list and also include a citation and full reference for the retraction notice. Additional Editor Comments: Dear authors, Thank you for submitting your work. Experience is highly relevant, novelty and important, but there are difficulties in finding several reviewers with the expertise to evaluate it. In order not to delay the editorial process, and since we have an external review, I will take the figure of the second reviewer. I ask you to clarify in the article the fact of selecting participants with ages in different ranges. Would that imply a bias? What did you do to mitigate this limitation? Best regards, [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 ******** 2. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: Yes ****** 3. 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: No ****** 4. 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 ****** 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 present the results of an important project that describes the perspective of young individuals regarding their mental health data governance. When the authors state "young participants", they include participants aged 16-24 in the UK and 18-24 in the other regions. Why didn't you selected the same age interval between countries? I do not see the benefits of including differential age groups between sites, please explain. Please explain what is a "diverse youth" based on some variables. Why the discrepancy on the % of participants allocated by social media advertisements between sites? Ellaborate the possible impacts on the results. As you state in the discussion section, Android users represent only part of the population, possible selection bias? ****** 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 ******** [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.0279857.r001
Revision 1
31 Mar 2023 Author Response We appreciate the reviewers’ supportive comments as well as the thoughtful concerns raised. We have addressed each one below. Reviewer 1 When the authors state "young participants", they include participants aged 16-24 in the UK and 18-24 in the other regions. Why didn't you select the same age interval between countries? I do not see the benefits of including differential age groups between sites, please explain. This study included participants from the age of consent (18 in India and South Africa, and 16 in the UK) to 24 years of age. We recognize that this introduced some differences across the countries examined, however we thought it important to include the youngest participants who were able to provide their own consent without the input of a parent/guardian. For the quantitative study, we did examine the effect of age as noted in the text. Age was not significant in the preferences related to ‘how researchers access the data’ nor in the analysis of participant acceptability. We did notice a modest effect (p-val =0.05) for the choice of ‘who controls access to the data’ with younger participants being more likely to choose professional review panel. For the qualitative study, we included participants of the same age ranges to best produce results that corresponded to the quantitative study. We separated groups by younger (16-20) and older (21-24) participants to minimize power dynamics between participants, which we detailed in the Materials and methods as follows: “Across all sessions, we sought stratification of younger (16-20) and older (21-24) participants…” We have added the following text to the discussion: “We chose to include participants ranging from the age of consent (i.e. those legally allowed to make decisions about study participation without the need for a parent/guardian) to the age of 24, in order to understand the choices that young people would make for themselves. This resulted in differences, by country, in the ages included (18-24 for India and South Africa; 16-24 for UK). However, we largely found no effect of age in our analysis, except for a minor increase in those choosing a professional review panel to control access to their data. In the qualitative study, we stratified groups by age in order to minimize power dynamics between participants.” Please explain what is a "diverse youth" based on some variables. Thank you for bringing this to our attention. We wrote “PYAs sought to ensure members represented diverse youth from their countries based on geographic region, race/ethnicity, gender, language, and lived experience of mental health concerns.” We recognize that this language was unclear as to how the seeking of diversity was operationalized in our Young People's Advisory Groups (YPAGs). We have modified this language as follows: “Each YPAG was composed of 12-16 young people, and PYAs sought to ensure maximal heterogeneity within the groups with respect to geographic region, race/ethnicity, gender, languages spoken, and lived experience of mental health concerns. Study teams also worked with community partner organizations to ensure the representation of YPAG members from marginalized social groups.” Why the discrepancy on the % of participants allocated by social media advertisements between sites? Elaborate the possible impacts on the results. Each site employed a variety of different approaches to recruitment, however unique attributes of each country likely affected which approaches were successful. For example, the high cost of data, load shedding, etc in South Africa likely contributed to online recruitment being less successful here. We have a forthcoming publication delving into this topic so have not discussed it in-depth in this manuscript. We have added the following note in the limitations section: “We also noted that a larger portion of participants were recruited through offline strategies.” As you state in the discussion section, Android users represent only part of the population, possible selection bias? Yes, we have noted this in the discussion “While Android phones have good market share in the UK [34], they tend to be substantially less popular among younger users [35], so quantitative results may not be generalizable to the rest of the UK population.” We have added “In contrast, Android phones are highly represented in India and South Africa [36, 37], though the Android requirement is a potential limitation here as well.” to make clear that the Android requirement affected representativeness in all three countries. Reviewer 2 I ask you to clarify in the article the fact of selecting participants with ages in different ranges. Would that imply a bias? What did you do to mitigate this limitation? This study included participants from the age of consent (18 in India and South Africa, and 16 in the UK) to 24 years of age. We recognize that this introduced some differences across the countries examined, however we thought it important to include the youngest participants who were able to provide their own consent without the input of a parent/guardian. For the quantitative study, we did examine the effect of age as noted in the text. Age was not significant in the preferences related to ‘how researchers access the data’ nor in the analysis of participant acceptability. We did notice a modest effect (p-val =0.05) for the choice of ‘who controls access to the data’ with younger participants being more likely to choose professional review panel. For the qualitative study, we included participants of the same age ranges to best produce results that corresponded to the quantitative study. We separated groups by younger (16-20) and older (21-24) participants to minimize power dynamics between participants, which we detailed in the Materials and methods as follows: “Across all sessions, we sought stratification of younger (16-20) and older (21-24) participants…” We have added the following text to the discussion: “We chose to include participants ranging from the age of consent (i.e. those legally allowed to make decisions about study participation without the need for a parent/guardian) to the age of 24, in order to understand the choices that young people would make for themselves. This resulted in differences, by country, in the ages included (18-24 for India and South Africa; 16-24 for UK). However, we largely found no effect of age in our analysis, except for a minor increase in those choosing a professional review panel to control access to their data. In the qualitative study, we stratified groups by age in order to minimize power dynamics between participants.” Attachments Attachment Submitted filename: Response to Reviewers.docx https://doi.org/10.1371/journal.pone.0279857.r002
4 Apr 2023 Decision Letter - André Ramalho, Editor Young people’s data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom PONE-D-22-34513R1 Dear Dr. Doerr, 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 for payment will follow shortly after the formal acceptance. To ensure an efficient process, please log into Editorial Manager at http://www.editorialmanager.com/pone/, click the 'Update My Information' link at the top of the page, and double check that your user information is up-to-date. If you have any billing related questions, 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, André Ramalho, PhD Academic Editor PLOS ONE https://doi.org/10.1371/journal.pone.0279857.r003
Formally Accepted
10 Apr 2023 Acceptance Letter - André Ramalho, Editor PONE-D-22-34513R1 Young people’s data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom Dear Dr. Doerr: I'm pleased to inform you that your manuscript has been deemed suitable for publication in PLOS ONE. Congratulations! Your manuscript is now with our production department. 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 plosone@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. Dr. André Ramalho Academic Editor PLOS ONE https://doi.org/10.1371/journal.pone.0279857.r004

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