Becoming more of an insider: A grounded theory study on patients’ experience of a person-centred e-health intervention

Emmelie Barenfeld; Lilas Ali; Sara Wallström; Andreas Fors; Inger Ekman

doi:10.1371/journal.pone.0241801

Peer Review History

Original SubmissionMay 29, 2020
28 Jul 2020 Decision Letter - Filomena Papa, Editor PONE-D-20-16256 Becoming more of an insider: A grounded theory study on patients’ experiences of a person-centred e-health intervention PLOS ONE Dear Dr. Barenfeld, 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. It is recommended to face the following issues emerged during the review process (see for details the enclosed reviewers' comments): - improuve readability correcting small errors with language and clarify the language in the title of Table 2 - provide further clarifications about the adopted sampling criteria - simplify the language in category headings and in the accompanying text - clarify whether and how the patients experienced their interactions with PCC as person-centred - specify in describing the intervention, if there was a range of conversations offered -clearify how the theoretical sampling has taken place - provide details about recruitement of participants i.e. when were the patients asked to participate, how many were asked to participate, how many agreed -better explain the context in some parts of the section "results" - write "Standards for Reporting Qualitative Research" before the abbreviation “SRQR” (Page 4) . Please submit your revised manuscript by Sep 11 2020 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'. 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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 include a copy of the interview guide used in the study, in both the original language and English, as Supporting Information, or include a citation if it has been published previously. 3. We note that you have indicated that data from this study are available upon request. PLOS only allows data to be available upon request if there are legal or ethical restrictions on sharing data publicly. For information on unacceptable data access restrictions, please see http://journals.plos.org/plosone/s/data-availability#loc-unacceptable-data-access-restrictions. In your revised cover letter, please address the following prompts: a) If there are ethical or legal restrictions on sharing a de-identified data set, please explain them in detail (e.g., data contain potentially identifying or sensitive patient information) and who has imposed them (e.g., an ethics committee). Please also provide contact information for a data access committee, ethics committee, or other institutional body to which data requests may be sent. b) If there are no restrictions, please upload the minimal anonymized data set necessary to replicate your study findings as either Supporting Information files or to a stable, public repository and provide us with the relevant URLs, DOIs, or accession numbers. Please see http://www.bmj.com/content/340/bmj.c181.long for guidelines on how to de-identify and prepare clinical data for publication. For a list of acceptable repositories, please see http://journals.plos.org/plosone/s/data-availability#loc-recommended-repositories. We will update your Data Availability statement on your behalf to reflect the information you provide. [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: Yes ******** 2. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: N/A Reviewer #2: N/A ****** 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 Reviewer #2: 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 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: This is a well written and important article which aims to explore the experiences of a person-centred e-health intervention in patients diagnosed with chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF). Before considering publication, I have some questions which need to be clarified. Please see attachment. Reviewer #2: This paper considers a novel intervention that seeks to support two important aspects of health service delivery:person-centred care and digitalisation. Specifically it considers the patient experience of participation in the intervention, an approach that is increasingly understood as a valuable way of investigating whether and how a new intervention works to support relevant outcomes. Overall this study provides a good description of the intervention and the context for intervention delivery. In addition, the study is methodologically sound and the methods are well described. The study also highlights some interesting findings (e.g. at what points the patients find the intervention to be useful). Below are a few suggestions for developing the paper further: 1. There are a number of small errors with language which compromise readability. 2. The paper provides a detailed list of participant characteristics /initial sampling criteria (Table 2). Again, the language in the title of the table is unclear. In addition, I think there needs to be further clarification as to which characteristics informed the sampling and why they were chosen. 3. The authors’ explanation of the core category and Fig 1 both provided useful ways of understanding the focus of the analysis. In addition, the study findings clearly lifted the data from a descriptive to theoretical perspective. However when reading the category headings (including the core category) and the accompanying text I often lost sense of how each category fitted into the bigger picture. I wonder if simplifying some of the headings and language may help make their relevance more accessible/meaningful to the reader? 4. I was really pleased to see the authors clearly define what made the intervention person-centred. However whilst the results emphasised that patients experienced the intervention as one that enhanced their ability to access healthcare professionals there seemed to be less focus on the patient experience of patient-centredness. I would have liked to come away with a clearer understanding of whether and how the patients experienced their interactions with HCPs as person-centred. ****** 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: 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: Plos One 2020.docx https://doi.org/10.1371/journal.pone.0241801.r001
Revision 1
5 Oct 2020 Author Response Thank you for the opportunity to revise our manuscript entitled Becoming more of an insider: A grounded theory study on patients’ experience of a person-centred e-health intervention. The comments from you and the reviewers have been very helpful when revising the manuscript. We would like to thank the reviewers for valuable and constructive comments. Your feedback and questions have helped to improve our revised version of the manuscript. Responses to the issues raised and our subsequent revisions are addressed below. Editor comments Improve readability correcting small errors with language and clarify the language in the title of Table 2 On request the manuscript has been on a new round of language editing to improve readability, and these changes have been made accordingly throughout the document. The editing was performed by Edanz Group (https://en-author-services.edanzgroup.com/ac). We have edited the language in the title of table 2. -provide further clarifications about the adopted sampling criteria We have provided further clarifications about the adopted sampling criteria and updated the text (page 6, line 124-130). -simplify the language in category headings and in the accompanying text We have simplified the language in the accompanying text in the results section (page 9-16). We have also shortened the following category headings to improve readability; Being welcomed by the side door when lacking front door keys to protect health Keeping a share track towards health Having varying Access to supportive connections. We have simplified the language in the accompanying text in the results section (page 9-16). We have also shortened the following category headings to improve readability; Being welcomed by the side door when lacking front door keys to protect health Keeping a share track towards health Having varying Access to supportive connections. -clarify whether and how the patients experienced their interactions with PCC as person-centred In this project we have not been able to study how the patients experienced their interactions with HCPs as person-centred specifically as our aim was to explore experiences of a person-centred intervention as a whole. However, we have clarified and extended the discussions of what can be interpreted as person-centred interactions from a patient perspective in the discussion (see line 347-348, line 356, 372-374, 395-399 and 422-426). -provide details about recruitement of participants i.e. when were the patients asked to participate, how many were asked to participate, how many agreed We have clarified when the patients were asked to participate, the number of invited participants and that all patients who were asked to participate agreed participation. (page 6, line 124-130) -better explain the context in some parts of the section "results" We have added information to provide context to the quotes as requested by reviewer 1. (page 10, line 205-207, page 11 line 220-221, page 14 line 285) write "Standards for Reporting Qualitative Research" before the abbreviation “SRQR” (Page 4) . We have added Standards for Reporting Qualitative Research (page 4, line 96) - If you would like to make changes to your financial disclosure, please include your updated statement in your cover letter. We have addressed an update of one additional source for funding in the cover letter. Please ensure that your manuscript meets PLOS ONE's style requirements, including those for file naming. We ensure that our manuscript meets PLOS ONE's style requirements. Please include a copy of the interview guide used in the study, in both the original language and English, as Supporting Information, or include a citation if it has been published previously. A copy of the interview guide in Swedish and English has been included as supporting information and referred to in the document. (Page 7 and 25) In your revised cover letter, please address the following prompts: a) If there are ethical or legal restrictions on sharing a de-identified data set, please explain them in detail (e.g., data contain potentially identifying or sensitive patient information) and who has imposed them (e.g., an ethics committee). Please also provide contact information for a data access committee, ethics committee, or other institutional body to which data requests may be sent We have addressed point a) in data sharing statements in the cover letter. Reviewer 1 This is a well written and important article which aims to explore the experiences of a person-centred e-health intervention in patients diagnosed with chronic obstructive pulmonary disease (COPD) or chronic heart failure (CHF). Thank you The number of phone calls was “determined based on an agreement between the patient and the health professionals”. Was there, however, a range of conversations offered? We have clarified that one person-centered phone-call was offered as a minimum, and that there was no specified upper limit (page 5, line 103 and 106). We have also inserted a reference to our study-protocol which provides further details on the conversations in the intervention (page 5, line 112). The table 1 is very informative concerning the platform and its use and accesses Thank you It is not quite clear how the theoretical sampling which is considered a major part of grounded theory has taken place. In the abstract you write that twelve patients were “purposefully sampled in accordance with the initial sampling criteria”. I read “the initial sampling criteria” as the sampling criteria used in the PROTECT study which is presented as an RCT study. Thus, patients were sampled among patients in the intervention group. Yet, sampling could still be made theoretical where constant comparison of the initial findings from the first sampled patients could inform the further sampling. I wonder whether this has taken place. On the other hand, at page 8 you write that “data collection and analysis were done concurrently”. Please clarify if theoretical sampling only has been done by as mentioned at page 7 “developing the interview guide in line with theoretical sampling. Thank you for a valuable comment. We have clarified that the initial sampling criteria was set for this study (page 6) and that theoretical sampling was performed by developing the interview guide (page 7, line 142-144). Due to the limited sample it was not possible to direct the sampling to specific individuals which has been added as a limitation in the method discussion (page 21, line 463-465). Moreover, when were the patients asked to participate? How many were asked and did all agree? We have clarified when the patients were asked to participate, the number of invited particpants and that all participants agreed. (page 6, line 124-130) The grounded theory “Being welcomed through the side door when lacking the front door keys to protect health” is clearly developed and based on data in the form of citations. Sometimes the context needs to be better explained. We have provided further details to provide contextual understanding (page 10, line 205-207, page 11 line 220-221, page 14 line 285) For instance, the first quote at page 10, gained some hope that this [what does “this” refer to?] Please elaborate on the context or explain in the [ ]. We have elaborated on the context in the [ ], to clarify that this refers to health decline. (page 10, line 211) The second quote at page 10. What does “ball blank” mean in the sentence “why people have a ball blank to bounce ideas off”? We have replaced the word ball-blank with sounding-board. (page 11, line 224) Overall the theory provides a deeper and meaningful understanding of the advantages experienced by patients having a remote intervention which is person-centered and at the same time e-based. Especially the flexibility in patients’ ability to choose when to be active and when NOT to be active in the intervention was very convincing. Thank you The figure gathers the theory well and is well placed at page 9. Thank you A well written discussion is provided which both discuss importance of the findings and acknowledges study limitations and how they were addressed. The implications of how the study can inform evaluation of the intervention in the overall study is also explained. Literature in the field is included satisfactorily. Thank you. Page 4 Standards for Reporting Qualitative Research should be written before the abbreviation “SRQR”. We have added Standards for Reporting Qualitative Research (page 4, line 96) Reviewer 2 This paper considers a novel intervention that seeks to support two important aspects of health service delivery:person-centred care and digitalisation. Specifically it considers the patient experience of participation in the intervention, an approach that is increasingly understood as a valuable way of investigating whether and how a new intervention works to support relevant outcomes. Overall this study provides a good description of the intervention and the context for intervention delivery. In addition, the study is methodologically sound and the methods are well described. The study also highlights some interesting findings (e.g. at what points the patients find the intervention to be useful). Thank you. 1. There are a number of small errors with language which compromise readability. To improve the readability in line with comment 1-3, the manuscript has been language edited by Edanz Group (https://en-author-services.edanzgroup.com/ac). 2. The paper provides a detailed list of participant characteristics /initial sampling criteria (Table 2). Again, the language in the title of the table is unclear. In addition, I think there needs to be further clarification as to which characteristics informed the sampling and why they were chosen. We have edited the language in the table heading (page 7). Thanks to your comments we noticed that some of our intitial sampling criteria was not mention in the text and thus differed from the content of table 2. We have elaborated our text and clarified our intitial sampling criteria. (page 6, line 126-127). 3. The authors’ explanation of the core category and Fig 1 both provided useful ways of understanding the focus of the analysis. In addition, the study findings clearly lifted the data from a descriptive to theoretical perspective. However when reading the category headings (including the core category) and the accompanying text I often lost sense of how each category fitted into the bigger picture. I wonder if simplifying some of the headings and language may help make their relevance more accessible/meaningful to the reader? Thank you for your positive comment and constructive feedback of how our findings could be presented to be more accessible to readers. Your comment made us aware that the whole picture of how the categories fit together needs to be clarified. We have rewritten the first paragraph in the results section to clarify this (page 9). We have also simplified the language in the text in the results-sections. In addition, we have shortened the name of the category headings when possible without loosing or changing the essence of data. (page 9-15) 4. I was really pleased to see the authors clearly define what made the intervention person-centred. However whilst the results emphasised that patients experienced the intervention as one that enhanced their ability to access healthcare professionals there seemed to be less focus on the patient experience of patient-centredness. I would have liked to come away with a clearer understanding of whether and how the patients experienced their interactions with HCPs as person-centred. This is an interesting comment, and we agree that this is an important topic to study further. In this project we have not been able to study how the patients experienced their interactions with HCPs as person-centred specifically as our aim was to explore experiences of a person-centred intervention as a whole. We have added clarifications and deepened the results discussion of what we interprete as person-centred interactions (see line 347-348; 356; 371-374; 395-399 and 422-426). Attachments Attachment Submitted filename: Responses to Reviewers.docx https://doi.org/10.1371/journal.pone.0241801.r002
21 Oct 2020 Decision Letter - Filomena Papa, Editor Becoming more of an insider: A grounded theory study on patients’ experience of a person-centred e-health intervention PONE-D-20-16256R1 Dear Dr. Barenfeld, 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, Filomena Papa 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 Reviewer #2: 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 Reviewer #2: Yes ****** 3. Has the statistical analysis been performed appropriately and rigorously? Reviewer #1: N/A Reviewer #2: 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: No Reviewer #2: 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 Reviewer #2: 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: As mentioned, I perceive the changes made by the authors meet the comments made in a satistactory way. Reviewer #2: I am happy with the revisions made by the authors to the original manuscript, and with the standard of English. ****** 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 https://doi.org/10.1371/journal.pone.0241801.r003
Formally Accepted
10 Nov 2020 Acceptance Letter - Filomena Papa, Editor PONE-D-20-16256R1 Becoming more of an insider: A grounded theory study on patients’ experience of a person-centred e-health intervention Dear Dr. Barenfeld: 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 Dr. Filomena Papa Academic Editor PLOS ONE https://doi.org/10.1371/journal.pone.0241801.r004

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