Social Media as a Source of Knowledge about Gene Therapy for Spinal Muscular Atrophy

Round 1

Reviewer 1 Report

I. Introduction

Not enough background is given in the Introduction section.

 

II. Materials and  method section

There are many shortcomings in the research methodology.

1) This study seems to conduct a research for zolgensma, but the search term is nursinersen (spinraza). It is questionable whether the data collection was done properly from the first place.

2) Search social media for "SMA" OR "rdzeniowy zanik mięśni (spinal muscular 6atrophy)" AND “nusinersen” OR “spinraza” OR “gen *”. and the search database seems to have dealt with various sites. However, this study included sites such as YouTube, a video-sharing platform. If authors search for text on these sites, I think the results does not come out properly. 

3) The text is divided into article, comment, and statements. Based on the criteria suggested by the author, aren't comments too short to analyze? For instance, none of the evaluation criteria would be met if someone commented, "I am really excited that zolgensma is released." 

4) 1252 duplicate files out of the 1525 total texts were found and removed, but it appears that there are still too many. Is this accurate? For instance, i think it whoud challenging to duplicate news text.

5) Only 112 of the 273 texts included for analysis were still available, which is another issue. Why isn't more than half of texts mentioned about onasemnogen abeparvovec when the search  term is "onasemnogen abeparvovec"? 

6) I can't understand what Table 2 means either. First, while we were talking about zolgensma, all of a sudden, a table showed results about nusinersen(spinraza). Second, I can't understand what the table means. Are the table means those statements included in the text or not? I don't know why this statement was chosen, and I don't know the meaning of the statement. And this table should go into results.

Also, I think, results section 3 may be dealt with this. The purpose of the included text is too diverse. Is it a good if text satisfy all the objectives presented in Results 3?

 

III. Results

1) The contents of the inclusion data should be moved in the results.

2) Why is Figure 3 presented? I can not find where the figure 3 was presented in the text.

3) Results contain subjective estimates. For example line 147-148 "This may indicate a growing interest in SMA and awareness and treatment in the disease." This should be included in the discussion.

4) Table 4 included the results off views, reaches, followers, likes. However this is not mentioned in methods section. Also, how you calculate followers? Is it the article's followers or the news company's followers?  Because methods section are poor, it is difficult to interpret the results section also. 

 

IV. DISCUSSION section

It seems that the composition of the discussion needs to be  changed systematically. It doesn't match and support your results. Also I'm not quite sure what you want to say. The discussion is not an in-depth interpretation of your results, but rather a list of past studies on social media misinformation.

Author Response

Drogi Recenzencie. Dziękujemy za wszystkie uwagi i rady, jak sprawić, by nasza praca była lepsza i bardziej zrozumiała. Wykorzystaliśmy część Twojej uwagi w naszym badaniu i uważamy, że dzięki temu jest ono o wiele bardziej wiarygodne. Rozszerzamy wstęp, wyjaśniamy niektóre metody, porządkujemy tabele i ryciny, poprawiamy sekcję dyskusyjną, poprawiamy sekcję wyników i usuwamy z niej subiektywne oceny. Chcielibyśmy również wyjaśnić, dlaczego nie zmieniamy niektórych uwag.

1. Wstęp
   1. We wstępie rozszerzyliśmy nasze tło. Mamy nadzieję, że teraz jest bardziej rzetelny i zawiera globalne spojrzenie na sprawę.
2. Metody
   1. Tworząc pierwszą bazę danych o SMA chcieliśmy, aby była jak największa. Z tego powodu użyliśmy również określeń takich jak nusinersen czy spinraza.
   2. Thinking about well selected database we were afraid that if we search just SMA or gene therapy, we could find too many one-sentence texts. Thanks to using the AND operative we took care about longer texts in our database. Gen* means that we found all below: GENe therapy, GENetic therapy, GENe in SMA, ZolGENsma, OnasemnoGEN etc. If the source is a video platform, the video was viewed and treated as text, which was finally evaluated in DISCERN.
   3. As above.
   4. The database was created properly. So many duplicates were related to multiple sharing of a given text by one platform, while keeping the original source link and thus all statistics. We put the information about that in text now, to better understanding this case.
   5. The reason why 112 of 273 texts were included is because the first database were created as big as it could be by using more search terms like Nusinersen or spinraza, direct connected with this topic. Rest of 273 texts were about SMA and Nusinersen, and we couldn't analyze them in the contest of gene therapy.
   6. The table no. 2 (now number No.4) present the question created by authors to analyze quality about SMA in all and its meant in 2.3 Methods-Scoring System. We also moved this table into results and clarified its content.
3. Results
   1. 1. We put the table with inclusion content as a start of our results as you suggested.
   2. 2. Figure 3 is presented in texts in chapter 3.2, now we make it more transparent.
   3. 3. We deleted the subjective estimate and put it into discussion section.
   4. 4. Treść tabeli 4 (obecnie tabela 3) wspominamy w sekcji Metody. Narzędzie, z którego korzystaliśmy Newspoint sp. z oo (Polska) - jedno z wielu dostępnych na rynku narzędzi do monitorowania treści internetowych, stworzyło bazę danych z liczbami wyświetleń, obserwujących, polubień i zasięgów.
4. Dyskusja
   1. Skład dyskusji został zmieniony. Mamy nadzieję, że teraz lepiej pasuje i wspiera nasze wyniki.

Ponadto teksty przeszły intensywną rewizję angielską.

Wierzymy, że teraz nasz artykuł zmieści się w wydaniu specjalnym Healthcare

Reviewer 2 Report

Dear Authors and Editor,

I find this research very interesting and well constructed. However, the introduction and discussion are short on references. Let me explain: I miss more discussion of ideas in the discussion, countering data, offering a global and holistic view. Likewise, the introduction seems to me to be very poor. The article has potential, but it is necessary to expand these two sections because although the methodology and results are very interesting, it is necessary to contextualize the reality.

Author Response

Dear Reviewer, thank you very much for your comments and advise how to create our work better and more understandable. It was very helpful. We improved the introduction and discussion section as you suggested. We hope that now our work will present a holistic view on the problem and the background in the introduction became more adequate. Also, the text passed English proofreading to be more clear. We believe that now our article will fit in Healthcare special Issue.

Reviewer 3 Report

 

Dear Authors,

Thank you for raising one of the important concepts of ‘Sharing knowledge of Onasemnogen Abeparvovec by Social media” for SMA. 

The article is well written and structured. However, in my opinion, the paper has some notable changes regarding detailed introduction and literature review methodology. Below I have provided numerous remarks and comments on the text as it is often vague and long-winded. To some extent, also suggested to move the methods parts in to results for better understanding for the readers. Please find the comments below.

 

Comments:

1. Introduction

It is advised to include significant background information about the significance of SNS as a source for particular concepts along with illustrative references (only six references could provide much informative background on the whole concept).

 L. 57: A lot of language editing is necessary. The purpose of our work is to... Because the study is over, it is advised that authors change the sentence's past tense.

 

2. Materials and Methods

 

Since the method seems to be literature review. why the authors didn't concentrate on standardized electronic data bases:

It is recommended to move all related table (1,2) to results section.

All relevant tables (1, 2) should be moved to the results section.

Criteria for inclusion and exclusion are literally ambiguous. because a selection of the articles produced the content under the corresponding subheadings.

3. Discussion written well and conclusion mut be focused more details about your findings and future implications

4. It is advised to add the limitations at the end of the discussion part.

 

 

Author Response

Dear Reviewer, thank you for your precious remarks. As you suggested we improved the introduction and methodology sections. Moreover, we added few sentences in the discussion. The English has been refined, to make our work more understandable. Please find the answers to your comments below.

1. In the Introduction we extended our background. We hope now it is more reliable and with some global view on the case.
2. In methodology section we tried to explain in more reliable way how we collected data. As our method to collect data we used Newspoint sp. Z.o.o. This program gave us 1525 text which contained one of searched phrases: "SMA" OR "rdzeniowy zanik mięśni (spinal muscular atrophy)" AND “nusi-nersen” OR “spinraza” OR „gen*". We used those phrases to achieve as meny result as we can. Thanks to such a wide search we minimized the numer of really short texts. We wanted to write an article about gene therapy, so we choose only texts connected with it. The texts which we used had to mention about gene therapy in some way. Moreover, all the significant tables were moved to the result sections as was suggested.
3. We improved our discussion and conclusion part, by trying to focus more on our findings and to create a whole future directions.
4. We added limitations and advantages at the end of the discussion part as you suggested.

We believe that now the article has a global, more holistic view and will fit in Healthcare special Issue.

Round 2

Reviewer 1 Report

Authors' responses should be written in English.

Reviewer 2 Report

Dear Editor and Authors. 

Thank you for incorporating the improvements.