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Summary:

This paper reports the collection of primary data using semi-structured interviews and its analysis through the qualitative methodology of reflexive thematic analysis to provide an answer to the question “How do autistic people and parents who consent on behalf of their autistic children feel about their data as participants in autism research studies being ‘open data’”. As reviewers, some of us have a low level of familiarity with qualitative analysis and this method in particular. 

The reviewers largely agreed that the study addresses a valuable question. There is increasing pressure (such as from funders) to make research data available openly because of the numerous benefits of doing so; however, sometimes overlooking the risks or concerns of the patients themselves. Rules and norms limiting how open data practices are applied to sensitive data are also evolving alongside rapidly evolving technology. The paper’s discussion of risks of collective harm and concerns about open data. Those were the strengths of the study.

The research found that although members of the autism community saw the potential to benefit from open data, the majority of participants expressed a preference for access to data being restricted. However, participants felt differently about different types of data, such as biological vs. transcripts, and there were also concerns about specific use cases of data that could result in collective or individual harm. There was also some disparity among participants around the understanding of how open data was used in practice. 

List of major concerns and feedback:

One major concern was identified, which is that the limitations section should more clearly specify that results are relevant to the UK context and should also state the year(s) when the data were collected. For example, in the US, there is less data privacy regulation, and recent events make it likely that more information is available for potential re-identification of research participants. Thus, results may be closely tied to a specific research context.

We interpreted the description of methodology to indicate that only one member of the research team coded each transcript. We are more familiar with methodology where two or more members code each transcript and report both a measure of agreement and how disagreements were resolved. Depending on the conventions for this particular method of analysis, this could be a major or minor concern, and is potentially addressable.

Risks related to reidentification through a combination of datasets did not seem to be covered in the video, and did not seem to be significantly addressed in the responses or paper, especially relative to the risk of collective harm, which got more coverage. This could be interpreted as the responses being influenced by the training video.

List of minor concerns and feedback

• There are opportunities to make the abstract more effective, perhaps by adopting a structured abstract format such as  https://www.nlm.nih.gov/bsd/policy/structured_abstracts.html or, if that format isn’t used in your field, using keywords such as qualitative research and semi-structured interview prominently to aid discovery, and by being explicit with terms like design and results.

• Because the specific analysis methodology is likely to be unfamiliar to some readers, it would be good to state the six stages of reflective thematic analysis and to structure the manuscript to make the six stages visible.

• We suggest reporting the results more clearly, with an eye toward clusters of responses, implications, and application. Within the broad themes of Narratives of Research and Vulnerability and Risk in Research Participation, perhaps add subheadings to make clear the main positive and negative views that were found. 

• It would be good to post the semi-structured interview protocol in the supplemental materials. It’s a good open science practice, could help other researchers doing similar studies, and could be of more informal use to researchers trying to understand how their subjects feel about open data.

• The people with autism who were participants in the study seemed to include people who needed to be represented by their parents and people who were able to participate independently. Did the research protocol include any adaptations for people who were more in the middle, such as being able to participate in the study with accommodations, such as providing questions and/or responses in writing, extra time, etc? If so, that could be helpful to share with readers. 

• The paper could benefit from more discussion of participants’ limited or perhaps even mistaken understanding of use of data in research.

• There are some terms which would benefit from further explanation. For example what does “research experience” mean as participants of researchers or as researchers themselves? What does “postgraduate” mean? The authors could add a definition of this to clarify this, for each category (it’s not clearly defined, especially for folks outside of the UK). 

• The authors also mention “participants with prior professional experience” on page 16– did this just come up in interviews or do they actually have this data? If so, it would be good to include this in the demographic chart (this is not the same as education level)- especially as the authors then go on to say that these participants who had more research experience trusted open data more, and this surprised the research team.

• On page 15, the authors say that parents spoke of the importance of respecting their child’s rights, privacy, and ownership of their data (under the theme of research participants being vulnerable), it would be useful to include a quote to support this claim.

• The formatting of the document with linenumbers flush against the text was difficult to read.

• On Table 1, consider reporting mean age and age range in separate rows to make it more clear.

• There were some typos in the subtitles of the video that could change meaning: spaces for faces, R1 for our one.

Concluding remarks

We thank the authors of the preprint for posting their work openly for feedback. We also thank all participants of the Live Review call for their time and for engaging in the lively discussion that generated this review.

Competing interests

Vanessa Fairhurst was a facilitator of this call and one of the organizers. No other competing interests were declared by the reviewers.