Previously submitted to: JMIR Formative Research (no longer under consideration since Jan 10, 2022)
Date Submitted: Apr 28, 2021
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Introducing a communication platform for accountable and transparent data processing in medical research
ABSTRACT
Background:
Medical research for processing medical data is required to incorporate a governance system. Health data governance includes various elements. Among the values of governance, this study focuses on accountability and transparency.
Objective:
This paper proposes the system requirements for a communication platform to help medical researchers be accountable and transparent about medical data processing in medical research.
Methods:
We first examined accountability and transparency to find their shared bases and confirmed their importance by visiting medical research practices. Subsequently, we explored legal syllogism as the representative of rule compliance analysis to determine the system requirements to achieve the bases.
Results:
By examining accountability and transparency, we confirmed that these values were inherently vague but had two shared features– "organizing information" and "effective communication." Next, by analyzing the actual research process, we found that researchers needed to communicate effectively with legal and ethical experts to obtain appropriate support at the research planning phase. From these findings, the concept of a communication platform was derived. Through the analysis of the syllogism, we found three system requirements for the platform: (1) covering the entire chain of data processing activities; (2) being capable of recording relevant information for rule compliance analysis; and (3) being able to record compliance analysis results.
Conclusions:
We introduced an example of a user interface in line with the discovered system requirements and discussed how our design can facilitate patients' and society's interests by empowering researchers to be accountable and transparent for their research. To support medical researchers to be accountable and transparent for their research, we proposed system requirements for a communication platform. Clinical Trial: N/A
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Copyright
© The authors. All rights reserved. This is a privileged document currently under peer-review/community review (or an accepted/rejected manuscript). Authors have provided JMIR Publications with an exclusive license to publish this preprint on it's website for review and ahead-of-print citation purposes only. While the final peer-reviewed paper may be licensed under a cc-by license on publication, at this stage authors and publisher expressively prohibit redistribution of this draft paper other than for review purposes.