Can I have your data? Recommendations for sharing neuroimaging data upon a direct personal request

2223 

Abstract Submission 

Anita Jwa¹, Martin Nørgaard^2,3, Russell Poldrack¹

¹Department of Psychology, Stanford University, Stanford, CA, ²Department of Computer Science, University of Copenhagen, Copenhagen, Denmark, ³Molecular Imaging Branch, National Institute of Mental Health, National Institutes of Health, Bethesda, MD

Anita Jwa  
Department of Psychology, Stanford University
Stanford, CA

Martin Nørgaard, PhD  
Department of Computer Science, University of Copenhagen|Molecular Imaging Branch, National Institute of Mental Health, National Institutes of Health
Copenhagen, Denmark|Bethesda, MD

Russell Poldrack  
Department of Psychology, Stanford University
Stanford, CA

Sharing neuroimaging data through a direct request can be challenging both for researchers who request the data and those who agree to share their data. Unlike sharing through repositories that have standardized protocols and data sharing/use agreements, each party often needs to negotiate the terms of sharing and use of data case by case against the backdrop of complex ethical and regulatory requirements, not to mention the technical issues regarding data transfer and management. This study aims to help researchers navigate these challenges by examining what to consider during the process of data sharing and by offering recommendations and practical tips from a case study.

We first divided the process of sharing data upon a direct personal request into five stages: requesting data, negotiating terms for sharing and use of data, preparing and transferring data, managing and analyzing data, and sharing the outcome of secondary analysis of data. For each stage, we identified factors to consider through a review of 1) relevant literature [1, 2]; 2) ethical principles and guidelines for human subjects research, such as the Belmont Report in the US [3] ; 3) institutions' and funding agencies' policies, such as NIH's new data management and sharing policy [4]; and 4) applicable regulations including HIPAA and Common Rule in the US [5, 6] and GDPR in the EU [7]. Then we offer lessons learned from one of the authors' recent project on shared neuroimaging data as a case study [8]. In this case study, a total of 782 subjects' PET/MRI data are collected from 7 sites through direct personal requests, spanning the countries USA, Canada, UK, Denmark, Germany, and Austria.

Table 1 shows the preliminary results of the review of the literature and ethical/regulatory analysis on the factors to contemplate at each of the five stages of data sharing through a direct request. The main takeaways from the case study are: 1) start contacting the research team that owns data ahead of time, 2) offer co-authorship on work coming out of the sharing, 3) consider proposing multiple projects on shared data to make your collaborators more invested in efforts, 4) make sure to address the redistribution of secondary and derived data when negotiating terms of data sharing, 5) have a good local contact who will be actually involved with preparing and transferring data, 6) offer your help facilitate the preparation and sharing of data and be patient, 7) keep your collaborators updated with your progress and send them intermediate results, and 8) make sure to have legal support from both the receiving site and transferring site. On average, it took 7.8 months (range 2-12 months) per site to share the data (Table 2), and for several sites, additional requests were required in order to fix inconsistencies and/or errors in the data found during processing (average of 7 requests across 4 sites), extending the sharing time up to 24 months in some cases.

In this study, we proposed best practices for sharing data upon direct personal request by summarizing crucial factors to consider at each stage of the data sharing through a review of relevant literature and ethical, policy, and regulatory requirements. In addition, we provided practical tips from a case study on how to facilitate this process while minimizing friction and frustrations. Our case study also showed that researchers should on average expect to spend 8 months on data sharing efforts by direct personal requests, which could be extended up to 24 months due to additional requests. The current state of direct personal requests to share data is far from ideal and standardized and will be particularly risky for early career scientists, often working on projects with a 2-3 year time frame.

Databasing and Data Sharing ¹

Informatics Other ²

Open Data

Other - data sharing; data use agreement; open science