Ten principles for data sharing and commercialization | Journal of the American Medical Informatics Association | Oxford Academic

Abstract:  Digital medical records have enabled us to employ clinical data in many new and innovative ways. However, these advances have brought with them a complex set of demands for healthcare institutions regarding data sharing with topics such as data ownership, the loss of privacy, and the protection of the intellectual property. The lack of clear guidance from government entities often creates conflicting messages about data policy, leaving institutions to develop guidelines themselves. Through discussions with multiple stakeholders at various institutions, we have generated a set of guidelines with 10 key principles to guide the responsible and appropriate use and sharing of clinical data for the purposes of care and discovery. Industry, universities, and healthcare institutions can build upon these guidelines toward creating a responsible, ethical, and practical response to data sharing.

 

DECLARATION TO IMPROVE BIOMEDICAL & HEALTH RESEARCH

“We are an international group of researchers and patients who believe that:

it is ethically untenable to remain complicit in the crises that undermine science,

there are simple measures which can improve the quality and openness, and

the public and patients have a right to full access of the research they fund….”

Living Our Values and Principles: Exploring Assessment Strategies for the Scholarly Communication Field | Educopia Institute

“Through the Next Generation Library Publishing project (2019-2022), Educopia Institute, California Digital Library, and Stratos, in close collaboration with COAR, LYRASIS, and Longleaf Services, seek to improve the publishing pathways and choices available to authors, editors, and readers through strengthening, integrating, and scaling up scholarly publishing infrastructures to support library publishers. In addition to building publishing tools and workflows, our team is exploring how to create community hosting models that align explicitly and demonstratively with academic values. 

Living Our Values and Principles: Exploring Assessment Strategies for the Scholarly Communication Field explores the relationship between today’s varied scholarly publishing service providers and the academic values that we believe should guide their work. We begin with a brief definition of the academic mission and then briefly probe how profit motivations have come to dominate the current scholarly publishing marketplace. We consider and analyze how academic players from a range of stakeholder backgrounds have produced a broad range of “values and principles” statements, documents, and manifestos in hopes of recalibrating the scholarly publishing landscape. We contextualize this work within the broader landscape of assessment against values and principles.

Based on our findings, we recommend that academic stakeholders more concretely define their values and principles in terms of measurable actions, so these statements can be readily assessed and audited. We propose a methodology for auditing publishing service providers to ensure adherence to agreed-upon academic values and principles, with the dual goals of helping to guide values-informed decision making by academic stakeholders and encouraging values alignment efforts by infrastructure providers. We also explore ways to structure this assessment framework both to avoid barriers to entry and to discourage the kinds of “gaming the system” activities that so often accompany audits and ranking mechanisms. We close by pointing to work we have recently undertaken: the development of the Values and Principles Framework and Assessment Checklist, which were issued for public comment in July-August, 2020 on CommonPlace (hosted by the Knowledge Futures Group).  …”

FAIR metrics and certification, rewards and recognition, skills and training: FAIRsFAIR contribution to the EOSC Strategic Research and Innovation Agenda | FAIRsFAIR

“FAIRsFAIR is a key contributor to the ongoing development of global standards for FAIR data and repository certification and to the policies and practices that will turn the EOSC programme into a functioning infrastructure. The project strongly endorses all of the guiding principles already identified as relevant to implementing the EOSC vision, with a special emphasis on the importance of FAIR-by-design tools. The guiding principles are a multi-stakeholder approach; data as open as possible and as closed as necessary; implementation of a Web of FAIR data and related services for science; federation of existing research infrastructures; and the need for machine-run algorithms transparent to researchers)….”

OCLC-LIBER Open Science Discussion on the FAIR Principles – Hanging Together

“What is the ideal future vision of an open science ecosystem supporting FAIR data? What are the challenges in getting there? These were the topics of the second installment of the OCLC/LIBER discussion series on open science, which brought together an international group of participants with a shared interest in the FAIR principles. The discussion series, which runs from September 24 through November 5, illuminates key topics related to the LIBER Open Science Roadmap. Both the discussion series and the Roadmap have the mutual goal of informing research libraries as they envision their roles in an open science landscape.

The first discussion in the series addressed the topic of scholarly publishing; a summary of the discussion highlights can be found here. In the second discussion, the focus was FAIR research data. FAIR is a set of broadly articulated principles describing the foundations of “good data management”, aimed at those who produce, publish, and/or steward research data sets, and serving as a set of guideposts for leveraging the full value of research data in support of scholarly inquiry. FAIR research data – that is, data that is findable, accessible, interoperable, and reusable – is seen as an important component of a broader open science ecosystem….”

COAR Next Generation Repositories: Vision and Objectives

“Vision

To position repositories as the foundation for a distributed, globally networked infrastructure for scholarly communication, on top of which layers of value added services will be deployed, thereby transforming the system, making it more research-centric, open to and supportive of innovation, while also collectively managed by the scholarly community.

Technical Vision

Our vision rests on making the resource, rather than the repository, the focus of services and infrastructure. Rather than relying on imprecise descriptive metadata to identify entities and the relationships between them, our vision relies on the idea inherent in the Web Architecture, where entities (known as “resources”) are accessible and identified unambiguously by URLs. In this architecture, it is the references which are copied between systems, rather than (as at present) the metadata records. Furthermore we encourage repository developers to automatize the metadata extraction from the actual resources as much as possible to simplify and lower the barrier to the deposit process.

Objectives

To achieve a level of cross-repository interoperability by exposing uniform behaviours across repositories that leverage web-friendly technologies and architectures, and by integrating with existing global scholarly infrastructures specifically those aimed at identification of e.g. contributions, research data, contributors, institutions, funders, projects.
To encourage the emergence of value added services that use these uniform behaviours to support discovery, access, annotation, real-time curation, sharing, quality assessment, content transfer, analytics, provenance tracing, etc.
To help transform the scholarly communication system by emphasizing the benefits of collective, open and distributed management, open content, uniform behaviours, real-time dissemination, and collective innovation….”

Best Practices in Research Metrics: A Conversation with Dr. Diana Hicks Registration, Tue, Oct 13, 2020 at 4:00 PM | Eventbrite

“Join Professor Diana Hicks of the Georgia Tech School of Public Policy for a conversation about the Leiden Manifesto for Research Metrics. There will be a high level overview of the 10 principles to guide research evaluation followed by a participant driven Q&A with Professor Hicks.”

Next Generation Library Publishing Open Forum Tickets, Mon, Oct 5, 2020 at 1:00 PM | Eventbrite

“Please join Dr. Katherine Skinner and Sarah Lippincott and the Next Generation Library Publishing team for an hour-long open forum on their recent work to develop values and principles-based assessment tools to incentivize stronger alignment between publishing tools, services, and platforms and the scholarly communities and publics they ultimately serve.

During this open forum, we will be seeking input and feedback from attendees regarding the Values and Principles Framework and its affiliated Assessment Checklist, which we have issued for public comment from August-September 30, 2020.

Pending public feedback, we plan to refine and issue these tools in 2021 for broad use.”