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An Emerging Research Landscape: New Actors, Data Sources and Responsible Practices

This horizon scan presents findings from work supported by a Robert Wood Johnson Foundation-funded initiative exploring notable practice and paradigm shifts in the field of health services research (HSR). It intentionally features examples and insights from related or tangential fields, to help highlight new opportunities for innovation and advancement in HSR.

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Technological advancements afford opportunities to access more data than ever before, which contributes to the changing health services research (HSR) paradigm. New social media platforms and technological devices generate an ever growing and diversifying body of information, which can provide insights into important individual- and population-level health trends.

Ensuring meaningful, responsible use of these proliferating data requires the creation of new standards, ethical frameworks, and governance structures; it also depends on a strong, modern, and adaptable data infrastructure. As technology becomes more accessible and new actors engage in research, the field needs a corresponding trust infrastructure: preserving data privacy, honoring data ownership, policies protecting intellectual property, and encouraging cross-sector ethics reviews.

This horizon scan presents four case studies, intentionally featuring examples and insights related to the use of data from both new and emerging sources – including data collected from unconventional sources. Nebeker analyzes each case study using the original Digital Health Checklist and Framework for Researchers (DHC-R) tool that prompts scientists to consider the ethical implications of their research practices. The analysis and discussion highlight new opportunities and considerations for ethical data use, responsible research practice, and building the trust infrastructure needed to promote innovation and advancement in the field of HSR.

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Author, Member, Researcher

Camille Nebeker, M.S., Ed.D.

Associate Professor - UC San Diego

Camille Nebeker, EdD, MS, is an Associate Professor with appointments with the UC San Diego Design Lab and the... Read Bio