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An emerging research landscape: new actors, data sources and responsible practices
An emerging research landscape: new actors, data sources and responsible practices
- Collection:
- Health Policy and Services Research
- Author(s):
- Nebeker, Camille, author
- Contributor(s):
- AcademyHealth, issuing body.
- Publication:
- [Washington, DC] : AcademyHealth, August 2021
- Language(s):
- English
- Format:
- Text
- Subject(s):
- Delivery of Health Care
Health Services Research
United States - Genre(s):
- Technical Report
- Abstract:
- The Paradigm Project, convened by AcademyHealth and funded by the Robert Wood Johnson Foundation, is generating solutions to improve the ways health services research (HSR) is conceived, conducted, and used. This Horizon Scan highlights relevant issues and opportunities related to novel or emerging methods and data sources, and the innovative ways various actors might use these to generate improved research insights. Technological advancements afford opportunities to access more data than ever before, which contributes to the changing HSR paradigm. New social media platforms and technological devices (e.g., smartphones, wearables) generate an ever growing and diversifying body of information which, even if collected beyond a health context, can help us understand individual- and population-level health trends. New forms and uses of data require the creation of new ethical frameworks, governance structures, and a strong, modern, and adaptable data infrastructure.8 As technology becomes more accessible and new actors engage in research, the field needs a corresponding trust infrastructure: preserving data privacy, honoring data ownership, protecting intellectual property, and encouraging cross-sector ethics reviews. Diverse actors, data sources and research approaches: Common HSR data sources including surveys, claims data, and electronic health records (EHRs) are increasingly supplemented with patient-generated health data (PGHD) from wearables and in-home or remote monitoring devices. Consumer-level data linked to loyalty cards, social media posts, and internet search histories (collected by health start-ups, tech companies, citizen scientists, etc.) can now be used in HSR. Similarly, the field has begun using new approaches (contrasted with those used for highly rigorous randomized control trials, or RCTs) to supplement existing methods – with the aim of improving research timeliness and generalizability. To maximize impact, researchers must ensure ethical use of new data and methods – and develop an ethical data infrastructure for the HSR ecosystem.
- Copyright:
- Reproduced with permission of the copyright holder. Further use of the material is subject to CC BY license. (More information)
- Extent:
- 1 online resource (1 PDF file (24 pages))
- Illustrations:
- Illustrations
- NLM Unique ID:
- 9918384884106676 (See catalog record)
- Permanent Link:
- http://resource.nlm.nih.gov/9918384884106676