Evidence map›Paper›PMID 40132190›Full record

ArticleJournal of medical Internet research2025

Balancing Risks and Opportunities: Data-Empowered-Health Ecosystems.

Lan Li, Emma Back, Suna Lee, Rebecca Shipley, Néo Mapitse, Stefan Elbe, Melanie Smallman, James Wilson, Ifat Yasin, Geraint Rees and 5 more

Abstract read
In one paragraph

Article in Journal of medical Internet research, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

3 citing papers in PubMed.

  1. Article
  2. Article
  3. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

15 authors.

Lan LiUniversity College London, London, United Kingdom.ORCID 0000-0002-5532-5764
Emma BackUniversity College London, London, United Kingdom.ORCID 0009-0006-6866-4366
Suna LeeUniversity College London, London, United Kingdom.ORCID 0000-0002-9352-3219
Rebecca ShipleyUniversity College London, London, United Kingdom.ORCID 0000-0002-2818-6228
Néo MapitseWorld Organisation for Animal Health, Paris, France.ORCID 0009-0001-9154-0402
Stefan ElbeUniversity of Sussex, Brighton, United Kingdom.ORCID 0000-0002-5567-5262
Melanie SmallmanUniversity College London, London, United Kingdom.ORCID 0000-0002-1248-196X
James WilsonUniversity College London, London, United Kingdom.ORCID 0000-0002-0911-8510
Ifat YasinUniversity College London, London, United Kingdom.ORCID 0000-0002-7055-6448
Geraint ReesUniversity College London, London, United Kingdom.ORCID 0000-0002-9623-7007
Ben GordonOur Future Health, London, United Kingdom.ORCID 0000-0002-3105-6774
Virginia MurrayUK Health Security Agency, London, United Kingdom.ORCID 0000-0003-4746-4024
Stephen L RobertsUniversity College London, London, United Kingdom.ORCID 0000-0002-6628-6780
Anna CupaniUniversity College London, London, United Kingdom.ORCID 0009-0007-4067-4682
Patty KostkovaUniversity College London, London, United Kingdom.ORCID 0000-0002-2281-3972

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

This viewpoint paper addresses the ongoing challenges and opportunities within the data-for-health ecosystem, drawing insights from a multistakeholder workshop. Despite notable progress in the digitization of health care systems, data sharing and interoperability remain limited, so the full potential of health care data is not realized. There is a critical need for data ecosystems that can enable the timely, safe, efficient, and sustainable collection and sharing of health care data. However, efforts to meet this need face risks related to privacy, data protection, security, democratic governance, and exclusion. Key challenges include poor interoperability, inconsistent approaches to data governance, and concerns about the commodification of data. While emerging platforms such as social media play a growing role in gathering and sharing health information, their integration into formal data systems remains limited. A robust and secure data-for-health ecosystem requires stronger frameworks for data governance, interoperability, and citizen engagement to build public trust. This paper argues that reframing health care data as a common good, improving the transparency of data acquisition and processing, and promoting the use of application programming interfaces (APIs) for real-time data access are essential to overcoming these challenges. In addition, it highlights the need for international norms and standards guided by multisector leadership, given the multinational nature of data sharing. Ultimately, this paper emphasizes the need to balance risks and opportunities to create a socially acceptable, secure, and effective data-sharing ecosystem in health care.

Indexed as

Information DisseminationComputer SecurityHumansapplication programming interfacesdata privacydata protectiondata sharingdecision-makingdigital healthcareecosystemshealthcare systemhealth policysocial mediatechnologies

Identifiers

PMID40132190
PMCPMC11979548

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.