ArticleBMC medicine2019
Real-world data and the patient perspective: the PROmise of social media?
Article in BMC medicine, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers, 1 of them a synthesis that pooled 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.
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.
Who cites it
37 citing papers in PubMed, 1 synthesis or guideline pooled it, 70 citations in OpenAlex.
- Social Media Use for Health Purposes: Systematic Review.Journal of medical Internet research · 2021Pooled it
- Patient and Caregiver Information-seeking in Lung Cancer Treatment: A Real-world Sentiment Analysis of Reddit Communities.Journal of cancer education : the official journal of the American Association for Cancer Education · 2026Article
- How Social Media Analysis Offers an Opportunity to Understand the Reality of People Living With Multiple Sclerosis: Descriptive French Study.JMIR infodemiology · 2026Article
- The Double-Edged Role of Social Media in Modern Healthcare: Awareness, Impact, and Misinformation.Journal of immunotherapy and precision oncology · 2026Review
- Social Media Perspectives on Congenital Heart Disease: Integrating Thematic and Sentiment Analysis to Characterize the Digital Health Footprint.Pediatric cardiology · 2026Article
- Management of Head and Neck Paragangliomas: AGREE II Appraisal of Clinical Practice Guidelines.Annals of surgical oncology · 2025Article
- Article
- Characterizing Public Sentiments and Drug Interactions in the COVID-19 Pandemic Using Social Media: Natural Language Processing and Network Analysis.Journal of medical Internet research · 2025Article
- Understanding stakeholders' experience with sickle cell disease by social media listening across Europe.Frontiers in genetics · 2025Article
- Attitudes towards the treatment of nausea and vomiting in pregnancy: results from a nationwide online study in Germany.Frontiers in global women's health · 2025Article
- Using Natural Language Processing and Social Media Data to Understand the Lived Experience of People with Fibromyalgia.Healthcare (Basel, Switzerland) · 2024Article
- Natural Language Processing-Powered Real-Time Monitoring Solution for Vaccine Sentiments and Hesitancy on Social Media: System Development and Validation.JMIR medical informatics · 2024Article
- Experiences of Women With Medical Abortion Care Reflected in Social Media (VEILLE Study): Noninterventional Retrospective Exploratory Infodemiology Study.JMIR infodemiology · 2024Article
- Using Social Media as a Source of Real-World Data for Pharmaceutical Drug Development and Regulatory Decision Making.Drug safety · 2024Article
- Crowdsourcing-Based Knowledge Graph Construction for Drug Side Effects Using Large Language Models with an Application on Semaglutide.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2024Article
- Leveraging patient experience data to guide medicines development, regulation, access decisions and clinical care in the EU.Frontiers in medicine · 2024Review
- Patient listening on social media for patient-focused drug development: a synthesis of considerations from patients, industry and regulators.Frontiers in medicine · 2024Article
- Social Media and Apps in Urology.Current surgery reports · 2023Review
- Comparing the Discussion of Telehealth in Two Social Media Platforms: Social Listening Analysis.Telemedicine reports · 2023Article
- The patient experience of relapsed refractory multiple myeloma and perspectives on emerging therapies.Cancer reports (Hoboken, N.J.) · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Understanding the patient perspective is fundamental to delivering patient-centred care. In most healthcare systems, however, patient-reported outcomes are not regularly collected or recorded as part of routine clinical care, despite evidence that doing so can have tangible clinical benefit. In the absence of the routine collection of these data, research is beginning to turn to social media as a novel means to capture the patient voice. Publicly available social media data can now be analysed with relative ease, bypassing many logistical hurdles associated with traditional approaches and allowing for accelerated and cost-effective data collection. Existing work has shown these data can offer credible insight into the patient experience, although more work is needed to understand limitations with respect to patient representativeness and nuances of captured experience. Nevertheless, linking social media to electronic medical records offers a significant opportunity for patient views to be systematically collected for health services research and ultimately to improve patient care.
Indexed as
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What OpenQuestion holds
Registered trials
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.