Social media and pharmacovigilance: A review of the opportunities and challenges

Sloane, R. J.; Osanlou, Orod; Lewis, Donna; Bollegala, Danushka; Maskell, Simon; Pirmohamed, Munir

doi:10.1111/bcp.12717

Cited by 119 publications

(97 citation statements)

References 48 publications

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“…Patients are increasingly using social media to search for and exchange information about their health status [48]. At the moment, much research is ongoing to see if social media data mining can contribute to signal detection [49][50][51][52] and whether it does so in a way that enables early detection of signals, including geographical trends.…”

Section: New Ways Of Collecting Safety Information From Patientsmentioning

confidence: 99%

See 1 more Smart Citation

Patient-Reported Safety Information: A Renaissance of Pharmacovigilance?

Härmark

Raine²,

Leufkens

et al. 2016

Drug Saf

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The role of patients as key contributors in pharmacovigilance was acknowledged in the new EU pharmacovigilance legislation. This contains several efforts to increase the involvement of the general public, including making patient adverse drug reaction (ADR) reporting systems mandatory. Three years have passed since the legislation was introduced and the key question is: does pharmacovigilance yet make optimal use of patient-reported safety information? Independent research has shown beyond doubt that patients make an important contribution to pharmacovigilance signal detection. Patient reports provide first-hand information about the suspected ADR and the circumstances under which it occurred, including medication errors, quality failures, and 'near misses'. Patient-reported safety information leads to a better understanding of the patient's experiences of the ADR. Patients are better at explaining the nature, personal significance and consequences of ADRs than healthcare professionals' reports on similar associations and they give more detailed information regarding quality of life including psychological effects and effects on everyday tasks. Current methods used in pharmacovigilance need to optimise use of the information reported from patients. To make the most of information from patients, the systems we use for collecting, coding and recording patient-reported information and the methodologies applied for signal detection and assessment need to be further developed, such as a patient-specific form, development of a severity grading and evolution of the database structure and the signal detection methods applied. It is time for a renaissance of pharmacovigilance.

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Section: New Ways Of Collecting Safety Information From Patientsmentioning

confidence: 99%

“…How would patients using social media react when approached for additional information by organisations that collect pharmacovigilance data? [50] Since this is a new area, ethically sound policy guidance needs to be developed.…”

Section: New Ways Of Collecting Safety Information From Patientsmentioning

confidence: 99%

Patient-Reported Safety Information: A Renaissance of Pharmacovigilance?

Härmark

Raine²,

Leufkens

et al. 2016

Drug Saf

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“…Using social media as a data source for pharmacoepidemiological research or pharmacovigilance is challenging due to technical, regulatory and ethical issues . In a 2014 study, a limited number of chats on French forums was analysed to assess the quality and reliability of information on medication use in pregnancy shared by Internet users .…”

Section: Introductionmentioning

confidence: 99%

“…Using social media as a data source for pharmacoepidemiological research or pharmacovigilance is challenging due to technical, regulatory and ethical issues. 12,13 In a 2014 study, a limited number of chats on French forums was analysed to assess the quality and reliability of information on medication use in pregnancy shared by Internet users. 14 15 As both previous studies selected only one source of online information, these do not provide a complete overview of the quality and quantity of social media information available to pregnant women.…”

mentioning

confidence: 99%

Social media monitoring on the perceived safety of medication use during pregnancy: A case study from the Netherlands

Gelder

Rog²,

Bredie

et al. 2019

Brit J Clinical Pharma

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Aims An increasing number of women trust the Internet for information about medication safety during pregnancy. This study aimed to evaluate the availability and accuracy of social media content on the perceived safety of medication use in pregnancy. Methods We performed a systematic search of posts related to medication safety during pregnancy in the Dutch language published on social media, blogs and forums between May 2011 and April 2016 using Coosto, a tool for social media monitoring. The perceived safety in the posts was compared with the Dutch Teratology Information Service (TIS) safety classifications. Results We included 1224 online posts, which described 1441 scenarios about medication safety in pregnancy. A total of 820 (57%) scenarios were in line with the TIS classification. Incorrect perception was higher for prescription medication compared to medication available over‐the‐counter (60 vs 25%). Furthermore, the safety classification of medications with a TIS classification on strict indication or second‐line drugs (93%) and medications with insufficient knowledge on their safety during pregnancy (76%) was more likely to be incorrectly perceived by the public compared to medications with the TIS classification safe (24%). Conclusions Social media monitoring may be useful for surveillance of potentially unsafe use of medications in pregnancy. Many social posts related to medication safety during pregnancy provide inaccurate information. As this information may affect women's perceptions and decisions, accurate communication between healthcare providers and pregnant women regarding the benefits and risks of medications is vital.

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“…Recent projects or collaboration aimed at investigating the quality of social media data as well as to investigate the most performant method to do web-based signal detection. The use of webbased data (such as, query logs and social media) is emerging among regulators (FDA and EMA), industry and academia [5,6,[8][9][10][11]. As an example, a public private partnership between the European Commission and European Federation of Pharmaceutical Industries and Associations, called WEB-RADR -Recognising Adverse Drug Reactions has been launched in 2014.…”

Section: Introductionmentioning

confidence: 99%

Web-Based Signal Detection Using Medical Forums Data in France: Comparative Analysis (Preprint)

Kürzinger¹,

Schück²,

Texier³

et al. 2018

Preprint

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Background: While traditional signal detection methods in pharmacovigilance are based on spontaneous reports, the use of social media is emerging. The potential strength of webbased data relies on their volume and real time availability allowing early signals of disproportionate reporting (SDRs) detection.Objectives: This study aimed at assessing (1) the consistency of SDRs detected from patient's medical forums in France compared to traditional reporting systems and (2) the ability of identifying SDRs earlier than the traditional reporting systems. Methods:Messages posted on patients' forums between 2005 and 2015 were used. Eight disproportionality definitions were retained. Comparison of SDRs from the forums to SDRs detected in VigiBase® was done by describing the sensitivity, specificity, positive predictive value (PPV), negative predictive value (NPV), accuracy, the Receiver Operating Characteristics curve and the area under the curve (AUC). Time difference in months between the detection dates of SDRs from the forums and from VigiBase® was provided. Results:Comparison analysis showed that the sensitivity ranged from 29 to 50.6%, the specificity from 86.1 to 95.5%, the PPV from 51.2 to 75.4%, the NPV from 68.5 to 91.6% and the accuracy from 68 to 87.7%. The AUC reached 0.85 when using the metric EBGM. Up to 37.5% of the SDRs were detected earlier in the forums than in VigiBase®. Conclusion:The specificity, PPV and NPV were high. The overall performance was good showing that data from medical forums may be a valuable source for signal detection. In total, up to 37.5% of the SDRs could have been detected earlier, thus facilitating increased safety of the patients. Further enhancements are needed to investigate the reliability and validation of patients' medical forums worldwide, the extension of this analysis to all possible drugs or at least to a wider selection of drugs as well as to further assess performance against established signals.

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Social media and pharmacovigilance: A review of the opportunities and challenges

Cited by 119 publications

References 48 publications

Patient-Reported Safety Information: A Renaissance of Pharmacovigilance?

Patient-Reported Safety Information: A Renaissance of Pharmacovigilance?

Social media monitoring on the perceived safety of medication use during pregnancy: A case study from the Netherlands

Web-Based Signal Detection Using Medical Forums Data in France: Comparative Analysis (Preprint)

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