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Engaging Patients via Online Healthcare Fora: Three Pharmacovigilance Use Cases

Increasingly, patient-generated safety insights are shared online, via general social media platforms or dedicated healthcare fora which give patients the opportunity to discuss their disease and treatment options. We evaluated three areas of potential interest for the use of social media in pharmac...

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Autores principales: Powell, Greg, Kara, Vijay, Painter, Jeffery L., Schifano, Lorrie, Merico, Erin, Bate, Andrew
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9204179/
https://www.ncbi.nlm.nih.gov/pubmed/35721140
http://dx.doi.org/10.3389/fphar.2022.901355
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author Powell, Greg
Kara, Vijay
Painter, Jeffery L.
Schifano, Lorrie
Merico, Erin
Bate, Andrew
author_facet Powell, Greg
Kara, Vijay
Painter, Jeffery L.
Schifano, Lorrie
Merico, Erin
Bate, Andrew
author_sort Powell, Greg
collection PubMed
description Increasingly, patient-generated safety insights are shared online, via general social media platforms or dedicated healthcare fora which give patients the opportunity to discuss their disease and treatment options. We evaluated three areas of potential interest for the use of social media in pharmacovigilance. To evaluate how social media may complement existing safety signal detection capabilities, we identified two use cases (drug/adverse event [AE] pairs) and then evaluated the frequency of AE discussions across a range of social media channels. Changes in frequency over time were noted in social media, then compared to frequency changes in Food and Drug Administration Adverse Event Reporting System (FAERS) data over the same time period using a traditional disproportionality method. Although both data sources showed increasing frequencies of AE discussions over time, the increase in frequency was greater in the FAERS data as compared to social media. To demonstrate the robustness of medical/AE insights of linked posts we manually reviewed 2,817 threads containing 21,313 individual posts from 3,601 unique authors. Posts from the same authors were linked together. We used a quality scoring algorithm to determine the groups of linked posts with the highest quality and manually evaluated the top 16 groups of posts. Most linked posts (12/16; 75%) contained all seven relevant medical insights assessed compared to only one (of 1,672) individual post. To test the capability of actively engage patients via social media to obtain follow-up AE information we identified and sent consents for follow-up to 39 individuals (through a third party). We sent target follow-up questions (identified by pharmacovigilance experts as critical for causality assessment) to those who consented. The number of people consenting to follow-up was low (20%), but receipt of follow-up was high (75%). We observed completeness of responses (37 out of 37 questions answered) and short average time required to receive the follow-up (1.8 days). Our findings indicate a limited use of social media data for safety signal detection. However, our research highlights two areas of potential value to pharmacovigilance: obtaining more complete medical/AE insights via longitudinal post linking and actively obtaining rapid follow-up information on AEs.
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spelling pubmed-92041792022-06-18 Engaging Patients via Online Healthcare Fora: Three Pharmacovigilance Use Cases Powell, Greg Kara, Vijay Painter, Jeffery L. Schifano, Lorrie Merico, Erin Bate, Andrew Front Pharmacol Pharmacology Increasingly, patient-generated safety insights are shared online, via general social media platforms or dedicated healthcare fora which give patients the opportunity to discuss their disease and treatment options. We evaluated three areas of potential interest for the use of social media in pharmacovigilance. To evaluate how social media may complement existing safety signal detection capabilities, we identified two use cases (drug/adverse event [AE] pairs) and then evaluated the frequency of AE discussions across a range of social media channels. Changes in frequency over time were noted in social media, then compared to frequency changes in Food and Drug Administration Adverse Event Reporting System (FAERS) data over the same time period using a traditional disproportionality method. Although both data sources showed increasing frequencies of AE discussions over time, the increase in frequency was greater in the FAERS data as compared to social media. To demonstrate the robustness of medical/AE insights of linked posts we manually reviewed 2,817 threads containing 21,313 individual posts from 3,601 unique authors. Posts from the same authors were linked together. We used a quality scoring algorithm to determine the groups of linked posts with the highest quality and manually evaluated the top 16 groups of posts. Most linked posts (12/16; 75%) contained all seven relevant medical insights assessed compared to only one (of 1,672) individual post. To test the capability of actively engage patients via social media to obtain follow-up AE information we identified and sent consents for follow-up to 39 individuals (through a third party). We sent target follow-up questions (identified by pharmacovigilance experts as critical for causality assessment) to those who consented. The number of people consenting to follow-up was low (20%), but receipt of follow-up was high (75%). We observed completeness of responses (37 out of 37 questions answered) and short average time required to receive the follow-up (1.8 days). Our findings indicate a limited use of social media data for safety signal detection. However, our research highlights two areas of potential value to pharmacovigilance: obtaining more complete medical/AE insights via longitudinal post linking and actively obtaining rapid follow-up information on AEs. Frontiers Media S.A. 2022-06-03 /pmc/articles/PMC9204179/ /pubmed/35721140 http://dx.doi.org/10.3389/fphar.2022.901355 Text en Copyright © 2022 Powell, Kara, Painter, Schifano, Merico and Bate. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Pharmacology
Powell, Greg
Kara, Vijay
Painter, Jeffery L.
Schifano, Lorrie
Merico, Erin
Bate, Andrew
Engaging Patients via Online Healthcare Fora: Three Pharmacovigilance Use Cases
title Engaging Patients via Online Healthcare Fora: Three Pharmacovigilance Use Cases
title_full Engaging Patients via Online Healthcare Fora: Three Pharmacovigilance Use Cases
title_fullStr Engaging Patients via Online Healthcare Fora: Three Pharmacovigilance Use Cases
title_full_unstemmed Engaging Patients via Online Healthcare Fora: Three Pharmacovigilance Use Cases
title_short Engaging Patients via Online Healthcare Fora: Three Pharmacovigilance Use Cases
title_sort engaging patients via online healthcare fora: three pharmacovigilance use cases
topic Pharmacology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9204179/
https://www.ncbi.nlm.nih.gov/pubmed/35721140
http://dx.doi.org/10.3389/fphar.2022.901355
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