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...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2022-06-01
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| Series: | Frontiers in Pharmacology |
| Subjects: | |
| Online Access: | https://www.frontiersin.org/articles/10.3389/fphar.2022.901355/full |
| _version_ | 1811249240057315328 |
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| author | Greg Powell Vijay Kara Jeffery L. Painter Lorrie Schifano Erin Merico Andrew Bate |
| author_facet | Greg Powell Vijay Kara Jeffery L. Painter Lorrie Schifano Erin Merico Andrew Bate |
| author_sort | Greg Powell |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-04-12T15:43:04Z |
| format | Article |
| id | doaj.art-36c8e1001ad94331ae469bba8b42a388 |
| institution | Directory Open Access Journal |
| issn | 1663-9812 |
| language | English |
| last_indexed | 2024-04-12T15:43:04Z |
| publishDate | 2022-06-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Pharmacology |
| spelling | doaj.art-36c8e1001ad94331ae469bba8b42a3882022-12-22T03:26:44ZengFrontiers Media S.A.Frontiers in Pharmacology1663-98122022-06-011310.3389/fphar.2022.901355901355Engaging Patients via Online Healthcare Fora: Three Pharmacovigilance Use CasesGreg Powell0Vijay Kara1Jeffery L. Painter2Lorrie Schifano3Erin Merico4Andrew Bate5GSK, Durham, NC, United StatesGSK, London, United KingdomGSK, Durham, NC, United StatesGSK, Durham, NC, United StatesCollege of Pharmacy, Northeast Ohio Medical University, Rootstown, OH, United StatesGSK, London, United KingdomIncreasingly, 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.https://www.frontiersin.org/articles/10.3389/fphar.2022.901355/fulladverse event reportingsafety signal detectionfollow-up reportsocial mediapatient forumshealthcare fora |
| spellingShingle | Greg Powell Vijay Kara Jeffery L. Painter Lorrie Schifano Erin Merico Andrew Bate Engaging Patients via Online Healthcare Fora: Three Pharmacovigilance Use Cases Frontiers in Pharmacology adverse event reporting safety signal detection follow-up report social media patient forums healthcare fora |
| 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 | adverse event reporting safety signal detection follow-up report social media patient forums healthcare fora |
| url | https://www.frontiersin.org/articles/10.3389/fphar.2022.901355/full |
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