Cargando…

Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta

OBJECTIVE: Research recruitment through patient portals (ie, patient-facing, web-based clinical interfaces) has the potential to be effective, efficient, and inclusive, but best practices remain undefined. We sought to better understand how patients view this recruitment approach. MATERIALS AND METH...

Descripción completa

Detalles Bibliográficos
Autores principales: Porter, Kathryn M, Kraft, Stephanie A, Speight, Candace D, Duenas, Devan M, Niyibizi, Nyiramugisha K, Mitchell, Andrea, O’Connor, M Rebecca, Gregor, Charles, Liljenquist, Kendra, Shah, Seema K, Wilfond, Benjamin S, Dickert, Neal W
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9897173/
https://www.ncbi.nlm.nih.gov/pubmed/36751464
http://dx.doi.org/10.1093/jamiaopen/ooad004
_version_ 1784882196376453120
author Porter, Kathryn M
Kraft, Stephanie A
Speight, Candace D
Duenas, Devan M
Niyibizi, Nyiramugisha K
Mitchell, Andrea
O’Connor, M Rebecca
Gregor, Charles
Liljenquist, Kendra
Shah, Seema K
Wilfond, Benjamin S
Dickert, Neal W
author_facet Porter, Kathryn M
Kraft, Stephanie A
Speight, Candace D
Duenas, Devan M
Niyibizi, Nyiramugisha K
Mitchell, Andrea
O’Connor, M Rebecca
Gregor, Charles
Liljenquist, Kendra
Shah, Seema K
Wilfond, Benjamin S
Dickert, Neal W
author_sort Porter, Kathryn M
collection PubMed
description OBJECTIVE: Research recruitment through patient portals (ie, patient-facing, web-based clinical interfaces) has the potential to be effective, efficient, and inclusive, but best practices remain undefined. We sought to better understand how patients view this recruitment approach. MATERIALS AND METHODS: We conducted 6 focus groups in Atlanta, GA and Seattle, WA with members of patient advisory committees and the general public. Discussions addressed acceptability of patient portal recruitment and communication preferences. Focus groups were audio-recorded, transcribed, and analyzed using deductive and inductive codes. Iterative team discussions identified major themes. RESULTS: Of 49 total participants, 20 were patient advisory committee members. Participants’ mean age was 49 (range 18–74); 59% identified as non-Hispanic White and 31% as Black/African American. Participants were supportive of patient portal recruitment and confident that messages were private and legitimate. Participants identified transparency and patient control over whether and how to participate as essential features. Concerns included the frequency of research messages and the ability to distinguish between research and clinical messages. Participants also discussed how patient portal recruitment might affect diversity and inclusion. DISCUSSION: Focus group participants generally found patient portal recruitment acceptable and perceived it as secure and trustworthy. Transparency, control, and attention to inclusiveness were identified as key considerations for developing best practices. CONCLUSION: For institutions implementing patient portal recruitment programs, continued engagement with patient populations can help facilitate translation of these findings into best practices and ensure that implemented strategies accomplish intended goals.
format Online
Article
Text
id pubmed-9897173
institution National Center for Biotechnology Information
language English
publishDate 2023
publisher Oxford University Press
record_format MEDLINE/PubMed
spelling pubmed-98971732023-02-06 Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta Porter, Kathryn M Kraft, Stephanie A Speight, Candace D Duenas, Devan M Niyibizi, Nyiramugisha K Mitchell, Andrea O’Connor, M Rebecca Gregor, Charles Liljenquist, Kendra Shah, Seema K Wilfond, Benjamin S Dickert, Neal W JAMIA Open Research and Applications OBJECTIVE: Research recruitment through patient portals (ie, patient-facing, web-based clinical interfaces) has the potential to be effective, efficient, and inclusive, but best practices remain undefined. We sought to better understand how patients view this recruitment approach. MATERIALS AND METHODS: We conducted 6 focus groups in Atlanta, GA and Seattle, WA with members of patient advisory committees and the general public. Discussions addressed acceptability of patient portal recruitment and communication preferences. Focus groups were audio-recorded, transcribed, and analyzed using deductive and inductive codes. Iterative team discussions identified major themes. RESULTS: Of 49 total participants, 20 were patient advisory committee members. Participants’ mean age was 49 (range 18–74); 59% identified as non-Hispanic White and 31% as Black/African American. Participants were supportive of patient portal recruitment and confident that messages were private and legitimate. Participants identified transparency and patient control over whether and how to participate as essential features. Concerns included the frequency of research messages and the ability to distinguish between research and clinical messages. Participants also discussed how patient portal recruitment might affect diversity and inclusion. DISCUSSION: Focus group participants generally found patient portal recruitment acceptable and perceived it as secure and trustworthy. Transparency, control, and attention to inclusiveness were identified as key considerations for developing best practices. CONCLUSION: For institutions implementing patient portal recruitment programs, continued engagement with patient populations can help facilitate translation of these findings into best practices and ensure that implemented strategies accomplish intended goals. Oxford University Press 2023-02-03 /pmc/articles/PMC9897173/ /pubmed/36751464 http://dx.doi.org/10.1093/jamiaopen/ooad004 Text en © The Author(s) 2023. Published by Oxford University Press on behalf of the American Medical Informatics Association. https://creativecommons.org/licenses/by-nc/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (https://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com
spellingShingle Research and Applications
Porter, Kathryn M
Kraft, Stephanie A
Speight, Candace D
Duenas, Devan M
Niyibizi, Nyiramugisha K
Mitchell, Andrea
O’Connor, M Rebecca
Gregor, Charles
Liljenquist, Kendra
Shah, Seema K
Wilfond, Benjamin S
Dickert, Neal W
Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta
title Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta
title_full Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta
title_fullStr Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta
title_full_unstemmed Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta
title_short Research recruitment through the patient portal: perspectives of community focus groups in Seattle and Atlanta
title_sort research recruitment through the patient portal: perspectives of community focus groups in seattle and atlanta
topic Research and Applications
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9897173/
https://www.ncbi.nlm.nih.gov/pubmed/36751464
http://dx.doi.org/10.1093/jamiaopen/ooad004
work_keys_str_mv AT porterkathrynm researchrecruitmentthroughthepatientportalperspectivesofcommunityfocusgroupsinseattleandatlanta
AT kraftstephaniea researchrecruitmentthroughthepatientportalperspectivesofcommunityfocusgroupsinseattleandatlanta
AT speightcandaced researchrecruitmentthroughthepatientportalperspectivesofcommunityfocusgroupsinseattleandatlanta
AT duenasdevanm researchrecruitmentthroughthepatientportalperspectivesofcommunityfocusgroupsinseattleandatlanta
AT niyibizinyiramugishak researchrecruitmentthroughthepatientportalperspectivesofcommunityfocusgroupsinseattleandatlanta
AT mitchellandrea researchrecruitmentthroughthepatientportalperspectivesofcommunityfocusgroupsinseattleandatlanta
AT oconnormrebecca researchrecruitmentthroughthepatientportalperspectivesofcommunityfocusgroupsinseattleandatlanta
AT gregorcharles researchrecruitmentthroughthepatientportalperspectivesofcommunityfocusgroupsinseattleandatlanta
AT liljenquistkendra researchrecruitmentthroughthepatientportalperspectivesofcommunityfocusgroupsinseattleandatlanta
AT shahseemak researchrecruitmentthroughthepatientportalperspectivesofcommunityfocusgroupsinseattleandatlanta
AT wilfondbenjamins researchrecruitmentthroughthepatientportalperspectivesofcommunityfocusgroupsinseattleandatlanta
AT dickertnealw researchrecruitmentthroughthepatientportalperspectivesofcommunityfocusgroupsinseattleandatlanta