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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.
Afiliação
  • Porter KM; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, USA.
  • Kraft SA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, USA.
  • Speight CD; Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA.
  • Duenas DM; Division of Cardiology, Department of Medicine, Emory University School of Medicine, Atlanta, Georgia, USA.
  • Niyibizi NK; Georgia Clinical and Translational Science Alliance, Emory University, Atlanta, Georgia, USA.
  • Mitchell A; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington, USA.
  • O'Connor MR; Georgia Clinical and Translational Science Alliance, Emory University, Atlanta, Georgia, USA.
  • Gregor C; Division of Cardiology, Department of Medicine, Emory University School of Medicine, Atlanta, Georgia, USA.
  • Liljenquist K; Georgia Clinical and Translational Science Alliance, Emory University, Atlanta, Georgia, USA.
  • Shah SK; Child, Family & Population Health Nursing, School of Nursing, University of Washington, Seattle, Washington, USA.
  • Wilfond BS; Institute of Translational Health Sciences, University of Washington, Seattle, Washington, USA.
  • Dickert NW; Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington, USA.
JAMIA Open ; 6(1): ooad004, 2023 Apr.
Article em En | MEDLINE | ID: mdl-36751464
ABSTRACT

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.
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Texto completo: 1 Coleções: 01-internacional Contexto em Saúde: 1_ASSA2030 Base de dados: MEDLINE Tipo de estudo: Guideline / Prognostic_studies / Qualitative_research Idioma: En Revista: JAMIA Open Ano de publicação: 2023 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Contexto em Saúde: 1_ASSA2030 Base de dados: MEDLINE Tipo de estudo: Guideline / Prognostic_studies / Qualitative_research Idioma: En Revista: JAMIA Open Ano de publicação: 2023 Tipo de documento: Article