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Evolution of a research team: the patient partner perspective.
Madison, Suzanne; Colon-Moya, Alex D; Morales-Cosme, Wilfredo; Lorenzi, Margie; Diaz, Aracelis; Hickson, Bridget; Monteiro, Kathy; Muniz Ruiz, Alexander; Perez, Addie; Redondo, Richard; Reid, Dennis; Robles, Janet; Santiago, Marsha; Thompson, Opal; Wade, Joyce; White, Mary; Castillo, Graciela; Valenzuela, Cristian.
Afiliação
  • Madison S; Patient Partner/Advisor, 6337 Alderwood Circle, #B, St. Paul, MN, 55129, USA. suzannemadison2013@gmail.com.
  • Colon-Moya AD; Patient Partner/Advisor, South Jordan, UT, USA.
  • Morales-Cosme W; Patient Partner/Advisor, Bayamon, Puerto Rico.
  • Lorenzi M; Patient Partner/Advisor, Hyde Park, MA, USA.
  • Diaz A; Patient Partner/Advisor, Corozal, Puerto Rico.
  • Hickson B; Patient Partner/Advisor, Dorchester, MA, USA.
  • Monteiro K; Patient Partner/Advisor, Dorchester, MA, USA.
  • Muniz Ruiz A; Patient Partner/Advisor, Orlando, FL, USA.
  • Perez A; Patient Partner/Advisor, Corozal, Puerto Rico.
  • Redondo R; Patient Partner/Advisor, Yuma, AZ, USA.
  • Reid D; Patient Partner/Advisor, Winter Park, FL, USA.
  • Robles J; Patient Partner/Advisor, New York, NY, USA.
  • Santiago M; Patient Partner/Advisor, Bronx, NY, USA.
  • Thompson O; Patient Partner/Advisor, Boston, MA, USA.
  • Wade J; Patient Partner/Advisor, Euclid, OH, USA.
  • White M; Patient Partner/Advisor, Dorchester, MA, USA.
  • Castillo G; American Institutes for Research, 1400 Crystal City Drive, 10th Floor, Arlington, VA, 22202, USA.
  • Valenzuela C; American Institutes for Research, 1400 Crystal City Drive, 10th Floor, Arlington, VA, 22202, USA.
Res Involv Engagem ; 8(1): 42, 2022 Aug 24.
Article em En | MEDLINE | ID: mdl-36002877
Patients and caregivers who have lived with a condition have an important and unique perspective researchers should consider. To this end, patients and caregivers have expanded their involvement in the design and conduct of clinical research, joining research teams and being engaged in the research process from start to finish. Researchers have reported on the positive impact that these "patient partners" or "patient advisors" have on research. But few papers report on the impact on the patient partners/advisors from being on a research team.Here we report the lived experiences of the 16 Patient Partners who served on the research team for a large study of 1200 African American/Black (AA/B) and Hispanic/Latinx (H/L) adults with asthma. These Patient Partners offered their input over 7 years, spanning from study design, study conduct, understanding results, to sharing results.To understand the Patient Partners' experiences, we conducted interviews asking about their journey on the research team. Motivations and reasons they became Patient Partners Initial experiences with the research team If and how over time, they became comfortable and developed confidence If and how the research team made them feel valued and respected The personal and professional impact of being a Patient Partner Their advice to researchers and fellow patients considering including or joining as Patient Partners or advisors By reporting the perspectives of these 16 Patient Partners, we hope to support continued movement toward broader and better inclusion of patients and caregivers on research teams.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Tipo de estudo: Prognostic_studies / Qualitative_research Idioma: En Ano de publicação: 2022 Tipo de documento: Article

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Tipo de estudo: Prognostic_studies / Qualitative_research Idioma: En Ano de publicação: 2022 Tipo de documento: Article