Cancer survivor perspectives on sharing patient-generated health data with central cancer registries.
Qual Life Res
; 28(11): 2957-2967, 2019 Nov.
Article
en En
| MEDLINE
| ID: mdl-31399859
PURPOSE: Central cancer registries collect data and provide population-level statistics that can be tracked over time; yet registries may not capture the full range of clinically relevant outcomes. Patient-generated health data (PGHD) include health/treatment history, biometrics, and patient-reported outcomes (PROs). Collection of PGHD would broaden registry outcomes to better inform research, policy, and care. However, this is dependent on the willingness of patients to share such data. This study examines cancer survivors' perspectives about sharing PGHD with central cancer registries. METHODS: Three U.S. central registries sampled colorectal, non-Hodgkin lymphoma, and metastatic breast cancer survivors 1-4 years after diagnosis, recruiting them via mail to participate in one of seven focus groups (n = 52). Group discussions were recorded, transcribed, and thematically analyzed. RESULTS: Most survivor-participants were unaware of the existence of registries. After having registries explained, all participants expressed their willingness to share PGHD with them if treated confidentially. Participants were willing to provide information on a variety of topics (e.g., medical history, medications, symptoms, financial difficulties, quality of life, biometrics, nutrition, exercise, and mental health), with a focus on long-term effects of cancer and its treatment. Participants' preferred mode for providing data varied. Participants were also interested in receiving information from registries. CONCLUSIONS: Our results suggest that registry-based collection of PGHD is acceptable to most cancer survivors and could facilitate registry-based efforts to collect PGHD/PROs. Central cancer registry-based collection of PGHD/PROs, especially on long-term effects, could enhance registry support of cancer control efforts including research and population health management.
Palabras clave
Texto completo:
1
Colección:
01-internacional
Banco de datos:
MEDLINE
Asunto principal:
Calidad de Vida
/
Sistema de Registros
/
Recolección de Datos
/
Atención a la Salud
/
Medición de Resultados Informados por el Paciente
/
Supervivientes de Cáncer
/
Manejo de Datos
Tipo de estudio:
Qualitative_research
Límite:
Female
/
Humans
/
Male
/
Middle aged
Idioma:
En
Revista:
Qual Life Res
Asunto de la revista:
REABILITACAO
/
TERAPEUTICA
Año:
2019
Tipo del documento:
Article
País de afiliación:
Estados Unidos