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Quality of Life Research

Erschienen in:

09.08.2019

Cancer survivor perspectives on sharing patient-generated health data with central cancer registries

Erschienen in: Quality of Life Research | Ausgabe 11/2019

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Abstract

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.

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Titel: Cancer survivor perspectives on sharing patient-generated health data with central cancer registries
Publikationsdatum: 09.08.2019
Erschienen in: Quality of Life Research / Ausgabe 11/2019
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-019-02263-0

Springer Medizin

Abstract

Purpose

Methods

Results

Conclusions

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