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

Qual Life Res. 2019 Nov;28(11):2957-2967. doi: 10.1007/s11136-019-02263-0. Epub 2019 Aug 9.


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.

Keywords: Cancer survivors; Focus groups; Patient generated health data; Patient-reported outcome measures; Quality of life; Registries.

MeSH terms

  • Cancer Survivors / psychology*
  • Data Collection / methods*
  • Data Management / methods*
  • Delivery of Health Care / methods*
  • Female
  • Focus Groups
  • Humans
  • Male
  • Middle Aged
  • Patient Reported Outcome Measures*
  • Quality of Life / psychology*
  • Registries / standards*