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

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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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Acknowledgements

The authors acknowledge the contributions of the staff of the central cancer registries where the study was conducted, who helped with sampling, recruitment, and conducting the focus groups. The authors are grateful to the patient participants who generously shared their time and perspectives. The views expressed here are those of the authors, and do not necessarily represent The American Cancer Society.

Funding

Intramural funding was provided by the Metastatic Breast Cancer Alliance and the American Cancer Society. Support was also provided by the National Cancer Institute Surveillance, Epidemiology, and End Results Program under Contract HHSN261201800003I Task Order HHSN26100001, Contract HHSN261201800014I Task Order HHSN26100001, and Contract HHSN261201800007I, Task Order HHSN26100002; as well as by the Centers for Disease Control and Prevention National Program of Cancer Registries under cooperative agreements 5NU58DP003875-04 and 5NU58DP006332-02-00.

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Authors and Affiliations

  1. Behavioral and Epidemiology Research Group, American Cancer Society, 250 Williams Street, Atlanta, GA, 30303, USA

    T. G. Smith

  2. Westat, Rockville, MD, USA

    M. E. Dunn, K. Y. Levin & S. P. Tsakraklides

  3. National Cancer Institute, Bethesda, MD, USA

    S. A. Mitchell

  4. Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands

    L. V. van de Poll-Franse & N. K. Aaronson

  5. Department of Medical and Clinical Psychology, Center of Research on Psychology in Somatic Diseases (CoRPS), Tilburg University, Tilburg, The Netherlands

    L. V. van de Poll-Franse

  6. Department of Research, Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands

    L. V. van de Poll-Franse

  7. Emory University, Atlanta, GA, USA

    K. C. Ward

  8. New Mexico Tumor Registry, Albuquerque, NM, USA

    C. L. Wiggins

  9. Louisiana Tumor Registry/ School of Public Health Epidemiology Program, Louisiana State University Health Sciences Center, New Orleans, LA, USA

    X. C. Wu

  10. Metastatic Breast Cancer Alliance, New York, NY, USA

    M. Hurlbert

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  1. T. G. Smith
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Correspondence to T. G. Smith.

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The authors have no conflicts of interest with regard to this paper.

Ethical approval

All procedures performed in this study were approved by the Westat institutional review board (Project Number 6153.44), and performed in accordance with the ethical standards of the 1964 Declaration of Helsinki and its later amendments or comparable standards.

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Informed consent was obtained from all study participants.

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Smith, T.G., Dunn, M.E., Levin, K.Y. et al. Cancer survivor perspectives on sharing patient-generated health data with central cancer registries. Qual Life Res 28, 2957–2967 (2019). https://doi.org/10.1007/s11136-019-02263-0

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