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01-11-2019

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

Authors: T. G. Smith, M. E. Dunn, K. Y. Levin, S. P. Tsakraklides, S. A. Mitchell, L. V. van de Poll-Franse, K. C. Ward, C. L. Wiggins, X. C. Wu, M. Hurlbert, N. K. Aaronson

Published in: Quality of Life Research | Issue 11/2019

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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Centers for Disease Control and Prevention. (2019). Introducing Healthy People 2020. https://www.healthypeople.gov/2020/About-Healthy-People. Accessed 21 January 2019.

Kassler, W. J., Howerton, M., Thompson, A., Cope, E., Alley, D. E., & Sanghavi, D. (2017). Population health measurement at centers for medicare & medicaid services: Bridging the gap between public health and clinical quality. Population Health Management, 20(3), 173–180. https://doi.org/10.1089/pop.2016.0038.CrossRefPubMed

Kindig, D., & Stoddart, G. (2003). What is population health? American Journal of Public Health, 93(3), 380–383.CrossRef

Siddiqui, A. H., & Zafar, S. N. (2018). Global availability of cancer registry data. Journal of Global Oncology, 4, 1–3. https://doi.org/10.1200/JGO.18.00116.CrossRefPubMed

White, M. C., Babcock, F., Hayes, N. S., Mariotto, A. B., Wong, F. L., Kohler, B. A., et al. (2017). The history and use of cancer registry data by public health cancer control programs in the United States. Cancer, 123(Suppl 24), 4969–4976. https://doi.org/10.1002/cncr.30905.CrossRefPubMedPubMedCentral

Cella, D., & Stone, A. A. (2015). Health-related quality of life measurement in oncology: Advances and opportunities. American Psychologist, 70(2), 175–185. https://doi.org/10.1037/a0037821.CrossRefPubMed

Ahmed, S., Berzon, R. A., Revicki, D. A., Lenderking, W. R., Moinpour, C. M., Basch, E., et al. (2012). The use of patient-reported outcomes (PRO) within comparative effectiveness research: Implications for clinical practice and health care policy. Medical Care, 50(12), 1060–1070. https://doi.org/10.1097/MLR.0b013e318268aaff.CrossRefPubMed

Andersen, B. L., DeRubeis, R. J., Berman, B. S., Gruman, J., Champion, V. L., Massie, M. J., et al. (2014). Screening, assessment, and care of anxiety and depressive symptoms in adults with cancer: An American Society of Clinical Oncology guideline adaptation. Journal of Clinical Oncology, 32(15), 1605–1619. https://doi.org/10.1200/jco.2013.52.4611.CrossRefPubMedPubMedCentral

Bower, J. E., Bak, K., Berger, A., Breitbart, W., Escalante, C. P., Ganz, P. A., et al. (2014). Screening, assessment, and management of fatigue in adult survivors of cancer: An American Society of Clinical oncology clinical practice guideline adaptation. Journal of Clinical Oncology, 32(17), 1840–1850. https://doi.org/10.1200/jco.2013.53.4495.CrossRefPubMedPubMedCentral

10.

Johnson, L. A. (2014). Putting evidence into practice. Clinical Journal of Oncology Nursing, 18(Suppl), 2–4. https://doi.org/10.1188/14.Cjon.S3.2-4.CrossRefPubMed

11.

National Comprehensive Cancer Network. (2018). NCCN clinical practice guidelines in oncology: Cancer-related fatigue version 2.2018. Fort Washington: National Comprehensive Cancer Network.

12.

National Comprehensive Cancer Network. (2018). NCCN clinical practice guidelines in oncology: Adult cancer pain version 1.2018. Fort Washington: National Comprehensive Cancer Network.

13.

National Comprehensive Cancer Network. (2018). NCCN clinical practice guidelines in oncology: Distress management version 2.2018. Fort Washington: National Comprehensive Cancer Network.

14.

National Quality Forum. (2013). Patient reported outcomes (PROs) in performance measurement. Washington, DC: NQF.

15.

Basch, E., Spertus, J., Dudley, R. A., Wu, A., Chuahan, C., Cohen, P., et al. (2015). Methods for developing patient-reported outcome-based performance measures (PRO-PMs). Value Health, 18(4), 493–504. https://doi.org/10.1016/j.jval.2015.02.018.CrossRefPubMed

16.

Centers for Medicare & Medicaid Services. (2018). Blueprint for the CMS measures management system (version 14.0). Washington, DC: CMS.

17.

European Medicines Agency. (2016). The guideline on the evaluation of anticancer medicinal products in man: Appendix 2 The use of patient-reported outcome (PRO) measures in oncology studies. London, UK: EMA.

18.

Kluetz, P. G., Slagle, A., Papadopoulos, E. J., Johnson, L. L., Donoghue, M., Kwitkowski, V. E., et al. (2016). Focusing on core patient-reported outcomes in cancer clinical trials: Symptomatic adverse events, physical function, and disease-related symptoms. Clinical Cancer Research, 22(7), 1553–1558. https://doi.org/10.1158/1078-0432.Ccr-15-2035.CrossRefPubMed

19.

Kluetz, P. G., Chingos, D. T., Basch, E. M., & Mitchell, S. A. (2016). Patient-reported outcomes in cancer clinical trials: Measuring symptomatic adverse events with the National Cancer Institute’s patient-reported outcomes version of the common terminology criteria for adverse events (PRO-CTCAE). American Society of Clinical Oncology Educational Book, 35, 67–73. https://doi.org/10.1200/edbk_159514.CrossRefPubMed

20.

National Institutes of Health. (2019). PROMIS program snapshot. https://commonfund.nih.gov/promis/index. Accessed 31 January 2019.

21.

Barile, J. P., Reeve, B. B., Smith, A. W., Zack, M. M., Mitchell, S. A., Kobau, R., et al. (2013). Monitoring population health for Healthy People 2020: Evaluation of the NIH PROMIS(R) Global Health, CDC Healthy Days, and satisfaction with life instruments. Quality of Life Research, 22(6), 1201–1211. https://doi.org/10.1007/s11136-012-0246-z.CrossRefPubMed

22.

Thong, M. S., Mols, F., Stein, K. D., Smith, T., Coebergh, J. W., & van de Poll-Franse, L. V. (2013). Population-based cancer registries for quality-of-life research: A work-in-progress resource for survivorship studies? Cancer, 119(Suppl 11), 2109–2123. https://doi.org/10.1002/cncr.28056.CrossRefPubMed

23.

Chawla, N., Urato, M., Ambs, A., Schussler, N., Hays, R. D., Clauser, S. B., et al. (2015). Unveiling SEER-CAHPS(R): A new data resource for quality of care research. Journal of General Internal Medicine, 30(5), 641–650. https://doi.org/10.1007/s11606-014-3162-9.CrossRefPubMedPubMedCentral

24.

Kent, E. E., Malinoff, R., Rozjabek, H. M., Ambs, A., Clauser, S. B., Topor, M. A., et al. (2016). Revisiting the Surveillance Epidemiology and End Results Cancer Registry and Medicare Health Outcomes Survey (SEER-MHOS) linked data resource for patient-reported outcomes research in older adults with cancer. Journal of the American Geriatrics Society, 64(1), 186–192. https://doi.org/10.1111/jgs.13888.CrossRefPubMed

25.

White House Cancer Moonshot Task Force. (2016). Report of the cancer moonshot task force.

26.

Gliklich, R. E., Dreyer, N. A., & Leavy, M. B. (2014). Registries for evaluating patient outcomes: A user’s guide (3rd ed.). Rockville, MD: Agency for Healthcare Research and Quality (US).

27.

Cannon, C. (2018). Telehealth, mobile applications, and wearable devices are expanding cancer care beyond walls. Seminars in Oncology Nursing, 34(2), 118–125. https://doi.org/10.1016/j.soncn.2018.03.002.CrossRefPubMed

28.

Shapiro, M., Johnston, D., Wald, J., & Mon, D. (2012). Patient-generated health data: White paper prepared for the office of the national coordinator for health information technology. Research Triangle Park, NC: RTI International.

29.

Ashley, L., Jones, H., Velikova, G., & Wright, P. (2012). Cancer patients’ and clinicians’ opinions on the best time in secondary care to approach patients for recruitment to longitudinal questionnaire-based research. Supportive Care in Cancer, 20(12), 3365–3372. https://doi.org/10.1007/s00520-012-1518-4.CrossRefPubMed

30.

Beskow, L. M., Sandler, R. S., Millikan, R. C., & Weinberger, M. (2005). Patient perspectives on research recruitment through cancer registries. Cancer Causes and Control, 16(10), 1171–1175. https://doi.org/10.1007/s10552-005-0407-2.CrossRefPubMed

31.

Rea, L. M., & Parker, R. A. (1992). Designing and conducting survey research: A comprehensive guide. San Francisco, CA: Jossey-Bass Publishers.

32.

Krueger, R. A., & Casey, M. A. (2015). Focus groups: A practical guide for applied research (5th ed.). Thousand Oaks, CA: Sage.

33.

Aitken, M., de St Jorre, J., Pagliari, C., Jepson, R., & Cunningham-Burley, S. (2016). Public responses to the sharing and linkage of health data for research purposes: A systematic review and thematic synthesis of qualitative studies. BMC Medical Ethics, 17(1), 73. https://doi.org/10.1186/s12910-016-0153-x.CrossRefPubMedPubMedCentral

34.

Howe, N., Giles, E., Newbury-Birch, D., & McColl, E. (2018). Systematic review of participants’ attitudes towards data sharing: A thematic synthesis. Journal of Health Services Research & Policy, 23(2), 123–133. https://doi.org/10.1177/1355819617751555.CrossRef

35.

Shabani, M., Bezuidenhout, L., & Borry, P. (2014). Attitudes of research participants and the general public towards genomic data sharing: A systematic literature review. Expert Review of Molecular Diagnostics, 14(8), 1053–1065. https://doi.org/10.1586/14737159.2014.961917.CrossRefPubMed

36.

Spencer, K., Sanders, C., Whitley, E. A., Lund, D., Kaye, J., & Dixon, W. G. (2016). Patient perspectives on sharing anonymized personal health data using a digital system for dynamic consent and research feedback: A qualitative study. Journal of Medical Internet Research, 18(4), e66. https://doi.org/10.2196/jmir.5011.CrossRefPubMedPubMedCentral

37.

Fletcher, C., Flight, I., Chapman, J., Fennell, K., & Wilson, C. (2017). The information needs of adult cancer survivors across the cancer continuum: A scoping review. Patient Education and Counseling, 100(3), 383–410. https://doi.org/10.1016/j.pec.2016.10.008.CrossRefPubMed

38.

Gensheimer, S. G., Wu, A. W., & Snyder, C. F. (2018). Oh, the places we’ll go: Patient-reported outcomes and electronic health records. Patient, 11(6), 591–598. https://doi.org/10.1007/s40271-018-0321-9.CrossRefPubMed

39.

Gordon, L. G., Merollini, K. M. D., Lowe, A., & Chan, R. J. (2017). A systematic review of financial toxicity among cancer survivors: We can’t pay the co-pay. Patient, 10(3), 295–309. https://doi.org/10.1007/s40271-016-0204-x.CrossRefPubMed

40.

Zafar, S. Y., & Abernethy, A. P. (2013). Financial toxicity, Part I: A new name for a growing problem. Oncology, 27(2), 80–81, 149.

41.

Centers for Disease Control and Prevention. (2019). National program of cancer registries: State-specific cancer data access requirements for research. https://www.cdc.gov/cancer/npcr/data_access/. Accessed 2 January 2019.

42.

McLaughlin, R. H., Clarke, C. A., Crawley, L. M., & Glaser, S. L. (2010). Are cancer registries unconstitutional? Social Science and Medicine, 70(9), 1295–1300. https://doi.org/10.1016/j.socscimed.2010.01.032.CrossRefPubMed

43.

Basch, E., Abernethy, A. P., Mullins, C. D., Reeve, B. B., Smith, M. L., Coons, S. J., et al. (2012). Recommendations for incorporating patient-reported outcomes into clinical comparative effectiveness research in adult oncology. Journal of Clinical Oncology, 30(34), 4249–4255. https://doi.org/10.1200/jco.2012.42.5967.CrossRefPubMed

44.

Calvert, M., Kyte, D., Mercieca-Bebber, R., Slade, A., Chan, A. W., King, M. T., et al. (2018). Guidelines for inclusion of patient-reported outcomes in clinical trial protocols: The SPIRIT-PRO extension. JAMA, 319(5), 483–494. https://doi.org/10.1001/jama.2017.21903.CrossRefPubMed

45.

Reeve, B. B., Mitchell, S. A., Dueck, A. C., Basch, E., Cella, D., Reilly, C. M., et al. (2014). Recommended patient-reported core set of symptoms to measure in adult cancer treatment trials. Journal of the National Cancer Institute. https://doi.org/10.1093/jnci/dju129.CrossRefPubMedPubMedCentral

46.

Reeve, B. B., Wyrwich, K. W., Wu, A. W., Velikova, G., Terwee, C. B., Snyder, C. F., et al. (2013). ISOQOL recommends minimum standards for patient-reported outcome measures used in patient-centered outcomes and comparative effectiveness research. Quality of Life Research, 22(8), 1889–1905. https://doi.org/10.1007/s11136-012-0344-y.CrossRefPubMed

Title: Cancer survivor perspectives on sharing patient-generated health data with central cancer registries
Authors: T. G. Smith
M. E. Dunn
K. Y. Levin
S. P. Tsakraklides
S. A. Mitchell
L. V. van de Poll-Franse
K. C. Ward
C. L. Wiggins
X. C. Wu
M. Hurlbert
N. K. Aaronson
Publication date: 01-11-2019
Publisher: Springer International Publishing
Published in: Quality of Life Research / Issue 11/2019
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-019-02263-0

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

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

Abstract

Purpose

Methods

Results

Conclusions

At a glance: The ONWARDS insulin icodec trials

Springer Medicine

Abstract

Purpose

Methods

Results

Conclusions

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