Emerging uses of patient generated health data in clinical research
Open accessAbstract
Recent advancements in consumer directed personal computing technology have led to the generation of biomedically‐relevant data streams with potential health applications. This has catalyzed international interest in Patient Generated Health Data (PGHD), defined as “health‐related data – including health history, symptoms, biometric data, treatment history, lifestyle choices, and other information‐created, recorded, gathered, or inferred by or from patients or their designees (i.e. care partners or those who assist them) to help address a health concern.”(Shapiro et al., 2012) PGHD offers several opportunities to improve the efficiency and output of clinical trials, particularly within oncology. These range from using PGHD to understand mechanisms of action of therapeutic strategies, to understanding and predicting treatment‐related toxicity, to designing interventions to improve adherence and clinical outcomes. To facilitate the optimal use of PGHD, methodological research around considerations related to feasibility, validation, measure selection, and modeling of PGHD streams is needed. With successful integration, PGHD can catalyze the application of “big data” to cancer clinical research, creating both “n of 1” and population‐level observations, and generating new insights into the nature of health and disease.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
Cites
Personal omics profiling reveals dynamic molecular and medical phenotypes
Chen, R., Mias, G. I., Li-Pook-Than, J., Jiang, L., Lam, H. Y. K., Chen, R., Miriami, E., Karczewski, K. J., Hariharan, M., Dewey, F. E., et al. (2012) · Cell · doi:10.1016/j.cell.2012.02.009 · Cited by 1,291 · see citing works
Moneyball: the art of winning an unfair game
(2004) · Choice Reviews Online · doi:10.5860/choice.41-4733 · Cited by 782 · see citing works
Managing Cytokine Release Syndrome Associated With Novel T Cell-Engaging Therapies
Maude, S. L., Barrett, D. M., Teachey, D. T., & Grupp, S. A. (2014) · The Cancer Journal · doi:10.1097/ppo.0000000000000035 · Cited by 753 · see citing works
Cost Sharing and Adherence to Tyrosine Kinase Inhibitors for Patients With Chronic Myeloid Leukemia
Dusetzina, S. B., Winn, A. N., Abel, G. A., Huskamp, H. A., & Keating, N. L. (2013) · Journal of Clinical Oncology · doi:10.1200/jco.2013.52.9123 · Cited by 501 · see citing works
24. How Companies Learn Your Secrets
Duhigg, C. (2013) · Columbia University Press eBooks · doi:10.7312/star16075-025 · Cited by 362 · see citing works
Scoggins, J. F., & Ramsey, S. D. (2010) · JNCI Journal of the National Cancer Institute · doi:10.1093/jnci/djq291 · Cited by 321 · see citing works
Quality of life after allogeneic hematopoietic cell transplantation
Pidala, J., Anasetti, C., & Jim, H. (2009) · Blood · doi:10.1182/blood-2008-10-182592 · Cited by 316 · see citing works
Ibrahim, A. R., Eliasson, L., Apperley, J. F., Milojković, D., Bua, M., Szydlo, R., Mahon, F., Kozlowski, K., Paliompeis, C., Foroni, L., et al. (2011) · Blood · doi:10.1182/blood-2010-10-309807 · Cited by 315 · see citing works
Patient Online Self-Reporting of Toxicity Symptoms During Chemotherapy
Basch, E., Artz, D. R., Dulko, D., Scher, K. S., Sabbatini, P. J., Hensley, M. L., Mitra, N., Speakman, J., McCabe, M. S., & Schrag, D. (2005) · Journal of Clinical Oncology · doi:10.1200/jco.2005.04.275 · Cited by 308 · see citing works
Self-citationQuinten, C., Martinelli, F., Coens, C., Sprangers, M. A. G., Ringash, J. G., Gotay, C. C., Bjordal, K., Greimel, E., Reeve, B. B., Maringwa, J. T., et al. (2013) · Cancer · doi:10.1002/cncr.28382 · Cited by 206 · see citing works
Vitolo, U., Chiappella, A., Franceschetti, S., Carella, A. M., Baldi, I., Inghirami, G., Spina, M., Pavone, V., Ladetto, M., Liberati, A. M., et al. (2014) · The Lancet Oncology · doi:10.1016/s1470-2045(14)70191-3 · Cited by 184 · see citing works
Toxicity of targeted therapy: Implications for response and impact of genetic polymorphisms
Liu, S., & Kurzrock, R. (2014) · Cancer Treatment Reviews · doi:10.1016/j.ctrv.2014.05.003 · Cited by 158 · see citing works
Judson, T. J., Bennett, A. V., Rogak, L. J., Sit, L., Leahy, A. B., Kris, M. G., Hudis, C. A., Scher, H. I., Sabbatini, P. J., Schrag, D., et al. (2013) · Journal of Clinical Oncology · doi:10.1200/jco.2012.47.6804 · Cited by 149 · see citing works
Self-citationMalignant hematologic diseases in adolescents and young adults
Wood, W. A., & Lee, S. J. (2011) · Blood · doi:10.1182/blood-2010-12-283093 · Cited by 119 · see citing works
Self-citationWho is fit for allogeneic transplantation?
Deeg, H. J., & Sandmaier, B. M. (2010) · Blood · doi:10.1182/blood-2010-07-259358 · Cited by 107 · see citing works
Demystifying Disease, Democratizing Health Care
Hood, L., & Price, N. D. (2014) · Science Translational Medicine · doi:10.1126/scitranslmed.3008665 · Cited by 106 · see citing works
Palmer, J. M., Williams, K. M., Inamoto, Y., Chai, X., Martin, P. J., Tomas, L. H. S., Cutler, C. S., Weisdorf, D. J., Kurland, B. F., Carpenter, P. A., et al. (2013) · Transplantation and Cellular Therapy · doi:10.1016/j.bbmt.2013.11.025 · Cited by 91 · see citing works
Self-citationCardiopulmonary fitness in patients undergoing hematopoietic SCT: a pilot study
Wood, W. A., Deal, A. M., Reeve, B. B., Abernethy, A. P., Basch, E., Mitchell, S. A., Shatten, C., Kim, Y. H., Whitley, J., Serody, J. S., et al. (2013) · Bone Marrow Transplantation · doi:10.1038/bmt.2013.58 · Cited by 89 · see citing works
Self-citationDetermining Chemotherapy Tolerance in Older Patients With Cancer
Kim, J. H., & Hurria, A. (2013) · Journal of the National Comprehensive Cancer Network · doi:10.6004/jnccn.2013.0176 · Cited by 63 · see citing works
Jim, H., Evans, B., Jeong, J. M., Gonzalez, B. D., Johnston, L., Nelson, A. M., Kesler, S. R., Phillips, K. M., Barata, A., Pidala, J., et al. (2014) · Transplantation and Cellular Therapy · doi:10.1016/j.bbmt.2014.04.010 · Cited by 55 · see citing works
Wood, W. A., Deal, A. M., Abernethy, A. P., Basch, E., Battaglini, C. L., Kim, Y. H., Whitley, J., Shatten, C., Serody, J. S., Shea, T. C., et al. (2012) · Transplantation and Cellular Therapy · doi:10.1016/j.bbmt.2012.11.014 · Cited by 49 · see citing works
Self-citationBevans, M. F., Mitchell, S., Barrett, J., Bishop, M., Childs, R., Fowler, D., Krumlauf, M., Prince, P., Shelburne, N., Wehrlen, L., et al. (2013) · Biology of Blood and Marrow Transplantation · doi:10.1016/j.bbmt.2013.12.001 · Cited by 46 · see citing works
The Rationale for Collecting Patient-Reported Symptoms during Routine Chemotherapy
Basch, E. (2014) · American Society of Clinical Oncology Educational Book · doi:10.14694/edbook_am.2014.34.161 · Cited by 37 · see citing works
Self-citationJohnston, N. W., Lambert, K., Hussack, P., de Verdier, M. G., Higenbottam, T., Lewis, J., Newbold, P., Jenkins, M. A., Norman, G. R., Coyle, P. V., et al. (2013) · CHEST Journal · doi:10.1378/chest.12-2308 · Cited by 35 · see citing works
Wood, W. A., Abernethy, A. P., & Giralt, S. (2011) · Transplantation and Cellular Therapy · doi:10.1016/j.bbmt.2011.10.014 · Cited by 5 · see citing works
Self-citation
Flagged first, then by citations
Cited by
Sorted by citations
Grigorovich, A., Kulandaivelu, Y., Newman, K., Bianchi, A., Khan, S. S., Iaboni, A., & McMurray, J. (2021) · Journal of Medical Internet Research · doi:10.2196/22831 · Cited by 33 · see citing works
Amed, S., Pinkney, S., Abdulhussein, F. S., Virani, A., Zachariuk, C., Tamana, S. K., Muralidharan, S., Görges, M., Barrett, B., van Rooij, T., et al. (2025) · PLOS Digital Health · doi:10.1371/journal.pdig.0000861 · Cited by 1 · see citing works
“Increased use of wearable devices, such as Continuous Glucose Monitoring (CGM) systems and insulin pumps enabled the collection of vast amounts of Patient-Generated Health Data (PGHD) that can inform clinical care [6,7].”
- Authors
- Wood, W. A., Bennett, A. V., & Basch, E.
- Affiliations
- University of North Carolina at Chapel Hill (US)
- Corresponding author
- Wood, William A.
- Venue
- Molecular Oncology
- Publisher
- Wiley
- Published
- 2014-08-27
- Volume
- 9
- Issue
- 5
- Pages
- 1018-1024
- ISSN
- 1574-7891 (ISSN-L)
- 1878-0261
- PMC
- PMC5528746
- OpenAlex
- W2056134801
- Cited by
- 90
- References
- 25
- Citations by year
- 2026: 4 · 2025: 4 · 2024: 4 · 2023: 6 · 2022: 10 · 2021: 8 · 2020: 13 · 2019: 14 · 2018: 9 · 2017: 11 · 2016: 2 · 2015: 4 · 2014: 1
- FWCI
- 1.02
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Molecular Oncology (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Carolina Digital Repository (University of North Carolina at Chapel Hill) (submittedVersion)
- UNC Libraries
- Topics
- Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
- Keywords
- patient-generated health data, clinical research, cancer clinical trials, big data, treatment toxicity, medication adherence, mechanism of action, data validation, N-of-1 studies, population data
- MeSH terms
- Clinical Trials as Topic, Humans, Electronic Health Records
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
