ArticleJournal of cancer survivorship : research and practice2021
Feasibility of collecting patient-generated health data to enhance cancer registry surveillance.
Article in Journal of cancer survivorship : research and practice, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
4 citing papers in PubMed, 5 citations in OpenAlex.
- Providing Decision Support for Prostate Cancer Through Cancer Registry Contacts.Journal of registry management · 2026Article
- Best Practices for Data Modernization Across the United States Public Health System: Scoping Review.Journal of medical Internet research · 2025Article
- Recruitment of sexual minority and heterosexual colorectal cancer survivors through US cancer registries.Journal of cancer survivorship : research and practice · 2024Article
- Mobile Health Apps for Breast Cancer: Content Analysis and Quality Assessment.JMIR mHealth and uHealth · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 4 institutions in 1 country.
Funding
Abstract
purposePatient-generated health data (PGHD) can provide information about population-level patterns in health outcomes that patients experience during cancer survivorship. Cancer registries do not collect PGHD as part of routine operations. This study assessed the feasibility of online collection of PGHD to augment cancer registry data.
methodsCancer survivors who (1) were aged 50 or older, (2) had been diagnosed with breast, prostate, or colorectal cancer, and (3) received their diagnosis within 10 years of the study start date were recruited at four Surveillance, Epidemiology, and End Results (SEER) cancer registry program sites. Each site was required to collect PGHD at baseline and a future time point to assess the feasibility of longitudinal methods. All sites collected data through a survey or questionnaire(s); each site employed unique methods to administer their surveys.
resultsAcross the sites, initial recruitment appeared to be the most challenging aspect in establishing a longitudinal cohort from the SEER sampling frame, with participation rates ranging from 3 to 17%. However, once enrolled, the percentage of survivors completing surveys at multiple time points was relatively high, ranging from 48 to 91%.
conclusionAugmenting cancer registry data with longitudinally collected PGHD is feasible, although more work is needed to overcome barriers of initial patient recruitment and adoption of online PGHD collection techniques for public health surveillance. IMPLICATIONS FOR CANCER SURVIVORS: Registry data, including PGHD, can provide the medical community with patient perspectives on treatment effects and quality of life and can offer cancer survivors information about symptom management and advances in research.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.