Self-Care Behaviors of Ovarian Cancer Patients Before Their Diagnosis: Proof-of-Concept Study

Abstract

Background: Longer patient intervals can lead to more late-stage cancer diagnoses and higher mortality rates. Individuals may delay presenting to primary care with red flag symptoms and instead turn to the internet to seek information, purchase over-the-counter medication, and change their diet or exercise habits. With advancements in machine learning, there is the potential to explore this complex relationship between a patient's symptom appraisal and their first consultation at primary care through linkage of existing datasets (eg, health, commercial, and online).

Objective: Here, we aimed to explore feasibility and acceptability of symptom appraisal using commercial- and health-data linkages for cancer symptom surveillance.

Methods: A proof-of-concept study was developed to assess the general public's acceptability of commercial- and health-data linkages for cancer symptom surveillance using a qualitative focus group study. We also investigated self-care behaviors of ovarian cancer patients using high-street retailer data, pre- and postdiagnosis.

Results: Using a high-street retailer's data, 1118 purchases-from April 2013 to July 2017-by 11 ovarian cancer patients and one healthy individual were analyzed. There was a unique presence of purchases for pain and indigestion medication prior to cancer diagnosis, which could signal disease in a larger sample. Qualitative findings suggest that the public are willing to consent to commercial- and health-data linkages as long as their data are safeguarded and users of this data are transparent about their purposes.

Conclusions: Cancer symptom surveillance using commercial data is feasible and was found to be acceptable. To test efficacy of cancer surveillance using commercial data, larger studies are needed with links to individual electronic health records.

Keywords: acceptability; cancer; cancer surveillance; data linkage; early diagnosis; focus group; proof of concept.

Conflict of interest statement

Conflicts of Interest: None declared.

©James M Flanagan, Hanna Skrobanski, Xin Shi, Yasemin Hirst. Originally published in JMIR Cancer (http://cancer.jmir.org), 17.01.2019.

Figures

Figure 1

Overall purchase proportions. For each month between April 2013 and July 2017, the total purchases for each category were summed and divided by the number of all purchases in that month for the ovarian cancer patients (blue line), compared with the average monthly purchase proportion for that category for the healthy control subject (red dotted line). A. Purchases of pain and indigestion medication. B. Purchases of hair care products.

Figure 2

Pain and indigestion medication purchases stratified into pre- and postdiagnosis. Average monthly purchase proportions for ovarian cancer patients (blue line) were compared with those of the healthy control subject (red dotted line). A. Purchases for the pain and indigestion medication category during the prediagnostic period. B. Purchases for the pain and indigestion medication category during the postdiagnostic period.