TY - JOUR

T1 - Self-Care Behaviors of Ovarian Cancer Patients Before Their Diagnosis

T2 - Proof-of-Concept Study

AU - Flanagan, James M

AU - Skrobanski, Hanna

AU - Shi, Xin

AU - Hirst, Yasemin

N1 - ©James M Flanagan, Hanna Skrobanski, Xin Shi, Yasemin Hirst. Originally published in JMIR Cancer (http://cancer.jmir.org), 17.01.2019.

PY - 2019/1/17

Y1 - 2019/1/17

N2 - 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.

AB - 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.

KW - Acceptability

KW - Cancer

KW - Cancer surveillance

KW - Data linkage

KW - Early diagnosis

KW - Focus group

KW - Proof of concept

U2 - 10.2196/10447

DO - 10.2196/10447

M3 - Journal article

C2 - 30664464

VL - 5

JO - JMIR cancer

JF - JMIR cancer

SN - 2369-1999

IS - 1

M1 - e10447

ER -