RESUMO
BACKGROUND: Shopping data can be analyzed using machine learning techniques to study population health. It is unknown if the use of such methods can successfully investigate prediagnosis purchases linked to self-medication of symptoms of ovarian cancer. OBJECTIVE: The aims of this study were to gain new domain knowledge from women's experiences, understand how women's shopping behavior relates to their pathway to the diagnosis of ovarian cancer, and inform research on computational analysis of shopping data for population health. METHODS: A web-based survey on individuals' shopping patterns prior to an ovarian cancer diagnosis was analyzed to identify key knowledge about health care purchases. Logistic regression and random forest models were employed to statistically examine how products linked to potential symptoms related to presentation to health care and timing of diagnosis. RESULTS: Of the 101 women surveyed with ovarian cancer, 58.4% (59/101) bought nonprescription health care products for up to more than a year prior to diagnosis, including pain relief and abdominal products. General practitioner advice was the primary reason for the purchases (23/59, 39%), with 51% (30/59) occurring due to a participant's doctor believing their health problems were due to a condition other than ovarian cancer. Associations were shown between purchases made because a participant's doctor believing their health problems were due to a condition other than ovarian cancer and the following variables: health problems for longer than a year prior to diagnosis (odds ratio [OR] 7.33, 95% CI 1.58-33.97), buying health care products for more than 6 months to a year (OR 3.82, 95% CI 1.04-13.98) or for more than a year (OR 7.64, 95% CI 1.38-42.33), and the number of health care product types purchased (OR 1.54, 95% CI 1.13-2.11). Purchasing patterns are shown to be potentially predictive of a participant's doctor thinking their health problems were due to some condition other than ovarian cancer, with nested cross-validation of random forest classification models achieving an overall in-sample accuracy score of 89.1% and an out-of-sample score of 70.1%. CONCLUSIONS: Women in the survey were 7 times more likely to have had a duration of more than a year of health problems prior to a diagnosis of ovarian cancer if they were self-medicating based on advice from a doctor rather than having made the decision to self-medicate independently. Predictive modelling indicates that women in such situations, who are self-medicating because their doctor believes their health problems may be due to a condition other than ovarian cancer, exhibit distinct shopping behaviors that may be identifiable within purchasing data. Through exploratory research combining women sharing their behaviors prior to diagnosis and computational analysis of these data, this study demonstrates that women's shopping data could potentially be useful for early ovarian cancer detection.
RESUMO
BACKGROUND: A growing number of studies show the potential of loyalty card data for use in health research. However, research into public perceptions of using this data is limited. This study aimed to investigate public attitudes towards donating loyalty card data for academic health research, and the safeguards the public would want to see implemented. The way in which participant attitudes varied according to whether loyalty card data would be used for either cancer or COVID-19 research was also examined. METHODS: Participants (N = 40) were recruited via Prolific Academic to take part in semi-structured telephone interviews, with questions focused on data sharing related to either COVID-19 or ovarian/bowel cancer as the proposed health condition to be researched. Content analysis was used to identify sub-themes corresponding to the two a priori themes, attitudes and safeguards. RESULTS: Participant attitudes were found to fall into two categories, either rational or emotional. Under rational, most participants were in favour of sharing loyalty card data. Support of health research was seen as an important reason to donate such data, with loyalty card logs being considered as already within the public domain. With increased understanding of research purpose, participants expressed higher willingness to donate data. Within the emotional category, participants shared fears about revealing location information and of third parties obtaining their data. With regards to safeguards, participants described the importance of anonymisation and the level of data detail; the control, convenience and choice they desired in sharing data; and the need for transparency and data security. The change in hypothetical purpose of the data sharing, from Covid-19 to cancer research, had no impact on participants' decision to donate, although did affect their understanding of how loyalty card data could be used. CONCLUSIONS: Based on interviews with the public, this study contributes recommendations for those researchers and the wider policy community seeking to obtain loyalty card data for health research. Whilst participants were largely in favour of donating loyalty card data for academic health research, information, choice and appropriate safeguards are all exposed as prerequisites upon which decisions are made.