Abstract:

The promise of data-informed innovation in oncology depends on the patients’ willingness to share their personal health data for a wide range of analytical purposes, including secondary uses. Little is known about the factors that influence attitudes of cancer patients to personal health data sharing in underperforming healthcare settings such as Poland.

This paper addresses this gap by reporting the results of a survey exploring the attitudes to PHD (personal health data) sharing among Polish oncological patients and the conditions under which they would be willing to do so.

The study is based on a mixed-method design. Two workshops (held in February and June 2020) on data-driven policy in oncology involving key opinion leaders in Polish oncology revealed social attitudes to data sharing as the main obstacle to implementing a wider data-driven approach to health policy in Poland. To explore this issue, an internet-based questionnaire was constructed and distributed among adult Polish oncological patients and patients’ caregivers. The questionnaire comprised questions related to the willingness to share data, satisfaction with information delivered by healthcare professionals, incentives and concerns related to data sharing, patients’ overall trust in the healthcare system, and patients’ trust in the medical care they were going to receive.

Patient acceptance of data sharing is critical to wider implementation of data-driven policies. Understanding of patients’ views on the sharing of health information, and in particular the patients’ concerns regarding the safety and privacy of data sharing is a pre-requisite to the effective design of policies that serve the public trust.