Cancer Patient Perspectives on Sharing of Medical Records and Mobile Device Data for Research Purposes

Abstract

Sharing data is critical to advancing science, improving health, and creating advances in the delivery of health care services. The value of sharing data for cancer research purposes is well established, and there are multiple initiatives under way that address this need. However, there has been less focus on cancer patient perspectives regarding the sharing of their health information for research purposes. This study examined cancer patient perspectives on the sharing of de-identified health data for research purposes including both data from medical records and mobile applications. This cross-sectional study used survey methodology to collect data from cancer patients/survivors (N = 677). Overall, we found that participants were largely willing (71%) to share de-identified medical data and were most motivated (88%) by a desire to help other cancer patients. Patients were less likely to be comfortable sharing mobile application data (34%). It is vital that we understand patient perspectives on data sharing and work with them as partners, valuing their unique contributions, and attending to their preferences.

A Canadian Prospective Study of Linkage of Randomized Clinical Trial to Cancer and Mortality Registry Data

“…Among 151 individuals who completed a survey conducted by Arthritis Research Canada and the Canadian Skin Patient Alliance, 93.4% felt positively about the use of routinely collected data for health research; de-identification of personal information was the top privacy measure and over half wanted to learn more [ 5 ]. In the US, a survey of 677 cancer patients and survivors found that 71% were willing to share de-identified medical data for research purposes; most were motivated by a desire to help other cancer patients [ 6 ].…”

Public Attitudes Towards Sharing Loyalty Card Data for Academic Health Research: a Qualitative Study

“…Participants were mostly divided in regard to who should share the data (e.g., retailers vs themselves), who should remove any data they do not want shared, and whether data sharing would take place retrospectively or prospectively. Most participants said they would be happy to donate their data for any form of health research, but half still said they would wish to choose which type of health research their data are used for, which is re ective of previous research [20,24]. Regardless of preference, participants expressed that convenience was paramount and data sharing should be quick and easy.…”

“…Previous studies have focused on mobile phone and app data [18,19,20,21], emphasising the need to specify the data type being shared when gathering public opinion. For example, location data were often viewed as more sensitive than other types of information [18,19,20,21]. Further, Jones et al [12] explored public attitudes towards using mobile phone call records for health research and found participants had concerns that their data could be misused and even sold to employers or insurers.…”

“…Previous studies do suggest that a difference in the public's willingness to share other types of digital footprint data is dependent on the health condition being investigated. Franklin et al [20], from a survey of cancer patients, found that 34% of participants were willing to share mobile application data for health research, whereas willingness to share mobile application data in order to address mental health rose to 68% [18]. In another study, individuals were interviewed both before and after the COVID-19 pandemic started in 2020, nding that 77% of those who were previously not willing to share their digital data for use in public health had changed their mind, additionally stating that they also intended to download a COVID-19 speci c contact tracking app [25].…”

“…Studies into the public acceptability of sharing data for health research, and further linking this data with health outcomes and other health-relevant data, have established that whether or not data were used on its own or linked to other datasets, the public expects safeguards to be in place to ensure appropriate data security, and desired levels of anonymisation of their data in order to address fears about privacy [11,15,16,17]. Context of the use case and the speci c data type is key in determining an individual's willingness to share personal digital data [11,18,19,20,21]. Previous studies have focused on mobile phone and app data [18,19,20,21], emphasising the need to specify the data type being shared when gathering public opinion.…”