JMIR Publications

ABSTRACT

The collection and use of patient health data is central to any kind of activity in the healthcare system. This data may be produced during routine clinical processes or obtained directly from the patient using patient-reported outcome (PRO) measures. Although efficiency and other reasons justify data availability for a range of potential relevant uses, these data are nearly always collected for a single specific purpose. The healthcare data literature reflects this narrow scope, and there is limited literature on the joint use of health data for daily clinical use, clinical research, surveillance and administrative purposes. The aim of this paper is to provide a framework for a discussion of the efficient use of health data with specific focus on the role of PRO measures. PRO data may be used: i) at an individual patient level to inform patient care or shared-decision making and tailor care to individual needs or ii) at group level as a complement to health record data e.g. on mortality and readmission to inform service delivery and measure real-world effectiveness of treatment. PRO may be used either for their own sake, to provide valuable information from the patient perspective, or as proxy for clinical data that would be otherwise not feasible to collect. We introduce a framework to analyse any health care activity that involves health data. The framework consists of four data processes (patient identification, data collection, data aggregation and data use), further structured into two dichotomous dimensions in each data process (level: group vs patient; and timeframe: ad hoc vs systematic). This framework is used to analyse various health activities with respect to joint use of data considering the technical, legal, organisational and logistical challenges that characterize each data process. Finally, we propose a model for joint use of health data with data collected during follow-up as basis. Demands for health data will continue to increase which will further add to the need for the concerted use and reuse of PRO data for parallel purposes. Repeated and uncoordinated PRO data collection for the same patient for different purposes results in misuse of resources for the healthcare system as well as reduced response rates owing to questionnaire fatigue. PRO data can be routinely collected both at the hospital (in- as well as outpatients) and outside of hospital settings, in primary or social care settings, or in the patient’s home provided the health informatics infrastructure is in place. In the future, clinical settings are likely to be a prominent source of PRO data; however we are also likely to see increased remote collection of PRO data by patients in their own home (telePRO). Data collection for research and quality surveillance will have to adapt to this circumstance and adopt complementary data capture methods which take advantage of the utility of PRO data collected during daily clinical practice. The European Union’s regulation with respect to the protection of personal data, General Data Protection Regulation, imposes severe restrictions on use of health data for parallel purposes and steps should be taken to alleviate the consequences while still protecting personal data against misuse.