13 research outputs found
Health data processes. A framework for analysing and discussing efficient use and reuse of health data with focus on Patient Reported Outcome (PRO) measures
This is is the final version. Available from Journal of Medical Internet Research via the DOI in this record.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.National Institute for Health Research (NIHR