Health Data Processes: A Framework for Analyzing and Discussing Efficient Use and Reuse of Health Data With a Focus on Patient-Reported Outcome Measures

Research output: Contribution to journal/Conference contribution in journal/Contribution to newspaperJournal articleResearchpeer-review

DOI

  • Niels Henrik Ingvar Hjollund
  • José Maria Valderas, University of Exeter Collaboration for Academic Primary Care, Health Services & Policy Research Group, National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care (South West Peninsula), University of Exeter, Exeter, United Kingdom.
  • ,
  • Derek Kyte, National Institute for Health Research Birmingham Biomedical Research Centre and National Institute for Health Research Surgical Reconstruction and Microbiology Research Centre, University of Birmingham, Edgbaston, Birmingham, United Kingdom.
  • ,
  • Melanie Jane Calvert, National Institute for Health Research Birmingham Biomedical Research Centre and National Institute for Health Research Surgical Reconstruction and Microbiology Research Centre, University of Birmingham, Edgbaston, Birmingham, United Kingdom.

The collection and use of patient health data are central to any kind of activity in the health care system. These 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 potentially relevant uses, these data are nearly always collected for a single specific purpose. The health care 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 discussing the efficient use of health data with a specific focus on the role of PRO measures. PRO data may be used at an individual patient level to inform patient care or shared decision making and to tailor care to individual needs or group-level needs as a complement to health record data, such as that on mortality and readmission, in order to inform service delivery and measure the real-world effectiveness of treatment. PRO measures may be used either for their own sake, to provide valuable information from the patient perspective, or as a proxy for clinical data that would otherwise not be feasible to collect. We introduce a framework to analyze 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; timeframe: ad hoc vs systematic). This framework is used to analyze various health activities with respect to joint use of data, considering the technical, legal, organizational, 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 a base. 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 patient and the health care system as well as reduced response rates owing to questionnaire fatigue. PRO data can be routinely collected both at the hospital (from inpatients 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 that 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 the use of health data for parallel purposes, and steps should be taken to alleviate the consequences while still protecting personal data against misuse.

Original languageEnglish
JournalJournal of Medical Internet Research
Volume21
Issue5
Pages (from-to)e12412
ISSN1439-4456
DOIs
Publication statusPublished - 21 May 2019
Externally publishedYes

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