Abstract
BackgroundSince 2004, we have collected patient-reported outcome (PRO) data from several Danish patient populations for use at the group and patient levels.ObjectiveThe aim of this paper is to highlight trends during the last 15 years with respect to patient inclusion, the methods for collection of PRO data, the processing of the data, and the actual applications and use of the PRO measurements.MethodsAll PRO data have been collected using the AmbuFlex/WestChronic PRO system, which was developed by the author in 2004 and has been continuously updated since. The analysis of trends was based on a generic model applicable for any kind of clinical health data, according to which any application of clinical data may be divided into four processes: patient identification, data collection, data aggregation, and the actual data use. Data for analysis were generated by a specific application in the system and transferred for analysis to the R package.ResultsDuring the 15-year period, 78,980 patients within 28 different groups of chronic and malignant illnesses have answered 260,433 questionnaires containing a total of 13,538,760 responses. Several marked changes have taken place: (1) the creation of cohorts for clinical epidemiological research purposes has shifted towards cohorts defined by clinical use of PRO data at the patient level; (2) the development of AmbuFlex, where PRO data are used as the entire basis for outpatient follow-up instead of fixed appointments, has undergone exponential growth and the system is currently in use in 47 International Statistical Classification of Diseases and Related Health Problems groups, covering 16,000 patients and 94 departments throughout Denmark; (3) response rates (up to 92%) and low attrition rates have been reached in group level projects, and there are even higher response rates in AmbuFlex where the patients are individually referred; (4) The answering method has shifted, as while in 2005 a total of 66.5% of questionnaires were paper based, this is the case for only 4.3% in 2019; and (5) the approach methods for questionnaires and reminders have changed dramatically from letter, emails, and short message service text messaging to a national, secure electronic mail system through which 93.2% of the communication to patients took place in 2019. The combination of secure email and web-based answering has resulted in a low turnaround time in which half of responses are now received within 5 days.ConclusionsThe demand for clinical use of PRO measurements has increased, driven by a wish among patients as well as clinicians to use PRO to promote better symptom assessment, more patient-centered care, and more efficient use of resources. Important technological changes have occurred, creating new opportunities, and making PRO collection and use cheaper and more feasible. Several legal changes may constitute a barrier for further development as well as a barrier for better utilization of patients’ questionnaire data. The current legal restrictions on the joint use of health data imposed by the European Union’s General Data Protection Regulation makes no distinction between use and misuse, and steps should be taken to alleviate these restrictions on the joint use of PRO data.
Highlights
From the time of Hippocrates, information originating from the patient has been considered indispensable
Several legal changes may constitute a barrier for further development as well as a barrier for better utilization of patients’ questionnaire data
In the first cohort studies, emphasis was on response rate, which was promoted by up to three reminders using email and letters and by giving the patient a free choice between Web and paper questionnaires
Summary
From the time of Hippocrates, information originating from the patient has been considered indispensable. Few diagnoses can be established, and few treatments monitored sufficiently, solely by using paraclinical data without explicit information from the patient. Until recently, such patient inputs were always shortened and interpreted by a clinician. Since 2004, we have collected PRO data ( the term PRO data was not coined at that time) from several Danish patient populations. The aim of this paper is to highlight trends during the last 15 years with respect to patient inclusion, the collection of PRO data, the processing of the data, and the actual applications and use of the PRO measurements. Since 2004, we have collected patient-reported outcome (PRO) data from several Danish patient populations for use at the group and patient levels
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