A landscape assessment of the use of patient reported outcome measures in research, quality improvement and clinical care across a healthcare organisation

Abstract

Background Patient reported outcome measures (PROMs) can be used by healthcare organisations to inform improvements in service delivery. However, routine collection of PROMs is difficult to achieve across an entire healthcare organisation. An understanding of the use of PROMs within an organisation can provide valuable insights on the purpose, scope and practical considerations of PROMs collection, which can inform implementation of PROMs. Methods We used multiple research methods to assess the use of PROMs in research projects, data registries and clinical care across a healthcare organisation from January 2014 to April 2021. The methods included an audit of ethics applications approved by the organisation’s human research ethics committee and registries which the health organisation had contributed data to; a literature review of peer-reviewed journal articles reporting on research projects conducted at the organisation; and a survey of health professionals use of PROMs in research projects, data registries and clinical care. The scope of PROMs was determined by classifying PROMs as either ‘specific’ to a particular disease and/or condition, or as a ‘generic’ measure with further classification based on the health domains they measured, using the World Health Organization International Classification Framework. Practical considerations included mode and timing of PROMs administration. Data were described using frequency and proportion. Results PROMs were used by 22% of research projects (n = 144/666), 68% of data registries (n = 13/19), and 76% of clinical specialties in their clinical care (n = 16/21). Disease specific PROMs were most commonly used: 83% of research projects (n = 130/144), 69% of clinical registries (n = 9/13), and 75% of clinical specialties (n = 12/16). Greater than 80% of research projects, clinical registries and clinical specialties measured health domains relating to both body impairments and participation in daily life activities. The most commonly used generic PROM was the EQ-5D (research projects n = 56/144, 39%; data registries n = 5/13, 38%; clinical specialties n = 4/16, 25%). PROMs used in clinical care were mostly paper-based (n = 47/55, 85%). Conclusions We have elicited information on the use of PROMs to inform a health organisation wide implementation strategy. Future work will determine clinician and patient acceptability of the EQ-5D, and co-design a system for the collection of PROMs.

Development and Integration of Patient-Reported Measures into E-Health System: Pilot Feasibility Study

“…Benchmarking is a valuable approach that can be used to optimize patient journey and improve healthcare provision strategies [ 35 , 36 ]. However, there are only a few examples for the use of patient-reported measures by the stakeholders for these aims [ 39 ]. We managed to capture and identify specific elements of the patient journey as potential objects for improvement at the national healthcare system.…”

“…The digital approach to collecting patient-reported measures and integrating them into the E-systems is still an innovative form of patient engagement. A recent large meta-analysis of patient-reported outcome measures implementation in research and clinical use revealed that, in most of the cases, paper forms were still used with only a very small part collected purely electronically or combining both methods [ 39 ]. Age-related digital illiteracy and, in some cases, access to the Internet, had been highlighted by the studies [ 40 ].…”

Developing a linked electronic health record derived data platform to support research into healthy ageing

“…Relevant to consumer involvement is the incorporation of a related program of work, implementing routine collection of Patient Reported Outcome Measures (PROMS) into Peninsula Health for incorporation into the Healthy Ageing Data Platform [ 15 ]. This activity will ensure that data obtained from consumer, and not just clinician perspectives are available within the Platform.…”

Clinical Impact of Routine Assessment of Patient-Reported Health Status in Heart Failure Clinic: The PRO-HF Trial

“…Results of the PRO-HF Trial research, 5 there is growing interest about incorporating them in routine clinical care. 2,[6][7][8][9][10] To that extent, multiple organizations, including the American Heart Association and the Centers for Medicare and Medicaid Services, have introduced quality measures promoting routine PRO assessment in clinical care, including for patients with heart failure (HF). [11][12][13] The HF community has shown increasing interest in incorporating PROs into clinical care.…”