Healthcare consumer acceptability of routine use of the EQ-5D-5L in clinical care: a cross-sectional survey.

PURPOSE: Patient reported outcome measures, such as the EQ-5D-5L, provide a measure of self-perceived health status or health-related quality of life. Understanding the consumer acceptability of a patient reported outcome measure can help to decide about its implementation across a healthcare organisation and possibly increase the likelihood of its use in clinical care. This study established the acceptability of the EQ-5D-5L from the perspective of clients receiving healthcare, and determined if acceptability varied by client sub-types. METHODS: A cross-sectional survey explored clients' experience of the EQ-5D-5L. Eligible clients were aged ≥ 18 years and completed the EQ-5D-5L on admission and discharge to one of two multi-disciplinary community health services. Likert scale items explored acceptability, and open-ended questions determined if the EQ-5D-5L reflects experience of illness. Associations between acceptability and client characteristics were established using χ2 test. Open-ended questions were analysed using content analysis. RESULTS: Most of the 304 clients (mean age 70 years, SD 16) agreed that the EQ-5D-5L: was easy to use/understand (n = 301, 99%) and useful (n = 289, 95%); improved communication with their therapist (n = 275, 90%); and made them feel more in control of their health (n = 276, 91%). Most clients also agreed that they wished to continue using the EQ-5D-5L (n = 285, 93%). Clients aged ≥ 60 years reported lower acceptability. Clients noted that the EQ-5D-5L did not capture experience of illness related to fatigue, balance/falls, cognition, and sleep. CONCLUSION: The EQ-5D-5L is acceptable for use in care but does not capture all aspects of health relevant to clients, and acceptability varies by subgroup.

Using a multi-stakeholder co-design process to develop a health service organisation-wide patient reported outcome measure collection system.

PURPOSE: Limited examples exist of successful Patient Reported Outcome Measure (PROM) implementation across an entire healthcare organisation. The aim of this study was to use a multi-stakeholder co-design process to develop a PROM collection system, which will inform implementation of routine collection of PROMs across an entire healthcare organisation. METHODS: Co-design comprised semi-structured interviews with clinicians (n = 11) and workshops/surveys with consumers (n = 320). The interview guide with clinicians focused on their experience using PROMs, preferences for using PROMs, and facilitators/barriers to using PROMs. Co-design activities specific to consumers focused on: (1) how PROMs will be administered (mode), (2) when PROMs will be administered (timing), (3) who will assist with PROMs collection, and (4) how long a PROM will take to complete. Data were analysed using a manifest qualitative content analysis approach. RESULTS: Core elements identified during the co-design process included: PROMs collection should be consumer-led and administered by someone other than a clinician; collection at discharge from the healthcare organisation and at 3-6 months post discharge would be most suitable for supporting comprehensive assessment; PROMs should be administered using a variety of modes to accommodate the diversity of consumer preferences, with electronic as the default; and the time taken to complete PROMs should be no longer than 5-10 min. CONCLUSION: This study provides new information on the co-design of a healthcare organisation-wide PROM collection system. Implementing a clinician and patient informed strategy for PROMs collection, that meets their preferences across multiple domains, should address known barriers to routine collection.

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

Introduction: Digitalisation of Electronic Health Record (EHR) data has created unique opportunities for research. However, these data are routinely collected for operational purposes and so are not curated to the standard required for research. Harnessing such routine data at large scale allows efficient and long-term epidemiological and health services research. Objectives: To describe the establishment a linked EHR derived data platform in the National Centre for Healthy Ageing, Melbourne, Australia, aimed at enabling research targeting national health priority areas in ageing. Methods: Our approach incorporated: data validation, curation and warehousing to ensure quality and completeness; end-user engagement and consensus on the platform content; implementation of an artificial intelligence (AI) pipeline for extraction of text-based data items; early consumer involvement; and implementation of routine collection of patient reported outcome measures, in a multisite public health service. Results: Data for a cohort of >800,000 patients collected over a 10-year period have been curated within the platform's research data warehouse. So far 117 items have been identified as suitable for inclusion, from 11 research relevant datasets held within the health service EHR systems. Data access, extraction and release processes, guided by the Five Safes Framework, are being tested through project use-cases. A natural language processing (NLP) pipeline has been implemented and a framework for the routine collection and incorporation of patient reported outcome measures developed. Conclusions: We highlight the importance of establishing comprehensive processes for the foundations of a data platform utilising routine data not collected for research purposes. These robust foundations will facilitate future expansion through linkages to other datasets for the efficient and cost-effective study of health related to ageing at a large scale.

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

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.