Use of Patient-Reported Data within the Acute Healthcare Context: A Scoping Review (original) (raw)
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Background: The feedback of patient-reported outcome measures (PROMs) data is intended to support the care of individual patients and to act as a quality improvement (QI) strategy. Objectives: To (1) identify the ideas and assumptions underlying how individual and aggregated PROMs data are intended to improve patient care, and (2) review the evidence to examine the circumstances in which and processes through which PROMs feedback improves patient care. Design: Two separate but related realist syntheses: (1) feedback of aggregate PROMs and performance data to improve patient care, and (2) feedback of individual PROMs data to improve patient care. Interventions: Aggregate – feedback and public reporting of PROMs, patient experience data and performance data to hospital providers and primary care organisations. Individual – feedback of PROMs in oncology, palliative care and the care of people with mental health problems in primary and secondary care settings. Main outcome measures: Aggregate – providers’ responses, attitudes and experiences of using PROMs and performance data to improve patient care. Individual – providers’ and patients’ experiences of using PROMs data to raise issues with clinicians, change clinicians’ communication practices, change patient management and improve patient well-being. Data sources: Searches of electronic databases and forwards and backwards citation tracking. Review methods: Realist synthesis to identify, test and refine programme theories about when, how and why PROMs feedback leads to improvements in patient care. Results: Providers were more likely to take steps to improve patient care in response to the feedback and public reporting of aggregate PROMs and performance data if they perceived that these data were credible, were aimed at improving patient care, and were timely and provided a clear indication of the source of the problem. However, implementing substantial and sustainable improvement to patient care required system-wide approaches. In the care of individual patients, PROMs function more as a tool to support patients in raising issues with clinicians than they do in substantially changing clinicians’ communication practices with patients. Patients valued both standardised and individualised PROMs as a tool to raise issues, but thought is required as to which patients may benefit and which may not. In settings such as palliative care and psychotherapy, clinicians viewed individualised PROMs as useful to build rapport and support the therapeutic process. PROMs feedback did not substantially shift clinicians’ communication practices or focus discussion on psychosocial issues; this required a shift in clinicians’ perceptions of their remit. Strengths and limitations: There was a paucity of research examining the feedback of aggregate PROMs data to providers, and we drew on evidence from interventions with similar programme theories (other forms of performance data) to test our theories. Conclusions: PROMs data act as ‘tin openers’ rather than ‘dials’. Providers need more support and guidance on how to collect their own internal data, how to rule out alternative explanations for their outlier status and how to explore the possible causes of their outlier status. There is also tension between PROMs as a QI strategy versus their use in the care of individual patients; PROMs that clinicians find useful in assessing patients, such as individualised measures, are not useful as indicators of service quality. Future work: Future research should (1) explore how differently performing providers have responded to aggregate PROMs feedback, and how organisations have collected PROMs data both for individual patient care and to improve service quality; and (2) explore whether or not and how incorporating PROMs into patients’ electronic records allows multiple different clinicians to receive PROMs feedback, discuss it with patients and act on the data to improve patient care. Study registration: This study is registered as PROSPERO CRD42013005938. Funding: The National Institute for Health Research Health Services and Delivery Research programme
BMJ open, 2016
Explore how patient-reported experience measures (PREMs) are collected, communicated and used to inform quality improvement (QI) across healthcare settings. Systematic review. Various primary and secondary care settings, including general practice, and acute and chronic care hospitals. A full range of patient populations from (children through to the elderly) and staff (from healthcare practitioners to senior managers). Scientific databases were searched (CINAHL, PsycINFO, MEDLINE and Cochrane Libraries) as was grey literature. Qualitative and quantitative studies describing collection of PREM data and subsequent QI actions in any healthcare setting were included. Risk of bias was assessed using established criteria. Of 5312 initial hits, 32 full texts were screened, and 11 were included. Patient experience data were most commonly collected through surveys and used to identify small areas of incremental change to services that do not require a change to clinician behaviour (eg, chan...
PLOS ONE
Background Patient-reported outcome measures (PROMs) or patient-reported outcomes (PROs) are used by clinicians in everyday clinical practice to assess patients’ perceptions of their own health and the healthcare they receive. By providing insight into how illness and interventions impact on patients’ lives, they can help to bridge the gap between clinicians’ expectations and what matters most to the patient. Given increasing focus on patient-centred care, the objective of this meta-synthesis was to summarise the qualitative evidence regarding patients’ perspectives and experiences of the use of PROMs in clinical care. Methods A systematic search of the following databases was undertaken in August 2020: Medline, EMBASE, EMCARE, PsychINFO, Scopus and the Cochrane Library. This review was conducted and reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Methodological quality of the included studies was assessed using the Cr...
BMC Health Services Research
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 researc...
2020
Background: Substantial literature has highlighted the importance of patient-reported outcome and experience measures (PROMs and PREMs, respectively) to collect clinically relevant information to better understand and address what matters to patients. The purpose of this systematic review is to synthesize the evidence about strategies for implementing individual-level PROMs and PREMs data by healthcare providers in their everyday practice.Methods: This mixed method systematic review protocol describes the design of our synthesis of the peer-reviewed research evidence (i.e., qualitative, quantitative, and mixed methods), systematic reviews, organizational implementation projects, expert opinion, and grey literature. Keyword synonyms for “PROMs,” PREMs,” and “implementation” will be used to search eight databases with limiters of English from 2009 to 2019. Study selection criteria includes implementation at the point-of-care by healthcare providers in any practice setting. Eligible st...
International Journal for Quality in Health Care, 2017
Purpose: Knowledge about patient experience within emergency departments (EDs) allows services to develop and improve in line with patient needs. There is no standardized instrument to measure patient experience. The aim of this study is to identify patient reported experience measures (PREMs) for EDs, examine the rigour by which they were developed and their psychometric properties when judged against standard criteria. Data sources: Medline, Scopus, CINAHL, PsycINFO, PubMed and Web of Science were searched from inception to May 2015. Study selection: Studies were identified using specific search terms and inclusion criteria. A total of eight articles, reporting on four PREMs, were included. Data extraction: Data on the development and performance of the four PREMs were extracted from the articles. The measures were critiqued according to quality criteria previously described by Pesudovs K, Burr JM, Harley C, et al. (The development, assessment, and selection of questionnaires. Optom Vis Sci 2007;84:663-74.). Results: There was significant variation in the quality of development and reporting of psychometric properties. For all four PREMs, initial development work included the ascertainment of patient experiences using qualitative interviews. However, instrument performance was poorly assessed. Validity and reliability were measured in some studies; however responsiveness, an important aspect on survey development, was not measured in any of the included studies. Conclusion: PREMS currently available for use in the ED have uncertain validity, reliability and responsiveness. Further validation work is required to assess their acceptability to patients and their usefulness in clinical practice.
Cancer Nursing, 2020
Background: Application of Patient-Reported Outcome Measures (PROM) seems to be a step toward person-centered care and identifying patients' unmet needs. Objective: To investigate the experiences of nurses when PROMs were introduced in a hematological clinical practice as part of a multimethod intervention study. Methods: The qualitative framework was guided by the Interpretive Description methodology (ID), including a focused ethnographic approach with participant observations and interviews. The instruments introduced were the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 and the Outcomes and Experiences Questionnaire. Analysis was inspired by Habermas' critical theory. Results: The analysis revealed two predominant themes of nurses' experiences: "PROMs are only used when there is time-which there rarely is" and "PROMs cannot be used without a strategy, just because they are present". Conclusions: Nurses' experiences with PROMs depended on the systems' rationale, resulting in limited capacity to use and explore PROMs. Nurses believed that PROMs might have the potential to support clinical practice, as PROMs added new information about patients' conditions but also identified needs within supportive care, leaving the potential of PROMs uncertain. Simply introducing PROMs to practice does not necessarily actuate their potential because use of PROMs is dependent on institutional conditions and mandatory tasks are prioritized. Implications for Practice: This study contributes knowledge of nurses' experiences when introducing PROMs in a hematological outpatient clinical practice. Findings can guide future PROMs research within the field of nursing.
Patient Experience Journal, 2018
Patient experience teams in NHS Wales' Health Boards and Trusts are working across the country to collect patient experience feedback from members of the public who access health care services. Although this work is advanced in many areas, there is currently no way of benchmarking across organisations, reducing opportunities for shared learning. We aimed to work with patients and colleagues across Wales to agree a set of universal Patient Reported Experience Measures (PREMs) questions. Working with patient experience teams, patient groups and Welsh Government, the NHS Wales Patient Reported Outcome Measures (PROMs), Patient Reported Experience Measures (PREMs) and Effectiveness Programme team has agreed a national set of PREMs questions for use across Wales. This process led on from previous work and included patient focus groups, patient experience leads and clinical input. Patients using secondary care services in Wales will be invited to complete the agreed PREMs survey along with patient outcome measures, via an electronic platform. This will provide a consistent method of data collection which will allow us to benchmark across hospitals and organisations in NHS Wales, identifying areas of good practice, as well as areas where patients report poorer experiences. This will allow local patient experience teams to target more in-depth experience gathering initiatives and carry out appropriate improvement programmes, making better use of resources. Identifying and sharing good practice will allow NHS Wales to advance patient experience, while triangulation with patient and clinical outcomes will drive the Prudent Healthcare agenda.
Monitoring of patients' physical and psychological problems during and after cancer treatment is essential in modern oncology practice. Traditional clinical methods can be supplemented by Patient-Reported Outcomes Measures (PROMs) measures. The potential role of PROMs is recognised and endorsed by national and international practice guidelines. The introduction of formal measurement of PROMs in clinical practice is a complex health care innovation requiring careful planning, design and successful implementation of a number of essential components, such as choosing the patient questionnaire(s), a convenient affordable electronic method for reporting and display in hospital records and engaging clinicians to use and act on the reports. There is mounting research evidence that using PROMs in individual patient care in oncology is beneficial to patients, but this approach has not found a place in routine clinical practice. A brief overview of this evidence will be provided. Following this, the presentation will focus on examples of incorporating PROMs and eHealth interventions into routine patient care during and after cancer treatment, drawing on 20 years' experience in Leeds of using electronic systems for capturing patient reported data in oncology settings. Examples will be given of: 1) Monitoring toxicity during systemic cancer treatment using online PROMs integrated with Electronic Patient Records (randomized trial part of NIHR eRAPID programme); 2) Service development project-Remote follow-up of testicular cancer patients using online PROMs plus community-based investigations. Examples of other online PROMs systems will be presented. The values and challenges of PROMs integration in routine oncology practice will be discussed.