How do aggregated patient-reported outcome measures data stimulate health care improvement? A realist synthesis

Abstract

ObjectivesInternationally, there has been considerable debate about the role of data in supporting quality improvement in health care. Our objective was to understand how, why and in what circumstances the feedback of aggregated patient-reported outcome measures data improved patient care.MethodsWe conducted a realist synthesis. We identified three main programme theories underlying the use of patient-reported outcome measures as a quality improvement strategy and expressed them as nine ‘if then’ propositions. We identified international evidence to test these propositions through searches of electronic databases and citation tracking, and supplemented our synthesis with evidence from similar forms of performance data. We synthesized this evidence through comparing the mechanisms and impact of patient-reported outcome measures and other performance data on quality improvement in different contexts.ResultsThree programme theories were identified: supporting patient choice, improving accountability and enabling providers to compare their performance with others. Relevant contextual factors were extent of public disclosure, use of financial incentives, perceived credibility of the data and the practicality of the results. Available evidence suggests that patients or their agents rarely use any published performance data when selecting a provider. The perceived motivation behind public reporting is an important determinant of how providers respond. When clinicians perceived that performance indicators were not credible but were incentivized to collect them, gaming or manipulation of data occurred. Outcome data do not provide information on the cause of poor care: providers needed to integrate and interpret patient-reported outcome measures and other outcome data in the context of other data. Lack of timeliness of performance data constrains their impact.ConclusionsAlthough there is only limited research evidence to support some widely held theories of how aggregated patient-reported outcome measures data stimulate quality improvement, several lessons emerge from interventions sharing the same programme theories to help guide the increasing use of these measures.

Quality of care assessment for people with multimorbidity

“…Considering the evidence reviewed here, we identify two priority areas for further research and development. First, there is an urgent need to establish how to enable the routine collection of patient evaluations of health and health care using patient-reported experience and outcome measures (PREMS and PROMs) and to incorporate these into comprehensive assessment frameworks [21,106,[120][121][122][123][124]. Second, there is a need to advance approaches for the measurement of the role of service users (and their carers) as active partners in service delivery.…”

Haematologists’ experiences implementing patient reported outcome measures (PROMs) in an outpatient clinic: a qualitative study for applied practice

“…Internationally, PROMs are recognized as a means for patients to provide information about their quality of life, symptoms, and experiences of care [4][5][6]. PROM assessments have the potential to introduce the patient's perspective into clinical processes [7,8] via self-report instruments completed by the patient but chosen by the institution [2,9,10].…”

“…This approach is attracting growing attention by patient organisations and by public health authorities seeking to promote and standardize the use of PROMs in clinical healthcare settings as new health technology aims to provide person-centred care at a lower cost [11][12][13][14]. Hence integration of PROMs in clinical practice has been described as the next step, as previous studies have found that the use of PROMs in routine medical care is associated with improved patient-physician communication, enhanced shared decision-making, improved symptom management, and greater satisfaction with care, as well as improved overall quality of life [4,5,15]. However, a critical appraisal of PROMs is lacking: adaption of PROMs from clinical research into clinical practice has potential pitfalls, as PROM data used to describe groups in research should differ from PROMs used to reflect patients' individual health [16].…”

“…Adaption of PROMs has also been linked to measurement uncertainties, including content validity (content relevance and content coverage) and the psychometric properties of the PROM(s) [17,18]; inadequate measurement properties could potentially lead to clinicians using invalid outcomes when consulting with patients, which again could potentially be harmful and detrimental to the patient-doctor relationship. Important knowledge gaps remain regarding the complexity of PROMs usage and how to adapt them across different settings for routine clinical care [3,4]. Despite an extensive volume of literature on the use of PROMs for routine clinical care, it is difficult to reach firm conclusions due to the broad variety of interventions within settingspecific studies [4,19,20].…”

“…Important knowledge gaps remain regarding the complexity of PROMs usage and how to adapt them across different settings for routine clinical care [3,4]. Despite an extensive volume of literature on the use of PROMs for routine clinical care, it is difficult to reach firm conclusions due to the broad variety of interventions within settingspecific studies [4,19,20]. Research is needed on the actual experiences of users of these tools [11,15,21,22].…”