The PRIME project: developing a patient evidence‐base

Abstract

Background The concept of evidence has become firmly rooted in health care, with most importance placed on the outcome of research in clinical and economic spheres. Much less emphasis is placed on the patientÕs contribution to evidence which remains relatively vague, of low status and often difficult to integrate with other forms of knowledge.

Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review

“…Dominance of the assessment of emotional well-being and the symptomatic impact of CFS/ME illustrated in this review, and the lack of CFS/ME-specific measure that captures the broad-ranging experience of the condition highlights the discrepancies that exist between outcomes assessed in research and those identified by patients as significant to their experience of living with CFS/ME, including social well-being and physical function [6]. The poor quality of reviewed PROMs combined with the failure to measure genuinely important patient outcomes suggests that high quality and relevant information about treatment effect is lacking [123].…”

“…Most measures reflect a symptom-dominated, unidimensional assessment of disease impact. No measure clearly captures the broad-ranging nature of CFS/ME, and few capture issues such as emotional and social well-being, and cognitive functioning [6]. The CFS-APQ and IMQ have been most widely applied, but few measures have undergone rigorous evaluations, and the limited evidence of measurement and practical properties renders it impossible to recommend any CFS/ME-specific PROM.…”

“…To support such involvement, patients require relevant and credible information about disease impact and the relative success of health care. For interventions concerned with fatigue, physical disability, social well-being and general well-being-key concerns in CFS/ME [6]-the patient's view of treatment should be paramount [7]. A patient's experience and expertise regarding their health and associated health care is an essential resource that should be actively utilized to communicate the relevant outcomes of care, and it is incumbent upon all stakeholders within health care to ensure that methods adopted to capture and measure the patient's voice are credible.…”

Moving Center Stage: patients claim their role in healthcare

“…In fact, there are many examples, where patients or their caregivers themselves are prioritizing, financing, or organizing innovation such as the Téléthon movement in France which is supporting impressive research activities purely driven by PPI [16]. In addition, there are many examples of patient organisations actively surveying patients for their experiences with their therapies in ways and words, which are relevant to them (patient based evidence) [17,18]. Thus, patients have already learned to speak the fully differentiated language of innovation and will not be treated only as subjects of research.…”

Can we help patients have a better experience? Implementing NICE guidance on patient experience

“…The GQS represent a landmark in the history of patient experience initiatives, as it tacitly acknowledges the importance of patient-based evidence (or experiences), alongside clinical and economic evidence 8. This reflects the position outlined by Richard Doll, the eminent epidemiologist, who stated that there is no point providing clinically effective and economically efficient care that no one wants 9…”