Patient-led clinical decisions

Over the past few years there has been a fundamental shift in focus from the traditional clinical ways of measuring health and the effects of treatment on the patient, to one that is increasingly accompanied by outcomes based on the patient’s perspective and measured by Patient Reported Outcome Measures (PROMs). The importance of reporting outcomes from the perspective of the patient has been noted by a number of policy and national initiatives. For example, Lord Dazi in High Quality Care for All – NHS Next Stage Review Final Report stated “Just as important is the effectiveness of care from the patient’s own perspective, which will be measured through patientreported outcome measures (PROMs).” From 1 April 2009 all licensed providers of NHS-funded elective procedures, including hip and knee replacements, groin hernia surgery or varicose vein surgery, have been required to implement the requirement to collect PROMs contained in the Standard NHS Contract for Acute Services. This was followed in 2010 by the UK Department of Health, in collaboration with the University of Oxford, undertaking a pilot study to determine if PROMs are an acceptable way of collecting health information for a number of long-term conditions (LTCs) in primary care. For a decade or more, PROMs have played, and continue to play, a significant role in national and international academic research, clinical trials and observational research. The importance of PROMs has been recognised by the United States Food and Drug Administration (FDA), which now recommends their inclusion in clinical trials and is a part of a movement that acknowledges that the patient is the best source of information about how he or she feels.

The patients perspective

Access to the patients’ perspective can impact on a wide range of aspects related to the delivery of effective health care including: identifying issues faced by patients and their families living with an illness; how their experiences and perceptions might differ at different life stages, or because of gender and ethnicity; and how knowledge of these differences might impact on the treatment decisions and adherence and provide a better understanding as to how healthpractitioners can affect outcome. Understanding the patient’s perspective can also help avoid making assumptions that health is the only, or a major, priority for patients, highlighting that patients are also concerned about other aspects of their lives.1 Taking account of the patients’ perspective can perhaps be best described as ‘not forgetting the person behind the patient label.