PurposeThe Institute of Medicine (IOM) identified patient-centeredness as crucial to quality health care. The IOM endorsed six patient-centeredness dimensions that stipulated that care must be: respectful to patients’ values, preferences, and expressed needs; coordinated and integrated; provide information, communication, and education; ensure physical comfort; provide emotional support; and involve family and friends. Patient-reported measures examine the patient’s perspective and are essential to the accurate assessment of patient-centered care. This article’s objectives are to: 1) use the six IOM-endorsed patient-centeredness dimensions as a framework to outline why patient-reported measures are crucial to the reliable measurement of patient-centered care; and 2) to identify existing patient-reported measures that assess each patient-centered care dimension.MethodsFor each IOM-endorsed patient-centeredness dimension, the published literature was searched to highlight the essential role of patients in assessing patient-centered care and informing quality improvement efforts. Existing literature was also searched to identify examples of patient-reported measures that assess each patient-centeredness dimension.ConclusionPatient-reported measures are arguably the best way to measure patient-centeredness. For instance, patients are best positioned to determine whether care aligns with patient values, preferences, and needs and the Measure of Patient Preferences is an example of a patient-reported measure that does so. Furthermore, only the patient knows whether they received the level of information desired, and if information was understood and can be recalled. Patient-reported measures that examine information provision include the Lung Information Needs Questionnaire and the EORTC QLQ-INFO25. In relation to physical comfort, only patients can report the severity of physical symptoms and whether medications provide adequate relief. Patient-reported measures that investigate physical comfort include the Pain Care Quality Survey and the Brief Pain Inventory. Using patient-reported measures to regularly measure patient-centered care is critical to identifying areas of health care where improvements are needed.

BackgroundTo ensure the provision of patient‐centred health care, it is essential that consumers are actively involved in the process of determining and implementing health‐care quality improvements. However, common strategies used to involve consumers in quality improvements, such as consumer membership on committees and collection of patient feedback via surveys, are ineffective and have a number of limitations, including: limited representativeness; tokenism; a lack of reliable and valid patient feedback data; infrequent assessment of patient feedback; delays in acquiring feedback; and how collected feedback is used to drive health‐care improvements.ObjectivesWe propose a new active model of consumer engagement that aims to overcome these limitations. This model involves the following: (i) the development of a new measure of consumer perceptions; (ii) low cost and frequent electronic data collection of patient views of quality improvements; (iii) efficient feedback to the health‐care decision makers; and (iv) active involvement of consumers that fosters power to influence health system changes.

Health utilization and need assessment data suggest there is considerable variation in access to outpatient specialist care. However, it is unclear if the types of barriers experienced are specific to chronic disease groups or experienced universally. This systematic review provides a detailed summary of common and unique barriers experienced by chronic disease groups when accessing and receiving care, and a synthesized list of possible health service initiatives to improve equitable delivery of optimal care in high-income countries. Quantitative articles describing barriers to specialist outpatient services were retrieved from CINAHL, MEDLINE, Embase, and PyscINFO. To be eligible for review, studies: were published from 2002 to May 2014; included samples with cancer, diabetes mellitus, osteoporosis, arthritis, ischaemic heart disease, stroke, asthma, chronic pulmonary disorder (COPD) or depression; and, were conducted in high-income countries. Using a previously validated model of access (Penchansky and Thomas’ model of fit), barriers were grouped according to five overarching domains and defined in more detail using 33 medical subject headings. Results from reviewed articles, including the scope and frequency of reported barriers, are conceptualized using thematic analysis and framed as possible health service initiatives. A total of 3181 unique records were screened for eligibility, of which 74 studies were included in final analysis. The largest proportion of studies reported acceptability barriers (75.7 %), of which demographic disparities (44.6 %) were reported across all diseases. Other frequently reported barriers included inadequate need assessment (25.7 %), information provision (32.4 %), or health communication (20 %). Unique barriers were identified for oncology, mental health, and COPD samples. Based on the scope, frequency and measurement of reported barriers, eight key themes with associated implications for health services are presented. Examples include: common accommodation and accessibility barriers caused on service organization or physical structure, such as parking and appointment scheduling; common barriers created by poor coordination of care within the healthcare team; and unique barriers resulting from inadequate need assessment and referral practices. Consideration of barriers, across and within chronic diseases, suggests a number of specific initiatives are likely to improve the delivery of patient-centered care and increase equity in access to high-quality health services.Electronic supplementary materialThe online version of this article (doi:10.1186/s12939-015-0179-6) contains supplementary material, which is available to authorized users.