Evaluation and measurement of patient experience

Despite the increasing presence of a variety of measures of patient health care experiences in research and policy, there remains a lack of consensus regarding measurement. The objectives of this paper were to: (1) explore and describe what is known about measures and measurement of patient experience and (2) describe evaluation approaches/methods used to assess patient experience. Patient-experience does not simply reflect clinical outcomes or adherence–driven outcomes; rather it seeks to represent a unique encompassing dimension that is challenging to measure. Several challenges exist when measuring patient experience, in part, because it is a complex, ambiguous concept that lacks a common or ubiquitous definition and also because there are multiple cross-cutting terms (e.g., satisfaction, engagement, perceptions, and preferences) in health care that make conceptual distinction (and therefore measurement) difficult. However, there are many measurement and evaluation approaches that can be used to obtain meaningful insights that can generate actionable strategies and plans. Measuring patient experience can be accomplished using mixed methods, quantitative, or qualitative approaches. The strength of the mixed methods design lies not only in obtaining the “full picture,” but in triangulating (i.e., cross-validating) qualitative and quantitative data to see if and where findings converge, and what can be learned about patient experience from each method. Similar to deciding which measures to use, and which approaches to utilize in measurement, the timing of measurement must also fit the need at hand, and make both practical and purposeful sense and be interpreted in light of the timeframe context. Eliciting feedback from patients and engaging them in their care and health care delivery affords an opportunity to highlight and address aspects of the care experience that need improvement, and to monitor performance with regard to meeting patient experience goals in the delivery of care. The use of core patient-reported measures of patient experience as part of systematic measurement and performance monitoring in health care settings would markedly improve measurement of the ‘total’ patient experience and would heighten our understanding of the patient experience within and across settings. Experience Framework This article is associated with the Policy & Measurement lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this lens

Reexamining “Defining Patient Experience”: The human experience in healthcare

In 2014, the authors came together with the explicit purpose of understanding how people were defining patient experience.1 Our broad review and analysis of the literature led us to a few critical points. One, as our review showed, there was an absence of a commonly used definition around patient experience in healthcare. Two, while consistency in the use of one definition was not revealed, there was great alignment around central components seen as critical to patient experience. Three, we highlighted the recurrence of key concepts from the literature that are also found in the definition offered by The Beryl Institute that include: ‘sum of all interactions,’ ‘the influence of organizational culture,’ ‘patient perceptions,’ and the importance of considering experiences ‘across the continuum of care.’ While this initial inquiry took place seven years ago, we would suggest that these core definitional concepts are no less relevant today and, in fact, may have grown in significance, as those in healthcare have come to better understand the scope and scale of experience. Hence, the purpose of this paper is to assess how the definition has evolved to encompass novel and timely viewpoints that complement the original definition and understand how - and in what ways - the definition has advanced. The definition of patient experience was a significant milestone. It provided simple language for the truly complex nature of what patient experience is and has ultimately served as a foundation for framing the human experience in healthcare. The human experience in healthcare integrates the sum of all interactions, every encounter among patients, families and care partners and the healthcare workforce. It is driven by the culture of healthcare organizations and systems that work tirelessly to support a healthcare ecosystem that operates within the breadth of the care continuum into the communities they serve and the ever-changing environmental landscapes in which they are situated. The human experience in healthcare ultimately is the fruit born from the core of patient experience itself. Experience Framework This article is associated with the Culture & Leadership lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this len

Perceptions of patient-centered care among veterans with gastroesophageal reflux disease on proton pump inhibitor therapy

The aim of this study was to explore perceptions of patient-centered care (PCC) among Veterans with gastroesophageal reflux disease (GERD) on proton pump inhibitor (PPI) therapy using patient-reported outcome (PRO) measures. We used three validated surveys to measure PCC concepts in a national sample of Veterans with GERD on PPI therapy. The Combined Outcome Measure for Risk Communication and Treatment Decision Making Effectiveness (COMRADE) measures patient experiences with risk communication and decision-making. The Patient Activation Measure (PAM) evaluates confidence and knowledge needed for self-management. The Patient Assessment of Care for Chronic Conditions (PACIC) assesses views of chronic care received. We used descriptive statistics to describe patient characteristics and PCC outcomes. Respondents (n=444) were mostly male (95.1%) with a mean age of 67.7 years. The mean COMRADE score measuring patient experiences with risk communication was 55.3 (SD=19.0). The mean PAM score was 56.1 (SD=19.2); 47.8% of respondents were considered disengaged patients lacking confidence and knowledge for self-management. The mean PACIC summary score was 3.03 (SD=1.2), with highest scores in the Delivery System Design/Decision Support (3.38, SD=1.2) subscale, and lowest scores in the Follow-up/Coordination subscale (2.58, SD=1.3). Veterans with GERD reported that care was well-organized and supportive in enhancing decision-making. Potential gaps in patient experiences may exist in delivering follow-up care, enhancing patient activation, and informing patients about risks of available GERD treatments. This is the first study to evaluate patient perceptions of PCC in a national sample of Veterans with GERD on PPI therapy. Findings can inform further investigation and development of targeted interventions to enhance the experience of PCC for individuals with GERD

Examining Participation among Persons with Spinal Cord Injuries and Disorders Using Photovoice

Participation is a significant rehabilitation outcome for individuals with spinal cord injury and/or disorder (SCI/D), yet few qualitative studies have described the social aspect of disability and community participation. We used the photovoice methodology to explore perceptions and experiences related to participation among Veterans with SCI/D. We recruited a convenience sample of individuals with SCI/D at the Hines Veterans Affairs (VA) SCI/D Unit. Participants were asked to take photographs exemplifying their experiences and activities regarding participation. Within four weeks, participants returned their photographs and completed semi-structured interviews to discuss their photographs. Interview transcripts were analyzed using an inductive coding approach to identify emerging themes. Of the 18 Veterans with SCI/D who completed the initial orientation session, 9 (50%) completed the photography phase and follow-up interviews. A majority of participants were White (67%) and the mean age was 64 years. The mean duration of injury was 21.8 years, and 75% of participants were paraplegic. Most participants (78%) were community-dwelling. All participants discussed participation as a highly relevant issue in their lives. A majority of participants (67%) described sports as an example of participation. Over half (56%) emphasized the positive effects of participation (i.e., feelings of enjoyment / accomplishment) in sports as well as engaging in faith-based activities, being outdoors, and managing business- or household-related responsibilities. Barriers to participation were mobility impairments, lack of transportation and cost. Findings from this study can be used to address environmental changes or other accommodations that influence participation, both inside and outside the health care setting

Veterans’ experiences of patient-centered care: Learning from guided tours

In this paper the authors seek to examine Veterans’ experiences with patient-centered care (PCC) at 2 United States Veterans Affairs (VA) facilities. The authors conduct their research through a process of guided tours, in which the participant leads the evaluator through an environment and shares thoughts, feelings, and experiences. Tours were conducted in April 2013 with 30 Veterans receiving care at these VA facilities. Via the tours participants discussed aspects of the environment of care, and described some as ‘welcoming,’ while describing others as ‘chaotic.’ Participants provided multiple examples of PCC, frequently defining PCC in terms of accessibility of appointments, continuity and familiarity with providers, and shared decision-making and communication. They highlighted that their identity as Veterans influenced their preferences for care, including efficiency, need for compassion, and consideration of mental and social health needs. Some suggested VA expand upon this idea of shared identity by creating a ‘Veteran community,’ and including increased opportunities for socialization with other Veterans, and access to the arts. The authors conclude that the impact of shared identity on care preferences has received limited attention in the literature; further, the impact of identity may be unique to Veterans, who represent not only a group of patients being seen at the same facilities, but a social group with shared history and characteristics, as well. These results can be utilized to expand implementation of PCC innovations, to improve health and well-being of Veterans

Prevalence and correlates of morbidities and preventive care use in individuals with multiple sclerosis.

Prevalence and correlates of morbidities and preventive care use in individuals with multiple sclerosis

Reexamining “Defining Patient Experience”: The human experience in healthcare

In 2014, the authors came together with the explicit purpose of understanding how people were defining patient experience.1 Our broad review and analysis of the literature led us to a few critical points. One, as our review showed, there was an absence of a commonly used definition around patient experience in healthcare. Two, while consistency in the use of one definition was not revealed, there was great alignment around central components seen as critical to patient experience. Three, we highlighted the recurrence of key concepts from the literature that are also found in the definition offered by The Beryl Institute that include: ‘sum of all interactions,’ ‘the influence of organizational culture,’ ‘patient perceptions,’ and the importance of considering experiences ‘across the continuum of care.’ While this initial inquiry took place seven years ago, we would suggest that these core definitional concepts are no less relevant today and, in fact, may have grown in significance, as those in healthcare have come to better understand the scope and scale of experience. Hence, the purpose of this paper is to assess how the definition has evolved to encompass novel and timely viewpoints that complement the original definition and understand how - and in what ways - the definition has advanced. The definition of patient experience was a significant milestone. It provided simple language for the truly complex nature of what patient experience is and has ultimately served as a foundation for framing the human experience in healthcare. The human experience in healthcare integrates the sum of all interactions, every encounter among patients, families and care partners and the healthcare workforce. It is driven by the culture of healthcare organizations and systems that work tirelessly to support a healthcare ecosystem that operates within the breadth of the care continuum into the communities they serve and the ever-changing environmental landscapes in which they are situated. The human experience in healthcare ultimately is the fruit born from the core of patient experience itself. Experience Framework This article is associated with the Culture & Leadership lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this len

Influenza infection control guidance provided to staff at Veterans Affairs facilities for veterans with spinal cord injury during a pandemic(dagger)

CONTEXT/OBJECTIVE: To assess guidance provided to staff at Veterans Affairs (VA) healthcare facilities on H1N1 influenza infection control for veterans with spinal cord injuries and disorders (SCI/D). STUDY DESIGN: Cross-sectional qualitative semi-structured interviews. SETTING: Thirty-three VA healthcare facilities from throughout the United States that provide care to veterans with SCI/D. PARTICIPANTS: Thirty-three infection control key informants, each representing a VA healthcare facility. INTERVENTIONS: None. OUTCOME MEASURES: Infection control practices, including vaccination practices, hospital preparedness, and recommendations for future pandemics, both in general and specifically to SCI/D. RESULTS: Most (n = 26, 78.8%) infection control key informants believed veterans with SCI/D were at increased risk for influenza and complications, but only 17 (51.5%) said veterans with SCI/D were treated as a priority group for vaccination at their facilities. There was little special guidance provided for treating veterans with SCI/D, and most (n = 28, 84.8%) informants said that infection control procedures and recommendations were applied universally. Yet, 10 key informants discussed \u27unique challenges\u27 to infection control in the SCI/D population. Informants discussed the potential for infectious agents to be spread through shared and common use equipment and the necessity of including caregivers in any vaccination or educational campaigns. CONCLUSION: Greater input by experts knowledgeable about SCI/D is recommended to adequately address pandemic influenza within healthcare facilities where individuals with SCI/D receive care