Three ways to expand expectations and measurement of patient experience

Current ways of gauging the effectiveness of care, as observed by patients, don’t do enough to enable needed improvements by providers.



This article is part of Open Door Policy: Bringing Patients Into Healthcare Decisions - August/September 2024 COVERstory.

Good patient experience is a universal aspiration for our healthcare system. It’s the first statement among the value-based care Quintuple Aims. Nonetheless, it is the most elusive goal of the five. We don’t seem to have a common or holistic vision of what good patient experience is, nor a system of measurement for it. 

That may sound blasphemous after years of patient surveys, which is how we measure patient experience.  I don’t argue the merit of CAHPS surveys. But they evaluate the patient experience at the most basic levels of acceptable performance.  Do we want provider-patient communication to be expressed only as a function of whether the provider’s information was understandable?  That they could get into an appointment within a reasonable time?  That staff were respectful?  

There’s no question that survey scores can help fix issues in patient communication and access to services. They also are one of the few avenues for a patient voice in the healthcare system.  But if we want to measure the full context of patient experience, and identify barriers, complications and attitudes that we need to fix to get better outcomes and health equity, we have missed the mark. 

The experiences that patients want 

What do patients want from their healthcare interactions and their relationships with providers? How do their experiences affect their results?  We need to address the serious issues of physician-patient interaction, like helping patients make decisions, getting evidence-based information, encouraging self-management, fortifying patient support systems by including them. 

We also must address the known failures of healthcare.  Shouldn’t we measure how the system is supporting patients who have providers across multiple specialties?  Patients want all their providers to communicate with each other and integrate information and treatment.  They want a transition from one type of care to another.  And they want transparency of cost, easy access to their data and transferability of records. 

These are higher-level needs than measured by the clinicians or hospital CAHPS surveys. Those instruments request patient responses on respectful treatment from staff, communication they can understand, and getting an appointment within a reasonable time.  

There are serious decisions in a patient-physician interaction, and potentially life-altering changes for patients. By measuring basic understandability and not content, we view patients as passive recipients of care.  We need to put value on collaboration between provider and patient.  If our goal is to enable patients, that’s where we must start. 

Three ways to enable change 

Capture the real holistic patient experience. Before we measure it, we need a vision of what we want. 

The Agency for Healthcare Research and Quality (AHRQ) lists eight different contributions to patient experience. It includes culturally appropriate care, care coordination, shared decision-making and self-management support.  These are broader dimensions that do more to acknowledge that the patient experience encompasses a partnership in health improvement. 

Other developed nations’ health systems have likewise focused on the concepts of patient-centered care and experience.  The UK National Health Service (NHS) has modified the Picker Institute Standards on Patient-Centered Care, which include principles, actions and value statements for patient experience. Their statements define the end goal, such as “Information, communication and education on clinical status … to facilitate autonomy, self-care and health promotion;” transitions from clinical care to help patients care for themselves; coordination and integration of care across health and social spectrums. These are the aspirational goals that we need healthcare providers to embrace.  

Measures of patient experience need an upgrade to respond to these ideals, while simultaneously modifying measures to increase the current low percentage of responses.  The CAHPS survey is the most complex instrument of its kind, requiring a higher level of literacy and significantly more responses.  

Incorporate patient-reported outcomes. Visit-specific surveys like CAHPS have the advantage of fresh and specific feedback to an interaction, but they give little feedback on the accumulation of events that feed into the results that patients experience.  For this, we need to consider a longer view. 

The development of patient-reported outcomes (PROs) and measures (PROMs) provides an opportunity to include insight into patient recovery from illness and injury, probe the effectiveness of educational and self-management programs, and evaluate feedback from their care. The measures are a mix of outcomes, like pain or mobility levels at the time of the survey, and patient perceptions of their health and confidence or ability to manage it. 

PROMIS is a patient-reported measures system focused on global, physical, mental and social health for adults and children having at least one chronic disease.  There are others, such as Neuro-Qol™ for quality-of-life measures for patients with neurological disease, ASCQ for quality of life for patients with sickle cell disease; and the NIH Toolbox for neuro-behavioral measurements. 

Standardize provider requirements and simplify. There are many CAHPS surveys for different provider types, and they include supplemental surveys. Some groups of providers have mandatory surveys, other voluntary. Sometimes CAHPS results feed into payment model scoring of quality, but for some providers, they don’t. Physician groups outside of ACOs don’t even need to participate. If they do voluntarily, they can use just the basic survey for their provider type. 

We need to reevaluate how we are both defining and measuring patient experience across the health system.  The fact that we are using scores in quality formulas, which affect reimbursement, may be hurting our efforts to improve patient experience. We might make it a low bar to avoid reducing payments or publishing negative scores.   

Let’s regroup.  If our goal is to enable patients to be participants in effective healthcare and have good outcomes, let’s give them the avenues to do it.  We should measure that effort but consider how we use those results to advance patient experience.   

Theresa (Terry) Hush is a healthcare strategist and change expert. She is co-founder and CEO of Roji Health Intelligence, formed in 2002 to help providers implement value-based care with technology and data-guided services.


Return to Open Door Policy: Bringing Patients Into Healthcare Decisions - August/September 2024 COVERstory.

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