While health care pursues the important trend of putting patients at the center of care, the terms used to describe this goal are proliferating. From patient experience to patient satisfaction, patient engagement to patient activation, patient-reported outcome measures to patient-generated health data, these terms muddy the discourse instead of crystallizing it. The following taxonomy is an attempt to classify some of these terms and make some distinctions. It is by no means the final word, but may serve to push forward a dialogue on what we mean when we talk about the patient voice.
In the Design of Care
Too often, the health care system has designed patient care around the needs of providers and around infrastructure — particularly high-cost fixed infrastructure. This is common in industries where resources are centralized, specialized, and over-capacity, but it is unsustainable in health care. The design of care must ultimately be centered on patients.
Patient-centered design (system design)
Patients should play a leading role in designing all aspects of health care — from physical spaces, to workflows, to communication templates. Provider systems and payers have an important perspective but often assume knowledge of the patient’s perspective, sometimes incorrectly. Incorporating the patient’s voice in the design of systems of care can improve the quality of care delivered. Patient-Family Advisory Committees (PFACs) are a great place to gather this input.
Co-production of care (individual design)
As important as the patient voice is in system design, it is equally important in the care of each individual. Treating patients as the object or even the subject of care is a misconception in today’s world. Instead, patients should be considered co-producers of care, because every health outcome is the product of provider activity and patient activity. Patients should have a say in the strategies to pursue certain outcomes and how the logistics of how those strategies are carried out.
As an Input to Care
Thankfully, health care has moved away from the notion that “objective” data is all that is needed. There are numerous ways in which providers should consider an individual patient’s voice as an input variable in deciding what care to deliver and how to deliver that care. All of these inputs can be considered patient-generated health data.
Goals, values, and preferences
All patients are not the same. Even in the case of the same diagnosis, there are differences in what individual patients want out of their care (outcomes) and what is important to them along the way (processes). Trying to achieve a good result without understanding how a patient defines “good” requires assumptions that often lead providers astray.
Patient engagement — how much a patient is willing and able to take in new information and grapple with the realities of care — is an important input. Treatment tactics used for a highly engaged patient may fail on a less engaged patient. Conversely, a lowest common denominator approach may squander opportunities for exceptional results in more engaged patients. Patient engagement is an important pre-condition for patient activation, which is using one’s own health care knowledge, skills, and confidence to take independent action related to one’s health.
Biometric data / sensors
Our bodies and activities speak volumes — often generating much more relevant information than labs or radiographs. Biometric data, such as steps or sleep, will increasingly be a critical input to patients’ risks for particular outcomes as well as rich targets for intervention.
Patient-Reported Outcome Measures (PROMs)
PROMs validly quantify symptoms, physical function, mental health, and quality of life. Quantifying symptoms and function allows providers to augment history-taking with reliable numerical measurement to determine the most appropriate intervention.
- Health-related social needs: Social determinants of health (SDH) are known to contribute more to the health outcomes of a population than to care delivery. Health-related social needs indicate patient needs related to housing, food, the ability to afford medications, community safety, etc. Trying to treat medical conditions without considering the context of these needs will often be less effective.
- Informational needs (language, preferred communication, health literacy, knowledge): People consume information differently, and have different preferences for formats and channels such as a text message, phone call, or written letter. Understanding the health literacy of a patient is also crucial for accomplishing one of the most important levers in health care: communication.
- Social isolation: Loneliness can be deadly; the social context of a patient is an important input to care. It’s important for providers to know whether a patient lives alone or has a supportive spouse or children, whether there is a friend or a community to provide support, and who a patient can go home to after an episode of care.
As the Outcome of Care
Health care commonly measures hard outcomes like mortality, but some of the outcomes that matter most to patients are only measurable by quantifying the voice of the patient.
Patients usually seek care to ameliorate a symptom, improve physical function, or protect mental health. PROMs measure these outcomes
In addition to the length and quality of life, one important outcome of care is peace of mind. When a care episode is over, it matters to patients whether they feel confidence that all that should have been done was done, independent of other outcomes. Confidence is built through good communication, a sense of teamwork among providers, and the belief that the provider cares about the patient.
This measure of how well health care meets the patient’s expectations is distinct from having confidence in care. Aspects of satisfaction include wait times, amenities, the processes of receiving care, and how the patient felt along the care journey.
Download “Measuring What Matters and Capturing the Patient Voice” for a roundtable discussion on this topic, survey data analysis, and methodology.