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Distinguishing Patient Experience, Patient-Reported Outcomes, and PGHD

Patient experience, patient-reported outcomes, and patient-generated health data (PGHD) all give insight into different aspects of patient healthcare.

In the era of patient-centered care, it is critical for medical institutions to collect key insights from the patient. Those insights usually include patient experience data, patient-reported outcomes (PROs), and patient-generated health data (PGHD).

But like so much of healthcare, each of those types of information often get conflated or used interchangeably. Because they each represent some sort of patient sentiment and patient report, it’s easy to see patient experience, PROs, and PGHD as one in the same.

The reality is that patient experience data, PROs, and PGHD are three distinct types of information that all give healthcare leaders a glimpse into a different part of the patient’s healthcare journey. By understanding the nuances between the three, providers will be better equipped to use that information to further patient-centered care.

Patient experience, satisfaction data

Patient experience is a key clinical quality measure that looks at a patient’s perception of her entire healthcare journey. Healthcare organizations measure patient experience and patient satisfaction to determine how a patient felt about the healthcare that she received.

“Patient experience encompasses the range of interactions that patients have with the health care system, including their care from health plans, and from doctors, nurses, and staff in hospitals, physician practices, and other health care facilities,” the Agency for Healthcare Research & Quality (AHRQ) says on its website.

Particularly, patient experience is related to the process of care.

“As an integral component of health care quality, patient experience includes several aspects of health care delivery that patients value highly when they seek and receive care, such as getting timely appointments, easy access to information, and good communication with health care providers,” AHRQ adds.

Typically, healthcare professionals regard patient experience as an objective measure. There are certain clinical guidelines organizations can follow that determine a good patient experience, like having convenient office hours, staying on schedule with appointments, and sticking to patient-provider communication best practices.

On the other hand, patient satisfaction—which is strongly correlated with patient experience—measures whether healthcare delivery met patient expectations. This is not always objective because patient satisfaction is defined by an individual’s past experiences and personal definition of a good encounter.

Healthcare organizations measure patient satisfaction and experience using a number of tools. When reporting patient experience as a clinical quality measure, a healthcare organization might submit CAHPS scores or a homegrown survey. Most hospitals that develop their own patient satisfaction surveys borrow at least some questions from CAHPS.

Other organizations assess patient sentiment using less formal measures that they usually do not submit to payers. Real-time patient experience tools, for example, ask patients about how their hospital stay is going, giving clinical staff the opportunity to remedy a negative situation.

Retrospectively, online provider reviews can give hospitals and provider organizations insights into their community reputation. Organizations that find they have negative online reviews should appoint someone in their patient experience or marketing offices to contact individuals who left bad reviews and ask how they can make the situation right.

Patient-reported outcomes

If patient experience data reflects how a patient feels about her healthcare journey, patient-reported outcomes reflect the impact a treatment or service had on her physical health and wellness.

According to the National Quality Forum, PROs are “any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else,” the organization says on its website.

More specifically, PROs measure quality of life and functional status, most experts agree.

PROs are important because they signal to a healthcare provider whether a treatment is actually working and whether a patient is recovering in a typical fashion. A clinician should be able to intervene with a new treatment measure if PROs signal anything abnormal.

PROs might look at patient pain levels, fatigue, depression, sleep quality, and social function. Some common PROM questions include:

  • In general, please rate how well you carry out your usual social activities and roles. (This includes activities at home, at work and in your community, and responsibilities as a parent, child, spouse, employee, friend, etc.)
  • To what extent are you able to carry out your everyday physical activities such as walking, climbing stairs, carrying groceries, or moving a chair?
  • How often have you been bothered by emotional problems such as feeling anxious, depressed or irritable?
  • In general, how would you rate your physical health?

PROs are different from patient experience in that they are asking about how the patient perceives the outcomes of a clinical encounter, service, or treatment. A patient could report a positive patient experience, punctuated by good patient-provider communication and a convenient appointment slot, but crummy PROs.

That would indicate that although the patient liked her doctor and provider organization, she isn’t feeling any better. She may visit the same clinician for further intervention but might need a different type of medical care.

Patient-generated health data (PGHD)

PGHD is an umbrella term that may include PROs and patient experience data, as well as any other health-related information the patient contributes.

“Patient-generated health data (PGHD) are health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern,” so says the Office of the National Coordinator for Health IT.

PGHD puts patients directly at the center of care because they, and their caregivers, are the arbiters of this information. Patients get to choose whether and how they share PGHD because this information comes from them and not from a provider during a clinical encounter.

Common types of PGHD include, but are not limited to:

  • Health histories
  • Patient-reported outcomes
  • Patient experience data
  • Data gleaned from remote monitoring tools or wearables
  • Symptoms
  • Biometric data
  • Lifestyle choices

PGHD isn’t necessarily different from patient experience data and PROs; rather, it encompasses them and other types of health information a patient might disclose. All of this is important in the pursuit of patient-centered care.

After all, understanding a patient’s perception of her care—whether it was a good experience and the treatment worked well—is important to meeting the patient where she is in the future. Using various types of PGHD, including patient experience data and PROs, can help the patient and provider work together to identify a better care plan moving forward, ultimately delivering on healthcare that is truly patient-centered.

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