Patient Engagement
Capturing the Patient Voice

Adding Individual Insights to the Patient Experience Toolkit

Article · October 12, 2017

Health care systems are acutely aware of the imperative to enhance the patient experience and ensure patient engagement. Partnering with patients, reducing wait times, delivering effective care, reducing pain and suffering, and providing safe, high-reliability care are key issues that have become a priority for health care leaders.

Metrics to capture the patient experience have been evolving. There are multiple surveys to query patients and receive comments, from the federal government’s series of CAHPS surveys to the assessments developed by health care consultancies. In addition, start-up patient experience and reputation management companies are mining hospital and physician reviews posted on social media. Other companies are applying natural language processing to gain a deeper understanding of the qualitative data generated by patient comments.

These tools all rely on large datasets. They are invaluable for understanding the big picture of the overall patient experience. Percentiles and trending are not sufficient, however. As a supplement to these datasets, there are additional tools in the patient experience measurement toolkit that rely on “n of 1” observations to gain a deep understanding of what the patient is going through in trying to navigate the care system.

Patient Shadowing

Anthony DiGioia, MD, and his team at the Patient and Family Centered Care Innovation Center of UPMC have developed a methodology to capture health care through the patient’s eyes. The core activity is following a patient and observing what happens as he or she goes through an entire care experience. Dr. DiGioia developed the methodology in his orthopedic practice by focusing on the care experience of a hip replacement, examining the entire process from arrival at the hospital to discharge and post-operative rehab.

Numerous opportunities for improvement emerged. For example, some post-op hip replacement patients were waiting to be picked up from the hospital in the rain. The team also discovered a way to minimize the need for blood transfusion during surgery. Other provider groups have used the shadowing methodology to improve. A trauma team implemented the use of iPads to help keep parents and children digitally connected after suffering a motor vehicle accident, as they were taken to adult and pediatric hospitals separately. Another team shadowed the pediatric blood draw experience and redesigned it to reduce anxiety and fear.

Hassle Mapping

In their book, Demand: Creating What People Love Before They Know They Want It, Adrian Slywotzky and Karl Weber describe the technique of hassle mapping. The premise is that each service experience has the potential to create frustrations, inconveniences, disappointments, and complications for consumers. Slywotzky points to the example of Reed Hastings. Hastings was able to improve upon the hassles created for customers at Blockbuster Video in the late 1990s, including: two trips to the store to pick up and return a video, parking, wasting time in the store, a limited selection, and frequent late fees. The use of emerging technology with the purpose of solving these hassles resulted in Netflix.

Like patient shadowing, a hassle map can be used to uncover all of the difficulties and inconveniences that a patient encounters along the way. Consider how the hassle map can be applied to the various care experiences in the health system: making an outpatient appointment, an ER visit, the surgical experience, and hospitalization, to name a few areas ripe for improvement. This construct offers unlimited possibilities to uncover the frustrations encountered by patients and their families.

Empathy Mapping

An empathy map is another tool that can shed light on what patients are feeling as they move through the care experience. Empathy mapping originated in design thinking, and is used to display people’s various emotions as they navigate any experience. An empathy map may uncover emotions ranging from fear, anxiety, surprise, delight, confusion, anger, reassurance, comfort, and peace of mind all within one experience. The map can show not only positive and negative emotions, but each emotion can also be graded for intensity. There are many applications to health care experiences. As one shadows a patient, one can observe the patient’s body language, facial expressions, and response, and ask how the patient is feeling at different points during the care experience. A window into the patient’s emotions can be a strong motivator to redesign care experiences in order to change negative emotional experiences to positive ones.

Most patient experience work today depends on collecting and analyzing large volumes of survey data. Reliance on survey data and comments alone is insufficient, however. Caregivers must look beyond spreadsheets and use other tools that focus on individuals. These collective “n of 1” observations can then become key drivers to redesign entire care experiences for all patients.


This post originally appeared in NEJM Catalyst on September 21, 2016.

Call for submissions:

Now inviting expert articles, longform articles, and case studies for peer review


A weekly email newsletter featuring the latest actionable ideas and practical innovations from NEJM Catalyst.

Learn More »

More From Patient Engagement
Jethwani01_pullquote2 patient empowerment

Who Gives Us the Right to “Empower” Patients?

And if we are not truly empowering patients, what exactly should we be striving for?

Patients Welcome IV Self-Care; Physicians Hesitate

Parkland Hospital examines barriers to acceptance of a program that teaches uninsured patients to deliver IV antibiotics at home.

Patient Experience: From Consumer to Patient and All That Comes in Between

The Digital Experience Must Also Be a Human(e) Experience

The most humane experiences happen when we meet patients where they are by designing the types of touch points they want and need.

Hawaii Pacific Health Physician Checklist: Creating a Healing Experience

Transforming the Patient Experience Through the Power of Ritual

Ritual is in fact a primitive checklist: a series of steps that create safety and trust between client and caregiver.

Top Three Most Promising Trends to Capture the Patient Voice

Survey Snapshot: Many Different Channels to Hear the Patient Voice

Commentary from NEJM Catalyst Insights Council members on how to capture the patient voice and make hospital staff hear it.

Empowering Patients Empowers Providers

Why should it be surprising and novel that patient-reported outcomes have such power?

Patient-Reported Outcomes for Shared Decision-Making

Making Patients and Doctors Happier — The Potential of Patient-Reported Outcomes

PRO collection is not only feasible and good for clinical care, but it also may enhance physician satisfaction and prevent burnout.

Patient Voice Roundtable Group

Insights Roundtable Report: Measuring What Matters and Capturing the Patient Voice

From a roundtable discussion and NEJM Catalyst survey, a framework for defining the patient voice and integrating it into care delivery.

A Patient and Family Advisory Council (PFAC) for Quality

A Patient and Family Advisory Council for Quality: Making Its Voice Heard at Memorial Sloan Kettering Cancer Center

Though PFAC models abound, metrics on best practices are lacking. One prominent hospital may have found the answer: let those who are the experts at being patients and caregivers lead the way.

Digital Health: USC Virtual Care Clinic

Digital Technology to Engage Patients: Ensuring Access for All

To ensure that we engage the patient groups who have much to gain from the more flexible health care interactions that digital innovation can provide, we must consider issues of computer literacy, access, and trust.


A weekly email newsletter featuring the latest actionable ideas and practical innovations from NEJM Catalyst.

Learn More »


Patient-Centered Care

282 Articles

Assessing and Addressing Social Needs in…

Lincoln Community Health Center improved care quality by measuring and responding to upstream social and…

Patient Incentives

75 Articles

Taxonomy of the Patient Voice

While health care pursues the important trend of putting patients at the center of care,…

Information Asymmetry: The Untapped Value of…

The knowledge and preferences that patients could — and should — share with clinicians would…

Insights Council

Have a voice. Join other health care leaders effecting change, shaping tomorrow.

Apply Now