Patient Engagement
Capturing the Patient Voice

Empowering Patients Empowers Providers

Article · November 1, 2017

Adding patient reporting of their symptoms to breast cancer treatment led to overall metastatic cancer survival, reduced emergency rooms visits and hospitalization, and improved quality of life in a recent study. These results surprised attendees at the June meeting of the American Society of Clinical Oncology.

Why should it be surprising and novel that patient-reported outcomes have such power? Patients are the most knowledgeable about their symptoms. We clinicians depend on them to report their symptoms at every visit, although visits can be weeks to months apart. Why not ask them to share what they are experiencing on a weekly basis so that they can obtain symptom relief or other intervention right away? A significant amount of peace of mind is provided to patients when they know they have a direct connection to care providers.

Once the responses are received from patients, actions can be taken to mitigate symptoms or provide resources right away. Patients no longer have to wait for their next appointment to report concerns. Improved communication, satisfaction for both patients and care providers, enhanced quality of life, and increased symptom management and control have all been shown to be benefits of the two-way communication enabled by patient-reported outcome tools. In addition to the reduced time for symptom resolution, this method of information exchange could improve the expediency of data collection regarding symptoms/adverse events needed for clinical trials of cancer treatments — a huge boon to expediting research.

In the study, patients logged into a web-based tool once a week, after receiving electronic reminders. The median age of the participants was 61 years, a little more than half were female, and most were Caucasian. Some participants had prior computer skills, some learned them specifically for the study. A team of nurses managed the responses from patients.

Are we neglectful by not providing this type of real-time care when the technology exists and we have evidence that there is benefit? Would patients call the clinic with one or two of the symptoms that they are experiencing? Probably not, but through this online mechanism they can transmit all of their concerns about their health. This type of electronic communication meets the Triple Aim of the Institute for Healthcare Improvement: better, timely, cost–effective, patient-focused care.

When you think about the cost of onsite care, you must consider all of the costs; bricks and mortar, infrastructure, check in, rooming, check out, billing. Then, there are the patient costs: travel time, parking, disruption of their day. Of course, patients will need to come in for a traditional office visit occasionally, but the availability of appointments for newly diagnosed cancer patients would be greatly improved. In the community-based cancer institute where I currently work, this is always a significant struggle. The oncologists’ schedules are primarily filled with follow-up appointments for those who completed treatment at least 2 years ago and, in some cases, 20 years ago. Therefore, appointments for the newly diagnosed are often scarce.

Between 2010 and 2011, a study on symptom management and behavior reporting was conducted among breast cancer patients, stages I, II, or III, who had completed their treatment. They received a pre-programmed email link that was set to go out at timed intervals with survey questions. When they responded, an email went to the assigned nurse practitioner, who could then review the survey report and intervene in real time: call the patient to get more information, phone in a prescription, order a lab test or x-ray, and/or get them into the clinic that same day. The findings from this study showed a positive correlation between patients reporting their symptoms and timely intervention and management, providing evidence that patients reported more symptoms through the online survey than they did at clinical visits. The initial research for this study began in 2006 when the questionnaire platform was created. At that time, the technology had to be developed from the ground up — an expensive undertaking. Now, this is not the case. There are many free and low-cost tools available, such as the one used by Basch, et al., in their research, Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events.

Patient reporting is a real contributor to patient-centered care. When discussions about patient engagement and consumer loyalty come about, routine patient involvement through reporting should be examined as ways to achieve hospital system goals. If patients are receiving weekly reminders about reporting and submitting their data routinely, they are reminded about the medical center/cancer center in positive ways. Primarily, they feel connected, even if it is electronically. Those who may not believe that the majority of patients are connected through computers, tablets, and/or smart phones have little ground to stand on these days. I know many septo- and octogenarians who are active on their devices many times a day, and we are well aware that anyone under 30 is constantly online. Connectivity is a basic element of daily life these days. If your question is, “Will patients respond to communication asking them to report symptoms?” the answer is, evidently, “Yes”.

In this era of patient-centered care and motivation toward high-quality care, active implementation of patient-reported outcome tools (whether on the Internet, automated phone systems, or a phone app) is a logical next step toward achieving these goals. Routinization of this type of two-way communication can only serve to improve care in the ways that we are all trying to win at carrying out the Triple Aim’s design.

New Call for Submissions ­to NEJM Catalyst

Connect

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

Learn More »

More From Patient Engagement

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.

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.

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.

PROMS: Total Knee Replacement - Relief from Knee Pain

Implementing Patient-Reported Outcome Measures

PROMs pioneer shares what’s working in a large health system. Make it easy, make it fast, make it relevant.

Connect

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

Learn More »

Topics

Patient-Centered Care

225 Articles

Leveling the Clinician-Patient Playing Field

Concrete examples of leveling the playing field between clinicians and patients to enable shared decision-making.

Patient Incentives

63 Articles

Toward Better Health: Choice Architecture vs.…

When should clinicians and health systems promote hard work to achieve health versus looking for…

Ensuring Clinical Quality in Telemedicine

How Cleveland Clinic and Online Care Group designed a data-driven quality improvement telemedicine ecosystem.

Insights Council

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

Apply Now