The role of patients is changing as healthcare digitalizes. nuviun's Jenn Lonzer discusses 7 different meanings for the term "patient" in a changing healthcare landscape.
Driving home from a business trip last week I saw this billboard:
There must have been more than 10 of them, spaced closely enough that they caught my eye. The advertisement’s message just didn’t sit right with me. It's a nice sentiment about healing and resiliency, but children aren’t EITHER children OR patients. Healthy or ill, it seems to me that they are always children.
Healthcare professionals may sometimes forget that patients are people too. In a blog post called Patients Are People Too, Juliana Preston, MPA, Executive Director of HealthInsight Utah, said: “a patient's health care isn't at the center of their universe. And if it is, then we have failed; we have taken the care out of health care.”
So what, then, is a patient in a changing healthcare landscape? As healthcare becomes increasingly digitalized, how has (or should) the role of the patient changed or be changed? What does it mean to be a patient?
As a noun, the term patient refers to a person who is under medical care or treatment. In its archaic form, the noun means a sufferer or victim. Patients, as we’ve come to know them in what seems to be fairly paternalistic medicine, are recipients of care. Patients get sick or injured and doctors fix them. While I have every respect for physicians (I even married one), this age of passivity has to come to an end. It is costing all of us a lot of money—and health. It gives insurance companies, policy makers, and medical institutions an easy scapegoat (i.e., the patient) when things go wrong. And, in medicine and life, things often do go wrong.
ePatient Dave notes the need for a “new scientific approach to understanding the role of the patient.” In my opinion, patients have many roles at any given time—for better or worse.
1. Patients are data points.
Thanks to medical advances like electronic medical records (EMRs) and the popularity of wearables and sensors, patients are sources of biomedical information that may improve their care and help inform the care of others in the population.
2. Patients are research subjects.
When it comes to complex or chronic health issues, many want to be. When asked how willing they would be to participate in clinical trials, most patients (87%) said they would be somewhat willing (37%) or very willing (50%) to do so. Of those who do participate in clinical trials, an overwhelming 95% would be willing to do so again, according to a study conducted by The Center for Information and Study on Clinical Research Participation.
3. Patients are metrics.
Yes, those patient surveys matter to doctors—a lot. Physicians, group practices, and hospital systems are increasingly concerned with patient engagement and patient satisfaction metrics, in part because their level of reimbursement depends on it. The Beryl Institute defines patient experience as:
The sum of all interactions, shaped by an organization's culture, that influence patient perceptions across the continuum of care.
While interest in patient engagement and satisfaction seems pro-patient, better care (according to patient perception) doesn’t always mean patients live longer. According to an article in The Atlantic, patients who report being the most satisfied “were significantly more likely to die in the next four years.”
4. Patients are caregivers.
Whether doctors, nurses, parents, significant others, or children, at some point all of us become caregivers. The reverse is also true: doctors are patients.
5. Patients are curious about their health.
According to the US Department of Health and Human Services, only 12 percent of patients have health literacy levels that are deemed proficient. Although patients may not be able to understand the health information they find online, the desire for certainty in the face of suffering leads us to find answers when it’s convenient for us. Some physicians fear that what we find on the Internet may make us less compliant; however, a study published recently in the Journal of Medical Internet Research found that physician quality had the greatest impact on patient compliance compared to the impact of online health information.
6. Patients are (or can be or should be) partners in their own health.
Patients are consumers of care—they are customers. But, if we’re really concerned about whole health, patients must also be decision-makers. According to Dr. William E. Lower, one of the four founders of the Cleveland Clinic, “the patient is the most important person in our institution.”
We are partners. I will make errors and I expect to be corrected. Sometimes I'll fail to communicate something to you properly. I appreciate it when you stop me and ask for clarification. It is so much easier to clear up miscommunications in the moment instead of trying to clear them up down the road when they've caused problems.
I also expect to be disagreed with. You've hired me for my opinion. My job is to give it. If you disagree with my opinion, it's my obligation to clarify what that disagreement is.
Faster Cures, a Milken Institute center focused on removing barriers to medical progress, believes :
No longer just passengers, patients are co-pilots, helping navigate the future of medical progress.
Faster Cures created this fabulous video about patients' historical roles and how they are changing.
7. Patients are whole people.
Not just one particular illness or symptom, patients are mothers, brothers, dog or cat lovers, teachers, students, artists. They are leaders, and followers. They cook and clean, eat, sleep, and love.
We are all patients.
The nuviun blog is intended to contribute to discussion and stimulate debate on important issues in global digital health. The views are solely those of the author.