Who's Really at the Center? What We Can Learn From Caregivers—The Missing Link to Patient Centricity

There are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.
-Rosalynn Carter

Their numbers are staggering. Their situations diverse. And their influence surprising. They are caregivers, the estimated 43.5 million people who provide unpaid care to adults who are infirm, disabled or unwell. And this number may very well be higher.

On average, caregivers devote 41 hours each week to providing care—a commitment that’s equivalent to a full-time job. They’re rarely paid for their labors, but the value of what they do is enormous both in human and financial terms.

The financial value of their work, if they were paid as professionals, is prodigious. In 2013, it was valued at $470 billion annually which is nearly as much as the yearly sales from the world’s largest company, Wal-Mart. These caregiver statistics date from five years ago, and, of course, are bound to be significantly higher today.

_{^{*National Alliance for Caregiving and AARP, “Caregiving in the US,” 2015.}}

Caregivers are an integral part of the care team and are involved in everything from medication choice to adherence strategy. Yet, they’ve often been an afterthought for life sciences companies, even as the industry focuses on patient centricity.

As an industry, we’ve been making our approach to research and development—and to marketing—all about patient centricity, which is another way of saying “inclusion.” But, here’s where we’ve been mistaken.

It’s not just patient centricity. It’s patient empathy. And by extension, caregiver empathy. If we want to be more patient-centric, we have to know how the patient FEELS. Very few people understand empathy more than caregivers.

Do we really know how it feels to be a patient? To suffer from a condition that requires a full-time caregiver? We think we know, but we don’t. In fact, patients have indicated as much. Nearly one-third of patients wish their doctors had a true sense of empathy for their condition. And if patients don’t feel that their doctors, who see them face-to-face and specialize in their condition, are empathetic, what must they think of the life sciences industry?

We can answer that by looking at patients’ degree of trust in the industry, given that there’s a direct connection between empathy and trust. If you don’t empathize with your audience, you lack a foundation upon which to build trust. Unfortunately, according to a Harris Poll, only nine percent of U.S. consumers believe that pharmaceutical and biotech companies put patients over profits. The conclusion? Patients perceive a lack of empathy on the part of the industry and this fuels widespread mistrust.

So, we try to change behavior, but can’t. We have a hard time getting traction when it comes to patient engagement, exploring treatment options and research opportunities, and adhering to treatment regimens.

AT THE MOMENT, THE INDUSTRY SUFFERS FROM A PERCEIVED EMPATHY GAP WITH PATIENTS. That shakes patient trust in companies and impedes efforts to impact behavior and go beyond lip service to realize patient centricity.

Do we really know how it feels to be a caregiver? To serve as nurse, guardian, assistant, therapist, babysitter, maid, chef, advisor, and on and on?

On the whole, caregivers do feel understood. We asked caregivers if they were satisfied with how well their needs were understood by various parts of the healthcare industry.

The relevance of a message is tied not only to a person’s external circumstances, but also to his or her personality and mindset. Even if two people share the same circumstances, there’s no guarantee that a message will be equally relevant to them both.

For instance, we may, not unreasonably, assume that two people, each caring for a parent with dementia, are both stressed. So, we develop messaging that attempts to identify with them on the dimension of stress. But it falls flat. Why?

Well, for one thing, the concept that caregivers are likely stressed is hardly an original thought. And for another, the amount of stress a person feels is a function of their resilience and personal traits, and not always a function of the type of caregiving work they do. The more grounded and centered that caregivers are, with a strong internal locus of control, the less stress they tend to feel about caregiving as well as other dimensions of their lives, from financial matters to sexual fulfillment.

Just a few quotes from caregivers illustrate how different their reactions to stress can be—responses range from rage to weariness to despair.

When we convey words and pictures, we think we’re being clear, but the signal gets scrambled in transmission. We need to ensure that what people hear is what we meant to convey.

In a digital-first world with shrinking attention spans, there is a tendency to communicate in imagery, letting the visuals convey our message. The problem with this is that it creates incomplete storytelling. When we don’t include context around the image, or we don’t include explicit messages and calls to action, it leaves a lot of room for interpretation and our intended message gets completely lost.

Case in point: When asked what they saw in a photo of a woman silhouetted on a beach, her head down, survey respondents gave a variety of responses. Their descriptions help explain the varying dimensions of stress, ranging from worry, despair, and traditional assumptions such as not finding time for yourself, to more internalized manifestations such as feeling lonely and hopeless. Most of the caregivers’ responses fall on the personal end of the spectrum, where they are interpreting the image as it is relevant to their context.

People interpret messages differently according to their personal context. This is often a difficult idea to accept, given the time and effort that marketers and communications professionals invest in crafting the right brand message.

But, the reality is that when people hear it, see it and experience it, they’ll almost immediately and subconsciously impose their own context and meaning onto that message. To explore this concept, we asked our survey respondents to select a picture from among several that to them represented caregiving. About 20 percent selected a photo of a young woman assisting an older woman with a walker. We then asked respondents to describe what they saw in the picture and compared the answers of caregivers to those from non-caregivers.

Non-caregivers gave a superficial, very literal report of what they were seeing; caregivers on the other hand, read more emotion into what they saw and projected their experience onto the imagery. For them, the image evoked feelings of their own caregiving experience. So, their responses are quite telling in terms of their reality.

Think of caregivers’ voices as being small, but mighty. They can be quite influential with others—from the patients for whom they care to friends and family and even other caregivers.

The fact is, caregivers’ opinions matter. Caregivers often have authority in both transactional and longitudinal care decisions, as our research revealed.

Caregivers demonstrate an altruistic desire to help others, and so their influence extends beyond the care recipient to other caregivers. We asked survey participants if they had “ever shared, posted or published on social media a post or video” to voice their opinion on treatments, providers, and insurers or to discuss caregiving. Their positive responses, ranging from 41.3 percent to 46.2 percent, indicate that caregivers are of the mindset that “sharing is caring.” They actively warn others and use social media to both learn and teach.

We divided caregivers into high- and low-decision influence groups. High-influence caregivers are almost twice as likely to be employed full time as their low-influence counterparts and are twice as likely to have been in their caregiver role for six to ten years (as opposed to one to two years).

We asked caregivers about the type of information that they need and where they go for information. Their answers differ by segment and show that caregivers’ needs are not at all limited to the medical aspects of caregiving.

It’s important to know that whether a caregiver has high- or low-influence depends on where the patient is in their journey. Over time, caregivers tend to move somewhat fluidly between these two groupings depending on the needs and situation of the patient.

Caregivers are many things. Nurses, guardians, assistants, therapists, babysitters, maids, chefs, and advisors. As such, they wield a great deal of influence and are frequently involved in care decisions both large and small along the patient journey.

Communicating with caregivers should be elevated to a strategic focus for sponsors and manufacturers. Communication planning must consider the fact that even when caregivers share the same general circumstances, they will likely react differently to their situation and to messaging. Thus, effective communication with caregivers requires a deep understanding of their mindset and motivational style in order to be authentic and empathetic.

We believe that empathy with patients and caregivers should become the mantra of the life sciences industry. The difference between patient centricity and patient empathy is nuanced, but significant.