Understanding patients’ lives leads to everyone’s goals
By Kathleen Starr, Ph.D., Managing Director, Behavioral Insights, inVentiv Health Commercial
Healthcare companies and consumers are being held to greater levels of accountability than ever before for health outcomes. Third-party payers routinely scrutinize outcomes when making decisions on access and reimbursement. Competitors point to outcomes when differentiating value. Consumers are being told that they are largely responsible for their own health outcomes and must now do more than simply take their medicine-they must make serious lifestyle changes, such as eating better and exercising more. But the best outcomes often depend on changing habits and behaviors that are hard to change, even briefly, and many of the required changes must be sustained over years.
The pharmaceutical industry recognizes that consumer behavior is a key to both better individual health outcomes and greater business success, and has created a wide range of programs to engage and support patients who are taking prescribed medication. Patient needs, desires, and interests have become the focus of a sweeping movement toward greater patient-centricity at every stage-from drug development through launch and adherence-all designed to improve outcomes.
But life is messy. And helping people make and sustain behavior change, and engaging patients as they want to be engaged, means working within this context of messy lives.
For instance, we spend millions of dollars promoting medication adherence by empowering patients with information about their medicine. Yet, it is well known that up to 30% of patients with chronic conditions don’t even fill their first prescription. Of those patients who do get to the pharmacy that first time, another 30% fall off their medication within 30 days, and up to 60% stop taking their prescriptions within six months.1,2The result: increased illness, sometimes leading to death, and nearly $300 billion lost in additional avoidable medical spending each year.3
To enhance engagement and improve outcomes, the pharmaceutical industry now must move beyond the standard patient-centric approach that focuses on individual knowledge and motivation. We must now take a “social-centric” approach that takes into account the differing contexts that shape individual behavior.
Whether working to develop a new drug, launch a product, or increase medication adherence, taking a social-centric approach will have enormous value in positively impacting the complex interaction of factors that impede patient behavior change. This new approach has been validated by our own ethnographic research that revealed how the social context of everyday life creates a bumpy road for behavior change.
By understanding the obstacles in a deep and detailed way, we are able to create social-centric programs with a far higher probability of success. This paper explores some of the key elements of social-centricity.
IDENTIFYING REAL-LIFE INFLUENCES OF HEALTH BEHAVIOR
Health in America, a recent ethnographic study completed by Behavioral Insights, a strategic solution within inVentiv Health Communications, suggests new ways to promote sustained change by leveraging the contributing influences of the family, the healthcare system, and society. This extensive study, conducted in two phases over two years, took us into 30 patient homes to observe behaviors as they unfolded over time and social patterns of influence that could be harnessed for positive change.
Our observations “in the wild” allowed us to gather data on actual patient lives, which, when combined with our expertise in behavioral science, provided insights that cannot be gathered through any survey, interview, or literature review.
Over the course of our research, we witnessed job changes, unexpected medical bills, family members moving in and out of a household, and even one patient dying. In the midst of near constant change, families dealt with medical issues from diabetes and mental illness to infertility and cancer. Our research brought into focus how and why programs that are “one-size-fits-all” and designed for an “ideal” social context are bound to have limited impact.
Participants in our research represented a wide range of ages, socio-economic backgrounds, and illnesses. They included families with small children and teen-agers, empty nesters, families deeply engaged in caring for elderly parents, as well as families relatively isolated with no relatives nearby. They lived in Portland, Kansas City, Shreveport, and Boston, providing a look at differences by region.
Every quarter, we visited families in their homes to allow researchers an intimate look at family dynamics and typical routines-carpools, snack and meal preparation, as well as paying bills. Between visits, our participants recorded video diaries that captured daily habits such as blood glucose monitoring and exercise sessions, as well as unexpected events, such as trips to emergency rooms. More than 600 hours of video was collected and analyzed for the study.
This study gave us a real-life view of three primary forces within the social environment that have the greatest impact on patient behavior: the family, the healthcare system, and American culture.
HEALTHY BEHAVIORS CAN BE SWEPT AWAY BY THE REALITY OF TODAY’S FAMILY LIFE
Even families devoted to healthy living were not immune from the impact of a lack of structure. An absence of predictability in daily life often translated into weekly or daily variations in attention to healthy behavior changes. We observed individuals often struggling to consistently manage a chronic condition when faced with the many twists and turns of the modern family. And when healthy patterns did emerge, such as preparing healthy snacks for work or monitoring blood glucose, the behavior tended to be short-lived because of needing to focus on family.
This study gave us a real-life view of three primary forces within the social environment that have the greatest impact on patient behavior: the family, the healthcare system, and American culture.
But not all the impacts of constant change were negative. We observed that big family disruptions, such as a move, a new job, or summer vacation, often prompted individuals into positive action. For example, people restarted a vegetarian diet, limited their TV time, and resumed adhering to medications.
The social-centric view of the American family shows us that maintaining any type of healthy behavior often falls victim to a circle of constant interruptions and the hectic pace of daily life. Given this reality, we observed that even additional “minor” health-related problems can be overwhelming for a family, further promoting the cycle of disruption.
THE NEEDS OF FAMILY SYSTEMS ARE MORE POWERFUL THAN INDIVIDUAL INTENTIONS
All of our participants had health concerns they intended to address. The intentions changed, however, based on the needs of other family members. In fact, families are made up of lots of “patients” with health issues that arise at one time or another and require attention. The health issues don’t always require professional help, but they do pull time from other family members. This creates a situation of “patient-of-the-day,” where the focus of attention to health and priorities constantly shifts to whoever has the greatest perceived health need. As a result, we saw that family members with chronic conditions often had an easier time giving priority to their own health goals when their health issues became full-blown “problems,” such as a new diagnosis or change of medication.
Acute conditions, such as the flu, bronchitis, and broken bones, trumped chronic conditions. Attending to the health and medical needs of children took priority over adults. Parents had a more preventive mindset when it came to children than they had concerning themselves. They often fretted about how medical decisions today might impact a child’s health later in life, but adults didn’t take the same “long view” of their own health behavior. They tended to emotionally minimize their own health risk and prioritize their responsibilities as a parent, caregiver, or breadwinner rather than patient.
Families are made up of lots of “patients” with health issues that arise at one time or another. [They] don’t always require professional help, but they do pull time from other family members. This creates a situation of “patient-of-the-day,” where the focus of attention constantly shifts to whoever has the greatest perceived health need.
American family life is extremely kid-centric, with decisions often dictated by the wants and desires of the children. As a result, family activities are geared towards accommodating the schedules of children, and food choices often are dictated by likes and dislikes of the younger family members. The happiness of children strongly influences decisions that adults make about their own health.
We also observed families constantly reallocating and prioritizing time and money based on the needs of the family unit as a whole. For example, the need for testing strips and their cost were weighed against how these purchases impacted a family budget. Families calculated health-related costs against other priorities, such as entertainment or even groceries.
Taking a social-centric approach to considering patient behavior helps generate awareness and, possibly, empathy. We can understand that in pushing patients toward certain behaviors-from paying for a prescription to taking time off work for treatment-we may be putting them in an untenable position, and possibly at odds with family expectations.
Understanding the family dynamic can help us find new ways to encourage patients toward healthier behaviors while still feeling positive and in control of a family’s multiple, shifting priorities.
WHERE ARE PATIENTSGETTING THEIR HEALTH INFORMATION?
The healthcare system is made up of many stakeholders trying to influence patient behavior. The obvious stakeholders, such as drug manufacturers, providers and insurance companies, all have business motivations for weighing in on decisions regarding diagnosis and treatment. But our study revealed influences coming from unexpected sources, as well.
For example, we saw teachers and school officials sharing their expert opinions on ADHD treatment. Employers are offering health screenings, weight loss, and healthy eating programs, gym memberships, and health coaches- with employees rewarded for taking part and penalized for nonparticipation.
Participants looked for opinions and counsel not only from their physicians, but also from acupuncturists and massage therapists, grocery store dieticians and pharmacists, from celebrities, such as Dr. Oz, and from friends, or even strangers.
Moreover, Americans seem to be inviting even more influencers into the decision-making mix. In our study, participants looked for opinions and counsel not only from their physicians, but also from acupuncturists and massage therapists. They took counsel from grocery store dieticians and pharmacists. They got recommendations from celebrities, such as Dr. Oz, and from friends, or even strangers, who shared experiences online and off. The expansion of the social network was not just on lifestyle subjects such as weight loss, but also on the management of diseases and conditions such as Crohn’s disease, depression, and asthma. Meanwhile, there often was little thought given to telling physicians what they have learned or tried and so no health professional had insight into the decisions being made.
CONFLICTING ADVICE LEADS TO CONFUSION
In short, they are caught in a healthcare system riddled with conflicting messages. Nearly everyone in the study struggled, at one time or another, to reconcile a physician’s treatment recommendations and the treatment actually covered by their insurance plans. The messages on the right course of treatment often conflicted.
Participants particularly struggled with implementing wellness and prevention recommendations. When it comes to preventing illness, the do’s and don’ts seem to be in constant flux. An employer might subsidize gym memberships, but not yoga classes. Participants might be eligible for an employer discount to Weight Watchers, but their insurance plan wouldn’t cover a medically supervised weight loss plan prescribed by a physician.
Even within the confines of a physician’s office, diagnosis and treatment information are not always as clear as we might imagine. Many study participants spoke of having multiple diagnoses and how the ideal treatment for one condition might contradict treatment for another.
Participants also struggled to make sense of diagnostic definitions and changing treatment guidelines. Such basic questions as “Am I diabetic or not?” and “Do I start medication now or wait to see if losing 10 pounds makes a difference?” received conflicting answers. Such dissonance led to questions of trust among participants who questioned the motives and influence of the healthcare industry. “Who do I believe?” “Who is looking out for me?”
With so many sources of information available, study participants still wanted and felt they needed a trusted physician to help them effectively manage their health. They are looking for providers who “know” them -their health status, values, and competing demands. The hallmark of nearly all of the positive doctor-patient relationships in our study was compassion and a genuine interest in the patient’s life.
But the study showed how difficult it is to get what they want. For example, a single chronic condition may require the opinion and care of several specialties, and no single provider seems to be in charge, acting as a trusted center of care and keeping track of all information. Beyond the structural obstacles, there were matters of individual quality of care. Trust is built on communication and our study revealed that communication with physicians is a big part of how participants measured quality. It was the area where they felt least satisfied.
Trust is built on communication and our study revealed that communication with physicians is a big part of how participants measured quality. It was the area where they felt least satisfied.
One obvious issue is that providers and patients don’t speak the same language. Healthcare providers talk in percentages, statistics, and risks, while patients think in terms of value in their day-to-day life. While providers track objective measures like weight or blood pressure, individuals measure health by how well they can take care of themselves, their ability to interact with their family, and their ability to work. Participants often felt that communication was one directional with healthcare providers talking a lot but failing to listen and deliver what they needed. Patients want their healthcare providers to listen and offer feedback on what they are actually doing to manage their health.
THEY NEED OUR HELP. HERE’S HOW TO PROVIDE IT.
Taking a “social-centric” view brings into focus the extent to which the healthcare system itself sets up patients to fail. Understanding the social context enables stakeholders to begin coordinating and connecting messages and actions in a meaningful language that enhances trust and mitigates the very real possibility that patients will eventually tune us out altogether.
Ultimately, the healthcare industry may need to work with other industries, institutions, and stakeholders to help change social norms and make healthy living easier. More immediately, viewing patient behavior within the wider social context will further our understanding that patients are not merely “lazy” or “lacking in willpower” but are under enormous societal pressures to do the unhealthy thing.
Understanding the forces of social-centricity allows us to deploy strategies that fit in better and work far more effectively within the realities of life. Focusing on the wider social context also allows us to “peel the onion” to reveal a deeper set of patient needs that industry has yet to address. This single study revealed new opportunities for us to:
- Reduce the friction that managing health can cause by supporting the entire family system
- Rebuild trust in the healthcare system by educating physicians and other stakeholders on how to talk with patients in the language of family needs and social values
- Reframe healthy living so that it is no longer considered “work” but rather part of being “plugged in” to what really matters-family, work, personal well-being
- Increase our impact by developing coordinated and connected messages that can be delivered by various healthcare providers during contact with patients at different points in time
- Stop pushing patients down a linear path toward behavior change and instead create solutions that help patients and families build the resiliency needed to routinely restart efforts toward better health
HOW DO WE ACCOMPLISH THIS? FOUR KEY ACTIONS THAT WILL GET US A LONG WAY TO THE GOAL:
Bring a social-centric view to claims data analysis, so brand managers get the full picture on pharmacy costs of patients before badgering them on medication compliance. That inexpensive $10 copay the brand company considers to be such a minor cost for patients is, in fact, just a tiny fragment of what patients with comor-bidities actually spend each month at the pharmacy. Claims data analysis through a social-centricity lens would tell the brand owner the average monthly costs faced by patients/health plan members in a particular demographic or geographic area. Today, most brands aren’t mining such data to learn what percent of monthly household spending those pharmacy bills represent to the average family, and where the brand’s co-pay fits into the bigger picture.
Incorporate social-centricity regimens into primary care settings, so doctors know what’s going on in the patients’ lives, and patients know that doctors actually care. These regimens don’t have to be anything elaborate. It could be just a 5-item questionnaire asking such things as: Has there been a recent death in the family? Are there serious difficulties at work, either for you or your spouse? Are your children doing okay in school? Based on the answers to the questions, a doctor, nurse or administrator would conduct a 10-minute interview eliciting a bit more information, if that’s necessary. One purpose is to assure the patient that the medical practitioners understands trade-offs the patient is juggling, and may be able to help prioritize medications or provide advice on patient support programs.
Take a page from successful health-and-wellness public service campaigns-the kinds of multi-platform messages designed to curb smoking, promote safe sex, improve hygiene and promote road safety. Social-centricity research tells us the different cultures that form America’s social fabric feel differently about healthcare institutions, authorities and practices. Use multicultural clues derived from social-centric research to target DTC messages, allowing African American, Hispanic, Indian or Chinese-American populations to get brand-related information that resonates with them.
Use socially-centric insights to make artificial intelligence algorithms smarter and more sensitive. Left to its own devices, the AI software is going to act on marketing priorities with a blind eye to cultural values. Most famous 2012 example: Based on recent purchases, Target’s marketing algorithm sent coupons for baby clothes to the mailbox of a Minneapolis family. The head of the household-the father of a teenage daughter-was outraged. He didn’t know his daughter was having sex, let alone that she was pregnant. The algorithm is just doing its job. What’s missing is a socially-centric view of social/cultural contexts that informs algorithmic logic and kicks in before marketing AI does any damage.
Taking a social-centric approach changes everything. It leads, inevitably, to an understanding that a medical risk, or even a diagnosed condition, may not be the primary driver in patient behavior. People live within social environments that often override individual needs, intentions, and attempts to change. Social forces create a very bumpy road for patients, whether they are trying to stay healthy or manage a serious condition.
Rooting patient engagement solutions in a social-centric approach requires that we move past delivering information as if consumers were focused only on their individual health. Social-centricity tells us to stop planning communication touch points as if patient behavior followed a neat marketing funnel. It challenges us to leverage all the factors influencing behavior-the family, the healthcare system, society, and more-to toward more effective patient engagement.
Taking such an approach ultimately leads us to a host of opportunities, strategies, and tactics that will be far more successful at achieving a healthier end. And that’s good for everyone, including healthcare businesses, patients, and the social environment in which we live.
Kathleen leads a cross-functional team at inVentiv to translate deep insights and the science of behavior change into health communications that drive behavior to advance healthcare clients’ business objectives. She sets strategic direction for proprietary thought leadership initiatives to advance innovation and the development of service offerings, and collaborates across business lines to identify, prioritize, and amplify new business growth opportunities. She has also been managing director and SVP of the behavioral insights group at Adheris Health, an inVentiv company, and principal of Starr Health Strategy Group.
inVentiv Health is a global, top-tier, clinical and commercial professional services company that combines the best strategic brains in the biopharmaceutical industry with the latest technologies, eliminating the roadblocks, territories, fences, hand-offs and gaps that can hinder the efficiency and speed at which products are brought to the marketplace. It has more than 15,000 healthcare professionals servicing clients in 90 countries, and has helped to develop or commercialize 80 percent of all new drugs approved by the FDA and 70 percent approved by the EMA over the last five years.1 Primary Medication Non-Adherence: Analysis of 195,930 Electronic Prescriptions: J Gen Intern Med. 2010 Apr; 25(4): 284-290.2 Ready for Pick-Up: Reducing Primary Medication Non-Adherence. A New Prescription for Health Care Improvement. A NEHI Issue Brief.October 2014. www.nehi.net/writable/publicationfiles/file/pmn_issue_brief_10_14_formatted_final.pdf. AccessedJuly 25,2016.3 Medication Non-Adherence: A $290 Billion Unnecessary Expenditure. The HealthWorks Collective, Posted April 13, 2015. www.healthworkscollective.com/ashishvarshneya/300471/medication-non-adherence-290-billion-unnecessary-expenditure. AccessedJuly11,2016.