PM360 asked experts in improving the patient experience to address key issues the industry should know about in 2018, including:
- How can pharma better partner with patients to help offer an improved experience? What are the keys to developing a trusting relationship between patient partners and pharma?
- What areas along the patient journey are most in need of improvement in terms of how pharma interacts with patients? What can the industry do to improve these areas?
- How must patient engagement strategies change in the age of more empowered and informed patients? How can pharma better meet patients’ rising expectations in a timelier matter?
- What examples of services, offerings, programs, etc. have you seen pharma offer that has really elevated the patient experience and is worth emulating?
Along with addressing patients’ unmet medical needs, we must also address their unmet need to be heard. This idea inspired our Through the Eyes of the Patient program, which included experiential pilots to help our employees understand what it’s like to have conditions such as overactive bladder (OAB) or hot flashes (vasomotor symptoms, or VMS), among others. These efforts can help to inform a patient-first approach to drug development and services developed to support patients.
For example, we piloted a program to help employees understand the impact of VMS. We asked women with VMS to record videos of themselves over two days as they were impacted by symptoms to capture their experience in that moment. If a woman suffered from a hot flash at midnight, she would record herself during the experience. That video was later pushed to the Astellas participant at midnight to mimic the condition’s disruptive nature. The insights gleaned increased empathy and helped ensure that these women’s voices could be represented in future development plans.
The effort reflected what we believe are the keys to developing trust between patients and our teams: Empathy, insights, support, respect, authenticity, sharing, and creativity.
It all starts with listening. The only way pharma can be a true partner with patients is by meeting them where they are and listening to their voice in order to co-design solutions that simultaneously improve their experience and the value of our medicines. At Amgen, it is our core belief that when the patient wins, we win, and we are committed to helping every patient win every time by bringing value to their lives and improving their treatment experience along the way.
The key to developing a trusting relationship with patient partners is to engage directly with patients and their caregivers to generate insights and co-create solutions based on their lives, motivations, and concerns. For example, we used learnings captured directly from patients with multiple myeloma to develop new solutions that addressed their feedback. The outcome was a digital offering to help patients track progress and improve their experience through exploring a less burdensome dosing regimen.
Seeing and hearing the impact of a disease and treatment on patients’ lives helps us identify new ways to develop our medicines as we explore how we can bring meaningful improvements and value to them. Direct patient engagement provides a face, a voice, and a purpose to the work we do each day.
As an NFL player for 10 years, I learned the value of trust when it comes to building a winning team. According to Edelman’s annual trust barometer survey, only 38% of Americans say they trust pharma companies—down 13% from last year. If we have any hope of building a winning team with the patients we serve, we simply must reverse that trend.
The Trust Equation illustrates that Trust = Rapport + Reputation + Reliability, DIVIDED by Self-Interest. No matter how hard we work to improve our reputation or increase our reliability, if patients perceive pharma companies as driven only by self-interest, it will be impossible to earn their trust.
We can strengthen the bond of trust with our patients by: 1) Continuing to do outstanding research, innovating, and developing great products. 2) Including patients in every facet of development from clinical trials to bringing a drug to market. 3) Being transparent with outcomes and taking responsibility when mistakes are made. 4) Showing patients we care by not treating them as a member of a disease state but rather as individuals, speaking to them in culturally appropriate language, and acknowledging their fears while nurturing their hopes.
Most pharmaceutical companies develop what is known as the patient journey, which describes the number of patients at each stage of a disease both before and after treatment.
Yet the majority of their patient promotional efforts are aimed at patients that have already been diagnosed and treated. In reality, the disease journey often begins with patients noticing and being concerned about symptoms.
In a recent Google search (early symptoms of Parkinson’s disease), there was not one posting from a pharmaceutical company. Failing to engage with patients when they are first noticing symptoms and are looking for information as to whether they need to be concerned and/or visit a physician is a significant potential opportunity to build patient trust and it is being missed. Patient centricity needs to start before the physician visit.
Patient retention has a significant opportunity for improvement. It costs pharma 62% more to acquire new patients than to retain the patients they have, according to the IMS Institute for Healthcare Informatics.
One step towards improvement: Following a more “holistic” approach during the critical period from prescribing decision to actual therapy initiation. In the growing specialty market, patients have a gap of often two to four weeks or longer before actually accessing newly prescribed medication. Patients need to understand what they will face during this timeframe in order to keep them engaged with the new therapy.
A Patient Support Program (PSP) that includes a “Welcome Call” conducted within 24 hours of a prescription being written will set patient expectations of what comes next: The multiple calls they will receive, how to access and pay for medication, how they will be trained on self-administration, etc. By preparing patients and addressing their questions upfront, you keep them motivated to actually start their treatment once it is approved and shipped. Otherwise, you risk significant drop off rates.
On-going adherence support and goal setting should also be incorporated to keep patients motivated, ensure their adherence strategy is working, their administration techniques have not slipped, and to support the on-going dialogue with their HCP.
First, we could stop calling them “journeys.” The experience of so many patients today—those with rare, hereditary, life-long, and even some chronic conditions—is not a linear journey, with a beginning and an end. Instead, these patients live their day-to-day lives in the context of an ever-present condition. Understanding that experience, not a limited construct of a journey, is how we can start.
We need to think differently about education. In most cases, people living with rare and life-long conditions could educate us. Understanding what to offer in terms of condition and treatment education and knowing when those resources are needed and valued is essential to creating any kind of impact.
We could shift our focus to supporting resilience, instead of an unrealistic goal of “compliance.” We all know that life gets in the way of doing what we should (think diets). Patients are no different. They may experiment or rebel. They may stop believing they need treatment, have financial issues, or simply forget. We can plan for that, helping them build resilience to bounce back when they inevitably slip.
Most importantly, let’s be authentic. Those living with a rare or life-long condition develop the ability to spot and shut down any effort by industry that is not a truly genuine desire to understand their experience.
The need to hear the patient voice and listen to the patient’s needs is quite clear. But the “beyond the pill” and “patient centricity” responses have become buzzwords with little clear impact. They are well meaning, but not meaningful enough.
Being “patient centric” should mean going well beyond the catchphrase to really understand patient need and what drives patient behavior. For example, we believe that millennial buying behavior will dramatically alter healthcare delivery systems as we know them today. Cost, convenience, and technology are critical elements of the shopping experience for millennials, yet the traditional leaders in health delivery are not actually delivering on these three necessities. Pharma now needs to ensure that all services are tech-enabled, socially connected, and frictionless.
In this new health delivery model, with new players, new market drivers, new technology, and new metrics, pharma companies need to re-examine all their opportunities to deliver value—indeed, well beyond the pill. This means using real-world data and population health tools to help predict clinical issues and design effective interventions as well as offering patients an opportunity to participate in clinical trial design, ensuring that patients’ health needs are truly understood and addressed by the pharmaceutical industry.
The concept of health is changing as consumer expectations are evolving. The modern health consumer presents pharma with an awesome opportunity to sharpen its methods of engagement and build deeper patient connections. A few ways pharma can do so are:
- Go beyond patient centric to truly embrace “patient authentic.” Interactions between pharma companies and patients should feel genuine and accessible. Information doesn’t necessarily equal inspiration, but authenticity very often does. Focusing on real-life scenarios can help brands build patient trust.
- Map the patient journey to the realities of the patient experience and interact with the patient along the way in a very “real” fashion. According to Healthline’s recent research, “The State of Type 2 Diabetes,” there are generational differences in how patients seek new information at a variety of points along the treatment continuum. Having a better understanding of those points can help pharma companies meet patient needs in an effective, timely, and authentic manner.
- Embrace a digital culture. Lean in and build deeper patient connections by engaging online communities and listening to real people. Their stories tell the good, the bad, and the ugly about living with a health condition.
Pharma must commit to engaging patients earlier in drug development, and to keeping them engaged throughout the process. Involving patients as early as clinical trial protocol design ensures that pharma is conducting clinical research that will result in meaningful, beneficial outcomes to the populations they’re aiming to serve, and that they have patients’ buy-in throughout the research process that leads up to commercialization.
Patients are more sophisticated than ever before. Pharma companies should find a way to educate patients on complex topics such as mechanisms of action and give them access to as much information as possible, enabling patients to make informed choices and interact with pharma in a more meaningful way.
Patient engagement needs to be prioritized from bench to bedside, and its intent must be authentically patient centric. Patients should be seen as partners, not customers. Engaging them via advocacy groups and community outreach is both faster and more credible, feels less commercial, and speaks more directly to patients as humans—not subjects or future consumers.
To move the needle on patient experience, brands need to put patients first and meet them where they are both physically and emotionally. Point-of-care campaigns offering information and resources at key touchpoints along the care journey can help patients better understand their condition when they need it most and help them more effectively talk to their doctor to get the right treatment.
Some of the best campaigns we’ve seen leverage real patient stories and testimonials. Patients—especially those dealing with a serious diagnosis—want to know they are not alone and want to hear from someone who knows exactly what they are feeling. Since affordability is a key concern, promoting savings programs can also bring valuable peace of mind. And programs that explain how a drug works in easy-to-understand terms can increase comprehension and adherence.
Simply put, showing empathy and assuring patients that you are a trusted partner in their care—at the point of care—can go a long way toward empowering them to have a better experience.
Some examples of innovative services pharma companies are using to elevate the patient experience include:
Care concierge programs: These programs use Clinical Educators to provide white glove service to patients typically facing a chronic disease via phone, text, and video chat in which health coaching can help them overcome the everyday obstacles that impact their ability to successfully manage therapy.
Therapy recognition programs for patients and their caregivers: Therapy recognition programs celebrate patient successes—from a simple congratulatory email, text, or phone call, to a formal awards program for patients who have reached key milestones on their journey. Whether you are recognizing a personal goal, therapy milestone, or the support of a caregiver, therapy recognition programs celebrate the small wins, provide encouragement, and can make a difference when it matters most.
Real-world insights driving customized program design: Use Clinical Educator engagement on the front lines with patients to capture real-world insights regarding unmet patient needs. More and more, we are collecting these insights to design tailored programs that facilitate a more personalized engagement strategy and result in modular “just in time” content—delivered in 2- to 15-minute increments that flexes to the immediate patient needs.
Biopharmaceutical companies should look to the capabilities of digital healthcare to provide optimal patient experience, adherence, and outcomes.
One key example is a device that can be used on an inhaler for COPD patients. It lets patients know if they used the inhaler properly, resulting in a positive impact on exacerbations and readmissions. Data can be sent directly to the physician for monitoring and appropriate reinforcement or training.
A second example is a wearable device that can be used to measure seizures or movement disorders. When used in infants, seizures can be detected and data transferred to the physician for any changes needed in dose or therapy. This allows for a more robust discussion with the family and the physician and delivers better outcomes for the patient.
A third example is the use of software for depression. This software can be used with or without drug therapy. With many undiagnosed patients, it fills an unmet need and provides patient self-empowerment. Since depression can impact other conditions, an engaging program that is customizable and accessible to these patients improves the patient experience for multiple diseases.