The Reciprocal Value of Patient and Caregiver Support Programs

Articles & White Papers published on December 18, 2019 in Support Services

The recent proliferation of patient and caregiver support programs is being driven by greater patient involvement in health decisions, increasing attention on patient outcomes, and the growth of specialty drugs that require additional patient support. These programs encompass a range of services which enable pharmaceutical companies to improve access to, usage of, and adherence to prescription drug treatments.

Crafting a successful program can also differentiate a brand by providing a supportive experience for its customers, who also include health care providers, since a support program essentially acts as an extension of their care.

However, they can be costly to design, implement, and operate. And because they’re a relatively recent innovation, many pharmaceutical companies lack the understanding to manage the various components and cultivate the ideal patient experience.

While the prospect of designing a support program can be daunting, meticulously considering the market, product, and patient needs will provide the infrastructure to both maximize the return and deliver the desired patient experience.

Exploring the Benefits from Each Stakeholder’s Perspective

Patients and Caregivers

The prescription drug market has evolved in recent years, with large, widely-recognized pharmaceuticals giving way to a new generation of specialty drugs that treat fairly rare types of cancers and autoimmune diseases. In fact, most of the therapies entering the market today target less than one percent of the American population. And nearly half of the 100 top-selling drugs in the United States serve 100,000 patients or fewer.1

It can be difficult for patients to access these drugs. Health care providers may not consider their patients to be viable candidates and choose not to inform them about the drug, or they may not perceive much differentiation among brands. Gaining authorization from the patient’s insurance provider can also often be a hurdle. Even once they’re prescribed, these specialty drugs often come at a higher out-of-pocket cost, requiring the patient to seek financial assistance. And they may need help administering and adhering to them because the protocols can be complex and the side effects, crippling.

Due to the shortcomings of health care coverage for many Americans, more patients are assuming a larger portion of the cost of their health care, which incentivizes the need to be more involved in their care. With the wealth of resources online, patients are arriving for their health care appointments informed and motivated to improve their health.

Support programs can serve as a one-stop solution for all these concerns. These programs are generally web-based, and provide immediate access to essential information about the drug including its usage, dosing, and side effect warnings. Information about financial assistance, frequently asked questions, and access to a 24/7 medical support hotline are also commonly offered.

Partners in Transforming the Healthcare Landscape

Healthcare in the United States is complex, often fragmented, and challenging to navigate, particularly for underserved and uninsured populations. Barriers, whether physical, socioeconomic, or healthcare system-related, can prevent valuable populations from receiving access to timely diagnosis and quality oncology care. Since the 1990s, patient and nurse navigators have been identifying and addressing barriers and inefficiencies in relation to the healthcare system and patient care.

The Patient Navigation in Cancer Care 2.0 toolkit examines the history and evolution of navigation, core competencies, current models of navigation, and the role of the navigator along the cancer care continuum. It also explores the importance of administrative engagement and outlines standardized metrics for the development of a successful, measurable navigation program.

Over several months, a small group comprised of staff from Pfizer Oncology, the Academy of Oncology Nurse & Patient Navigators (AONN+), and The Lynx Group met to devise and coordinate the toolkit. With a membership of over 8,200 people, AONN+ is the largest professional organization in the United States dedicated to advancing the role of patient navigation in cancer care and survivorship care planning. The Lynx Group oversees the organization’s management and marketing.

Featuring content created by Pfizer that’s presented in both print and digital formats, the Patient Navigation in Cancer Care 2.0 toolkit is intended to serve as an everyday resource for oncology navigators and a template for administrators interested in developing value-based cancer care through navigation.

The premise of value-based care is that more coordinated patient care will improve outcomes and lower costs. Navigators play a critical role in the coordination of care and patient empowerment through education, patient-reported outcomes, and emotional support. Because of its size and central role in shaping such a landscape, the AONN+ endorsement has become influential as a symbol of trust, both for brands like Pfizer in need of an ally within healthcare and providers in search of guidance.

An additional toolkit focused on prostate cancer will be released before the end of 2019.

Health Care Provider

The Affordable Care Act has shifted the focus of health care providers and payers away from service delivered and forced them to focus more on patient outcomes. In many cases, doctors’ incomes are now directly tied to how well their patients are doing.

A major challenge to this model is medication nonadherence, which is responsible for $290 billion in medical spending in the U.S. alone each year.2 As many as 30 percent of prescriptions are never filled, according to a recent Credit Suisse report.3 And among patients with chronic diseases, 50 percent stop taking their medications within the first year.

The most common reason cited is behavioral—69 percent of nonadherence is a result of simple forgetfulness and procrastination—though there can be a variety of explanations, including confusing protocols, high out-of-pocket costs, and uncomfortable lifestyle changes.

Patient and caregiver support programs can serve as an extension of the health care providers’ care in between appointments by providing financial assistance, step-by-step protocol guides, symptom trackers, and immediate access to live medical assistance, each of which is likely to improve adherence.

The programs can also serve as multidimensional resources for the health care providers themselves, offering evidence of the drug’s safety and efficacy, information on new developments as they arise, and a manuscript for common patient concerns.

Pharmaceutical Companies

As large as a figure like $290 billion in medical spending may loom, it’s believed that medication nonadherence costs the pharmaceutical industry in the U.S. nearly as much in lost potential revenue each year and an estimated $637 billion globally4. Which makes adherence, as one analyst described it, “the single greatest financial opportunity for the pharmaceutical industry.”

Support programs can train patients directly in how to administer injections. Dedicated patient advocates (or case managers) can also continue to work with patients to help them identify financial support to help pay for ongoing treatment, as well as suggest lifestyle changes necessary to manage their condition and peer support groups to nurture their emotional wellbeing.

Patient and caregiver support programs also offer an opportunity to distinguish a brand in an increasingly diverse and competitive market. The recent spike in health spending is largely attributed to the surge of costly new specialty drugs, for which per capita drug spending increased by 55 percent between 2013 and 2016. In 2014 alone, prescription drug spending grew 11.5 percent on a per capita basis, largely because of new specialty drugs that came to market. And though spending was down in 2017, it’s projected to increase through 2027.5

While the audiences for this new generation of specialty drugs are relatively small, the impact of a support program can be quite large. It establishes a culture of personalized support and transparency that extends to the patients and health care providers directly involved in the treatment, as well as caregivers, family, and friends.

Developing an Effective Patient and Caregiver Support Program

Focusing Priorities and Investment

Patient and caregiver support programs are generally comprised of two platforms. A brochure provides a brief overview of the product and program and refers to a website that functions, essentially, as the program’s hub. Standard features of the site include (but are not limited to): a more comprehensive overview of the product, including benefits and potential side effects, and program; frequently-asked questions; and a registration portal for financial assistance (including co-payment support).

That said, there is no one-size-fits-all patient and caregiver support program. Beyond those core components, there can be a lot of variation. Ultimately, the design depends on the disease being treated, the treatment that’s been prescribed, and the product’s effects on patients.

An effective patient and caregiver support program provides purposeful support to all target audiences, while ensuring that expenditures appreciably help patients gain access to, administer, and adhere to a prescribed treatment. Breaking the program down into three phases—development, implementation, and oversight—will help focus those priorities and investments.


Defining the target audiences is the first, and perhaps most critical, step in the process, and not simply in broad stokes, such as “patients,” “caregivers,” and “health care providers.” The greater the level of specificity, the more pointed the support program will be. To that end, key stakeholders should be consulted in an effort to better understand their needs and wants. Brands need to deeply understand patient needs from their perspective.

The research will also aid decisions about the size of the investment in the program. Smaller patient populations, for example, place a very high value on the individual, justifying personalized services with larger per-patient costs.

One such service that’s become commonplace is a daily symptom tracker that can be used to alert a patient advocate (or case manager) of a potentially serious side effect. The advocates, who are usually nurses with extensive training in the product and experience in the disease being treated and the prescribed treatments, work with the patient and/or their caregiver to identify the next step. Advocates also perform regular check-ins with patients and maintain records of any personal medical history that patients are willing to share.

Hiring and training advocates can be one of the most time-consuming parts of the development phase. The focus of the planning, initially, should be reserved for determining the components of the support program. Once the framework is in place, the attention should shift to content development and any necessary personnel hiring and training. The earlier the planning can begin, the better.


The central question of the implantation phase is: How will the patient and caregiver support program be advertised? Traditionally, the brochure is the primary vehicle. It’s distributed at medical conferences, where it’s often complemented by interactive booth panels, and by the brand’s sales representatives during their office visits, during which supplemental interactive visual aids may also be employed. A link to the website should also be featured prominently on the pharmaceutical company’s clinical and consumer websites, among the basic information about the product.


A patient and caregiver support program is a living organism. The pharmaceutical companies that achieve the best results make a habit of regularly monitoring, evaluating, and optimizing the programs, both through research with key stakeholders and leveraging data analytics to identify drop-off points. Linking the two helps isolate opportunities for engaging patients—which affects patient satisfaction and brand perception. Performance assessment is as essential to a program’s execution as establishing a framework is to its implementation.


  1. Budget-Busters: The Shift to High-Priced Innovator Drugs in the USA,” EvaluatePharma, September 2014.
  2. Thinking Outside the Pillbox—A System-wide Approach to Improving Patient Medication Adherence for Chronic Disease,” New England Healthcare Institute, August 2009.
  3. Pharmaceutical Companies Should Focus on Medication Adherence to Improve Revenue,” Healthcare Finance, June 14, 2018.
  4. Medication Adherence: Pharma’s $637 Billion Opportunity,” HealthPrize Technologies.
  5. What Are The Recent and Forecasted Trends in Prescription Drug Spending?” Peterson-Kaiser Health System Tracker, February 20, 2019.
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