The value of measuring patient experience

In a 2019 Gallup Poll, the pharmaceutical industry unseated the federal government as the lowest-ranked industry in terms of reputation in the United States, with negative ratings exceeding positive ratings by double digits. The patient experience plays a key role in pharma’s poor reputation and many in pharma now recognize that by improving the patient experience, companies can help support improved outcomes as well as tackle their reputation problem. With procedures and diagnoses down by 35% in April compared to March 2020,* the COVID-19 pandemic highlights the opportunity for pharma to understand patients’ day-to-day experiences and do something to improve it. While some pharma companies have invested in a variety of patient-focused programs to improve reputation or patient experience, most have struggled to demonstrate the value generated from these programs. Only by understanding where and how programs are delivering value can pharmaceutical companies take bigger, more meaningful steps toward helping patients—and themselves.

Pharma companies must establish a comprehensive patient experience measurement capability in order to link their patient-focused investments to the patient experience, and ultimately to business outcomes. In this way, pharma companies can make informed decisions to better serve patients and find new growth opportunities.

We analyzed over 100 publicly available sources on over 20 mid- to large-cap pharmaceutical companies to understand how they are currently measuring their patient-centric efforts. 

We found that most companies rely exclusively on activity and financial metrics. These activity metrics, such as patient support program enrollments and emails opened, capture the volume of patient activity and interactions with their programs but lack the descriptive power necessary to understand the patient experience. Likewise, financial impact metrics, such as scripts and treatment adherence, only provide a narrow window into observed patient behavior and outcomes. By focusing solely on activity and impact, these companies expose themselves to a blind spot in understanding why these activities are driving impact for patients. 

Some companies in our research, such as UCB, Otsuka, AbbVie and Sanofi, have taken steps in the right direction by quantifying the relationship between activity and impact metrics, which can serve as an indicator of patient experience. As a result, these companies can begin to understand how utilization of specific services is related to outcome metrics such as adherence and cost of care, which then enables them to optimize program elements over time. However, more work is required to understand the drivers behind these causal relationships.

The pharmaceutical industry’s collective gap in understanding the patient experience opens the door for other stakeholders within and outside of the healthcare ecosystem to better serve patients. This implies that pharmaceutical companies face a risk of being pushed farther away from closing the patient experience gap and realizing the benefits of an improved reputation.

For example, existing provider and payer stakeholders within the healthcare system are already incentivized to optimize for patient experience. Payers regularly track Net Promoter Scores (NPS) and patient satisfaction metrics, which drive payments for certain health plans and are used to track the likelihood of plan renewal. For providers, the movement toward improving healthcare quality and the adoption of value-based contracting is intended to streamline and optimize patient care and outcomes—a proxy for patient experience. While results from value-based contracting have been mixed, there’s enough momentum from payers and government entities to continue the drive to improve patient experience and value to patients. By incorporating patient experience learnings into product design, pharmaceutical companies can generate a stronger value proposition that’s better aligned with payer and provider priorities, and ultimately provide a competitive advantage.

Amazon, an outsider to healthcare, has also made several big partnerships and investments over the past several years to enter and disrupt the healthcare industry. Notorious for collecting and leveraging customer experience data to develop and customize product offerings, Amazon has begun piloting Amazon Care, in which the company’s Alexa voice technology is combined with telemedicine. In addition, Amazon is pursuing drug delivery through its acquisition of PillPack and its world-class logistics capabilities, and has forayed into creating its own health plan with partners Berkshire Hathaway and JP Morgan. While Amazon may not displace pharmaceutical companies in the development of new medications in the near term, their experiment with healthcare delivery designed around the patient experience has the potential to seriously disrupt the healthcare ecosystem.

There are three critical success factors that pharma companies must consider when developing a patient experience measurement capability:

1. Forming a measurement-oriented culture: The shift for pharma needs to start with a change in culture. It’s particularly important to understand the organizational effort, investment and emphasis of leadership on patient-centric programs to assess the progress of change. However, there’s a gap within pharmaceutical companies when it comes to evaluating how supportive and proactive their leaders are in promoting the measurement culture.

We see many companies experimenting with internal cultural initiatives to help shift the mindset to focus on the patient and consider their full experience, yet only some companies measure their enterprise-level enablers of patient programs. For example, Takeda has implemented “In Their Shoes,” a disease immersion program for its employees. The company measured significant improvement in employees’ disease understanding and empathic connection to patients, as well as organizational innovation and pro-social job perceptions. The program spawned ideas including #FlyWithIBD, which resulted in seven airlines committing to changes in their food-related operations, such as providing “greater details on ingredients of any food offered on flight online at least 48 hours prior to the flight,” and things like automatic seat prioritization next to the restroom for passengers who have selected an IBD meal option. Companies can go even further by measuring how these enablers have impacted the patient and business. Only by tracking progress like this can pharma companies hold themselves accountable in their mission to improve patient experience.

2. Closing the loop with real-world data: There has been an explosion of real-world data (RWD) being generated in the healthcare industry over the past decade. Mainstream and emerging RWD sources offer pharmaceutical companies an opportunity to understand their patients with greater depth and breadth than has been possible before. Mainstream sources, like claims data, can give pharmaceutical companies a view into healthcare utilization and some clinical information. Emerging data sources, like electronic health records, genomics, labs and biomarker testing data, can provide a much more detailed clinical view of patients. Emerging data is essential for pharmaceutical companies that need to identify areas of greatest unmet need. Based on our research, most companies observed are already starting to leverage mainstream real-world data to measure activity and impact. However, these mainstream metrics alone, even when paired with emerging data, lack the explanatory power to demonstrate the value generated by their patient-focused programs.

Recent innovations in the industry have enabled linking across RWD sources at the patient level, which allow for quantification of causal links between these activity and impact metrics. While not directly describing patient experience, these causal links can provide the specificity required to personalize and optimize services and products for patients. Companies can help close the loop between patient engagement, behavior, experience and impact using technology from companies such as HealthVerity, LiveRamp and DataVant. 

Solving for patient experience also requires a deep understanding of the patients for whom these products and services are developed. Tapping into RWD sources beyond common commercially available RWD datasets (scripts, medical claims, electronic health records, etc.) could yield insights into the patient that were previously blinded to pharma. These companies should systematically assess and fill in knowledge gaps of their patients through new emerging RWD sources (like biomarkers and social determinants of health), or by generating the data themselves or through partnerships.

Partnerships with companies outside of the pharmaceutical industry could yield tremendous value through access to new technologies that capture emerging data on the patient. For example, Verily’s Project Baseline has attracted a number of industry leaders, including Novartis, Otsuka, Pfizer, and Sanofi, with its mission of generating robust data on patients through electronic health records, biometric data, and self-reported patients. Another company that has garnered industry attention is Propeller Health, whose novel respiratory digital medicine solutions have led to partnerships with AstraZeneca and Boehringer-Ingelheim.

Through its partnership with healthcare technology company 23andMe, GlaxoSmithKline (GSK) can not only access millions of people’s genomic data for drug development but also learn from patient responses to questionnaires about their overall health and experience living with particular ailments. Uncovering insights from partnerships like these will allow pharmaceutical companies to better understand patient need and to deliver a better product.

3. Listening to patients: While RWD provides quantitative insight into patient behavior, it provides a limited window into the drivers behind behavior. Patient behavior is heavily influenced by experience and is just as important for pharmaceutical companies to understand. As uncovered through our research, over 80% of pharmaceutical companies’ patient-focused programs do not explicitly measure the patient experience; those that do may simply look at specific patient interactions with a marketing campaign. While use of a branded drug support program, engagement with a brand’s direct-to-consumer tactics, or reference to a corporate reputation study reported by patient advocacy groups are interesting activity and engagement measures that may start to open the window to patient experience, they do not capture the nature and nuances of the experience directly from patients.  

To understand each patient’s unique and individual story, organizations need to go directly to patients to capture the texture around their experience. Companies can start with patient-reported outcomes (PROs) or voice-of-the-patient-type approaches to understand how various treatments might affect what patients are able to do and the symptoms they experience. For example, a voice-of-the-patient platform and service could capture individual patient-level feedback and report it back in real time to the client. PRO instruments are typically used in targeted scenarios where companies are trying to achieve a certain designation, approval or label for competitive advantage, whereas voice-of-the-patient research can be used more broadly for patient insights generation.

Qualitative approaches to engage directly with patients, such as narrative interviews, e-journals, patient co-creation, experience rooms and panoramic ethnography, are designed to elucidate context and texture to key moments in patients’ lives and to illuminate every patient’s unique story. Insights about patient motivation and feelings can then be overlaid with observations from RWD to generate a holistic view of the patient, helping to create a patient experience map. These learnings can help pharmaceutical companies prioritize and optimize their decisions and strategies.

Outside of pharma, benchmarks and indices exist to measure patient experience (HCAHPS) or customer experience (Forrester’s Customer Experience Index). To date, pharma lacks a holistic way to measure the patient experience directly from patients, which would help companies understand areas to improve relative to competitors. Measuring against an index can be a key mechanism to inform the pharma industry’s patient centricity transformation, enabling companies to hone the ways in which they can improve experience, outcomes and costs for the system.

Given pharma’s poor reputation, the continuing consumerization of healthcare, and the increased competition from within and outside of the healthcare ecosystem, delivering on patient experience should be the top priority for pharmaceutical companies. Only by measuring patient experience can companies truly design and continually improve products that provide maximum benefit to the patient, the ecosystem and the business.

To do this, companies need to address three things:

• First, companies should develop internal enabler metrics that will hold both leadership and employees accountable in their mission to improve patient experience and drive value. Leaders can consider implementing changes like adding a patient experience measure as part of their employee review cycle, or measure changes in employee empathetic connection to patients and employee engagement through tools like the Toronto Empathy Questionnaire and Prosocial Job Characteristics Scale. These can help companies understand whether there is a true shift in culture and focus on the patient.
• Second, companies need to take advantage of the plethora of available real-world data and connect patient activity and experience to impact. By compliantly linking across RWD sources at the patient level, companies can produce insights based on causal relationships that inform customization of services for each patient. For example, linking patient support programs and patient outcomes data can yield insights into the interventions and support needed to improve patient adherence. There are also several partners that can help statistically validate those relationships. Where data does not exist, pharmaceutical companies should look outside of the industry and generate the relevant data themselves where appropriate.
• Finally, companies need to understand the drivers behind the observed patient behavior. Most companies lack this view into the patient experience, which can be best uncovered by either talking to patients directly or through industry benchmarks. Companies can start thinking about how patient co-creation and research like mobile ethnographies can be integrated into strategic planning. Getting patient input early and often can help companies become more efficient and ensure that patient needs are considered throughout the product life cycle. 
  

Filling in these measurement blind spots will provide pharmaceutical companies a window into the patient healthcare experience, which in turn will help them make more informed decisions on delivering a better experience and more value to the patient.

*Source: Symphony Health, Integrated Dataverse (IDV)®, March 1, 2014–April 30, 2020, de-identified patient adjudicated prescription, medical, and hospital claims, Jul. 2020