Consumer/Patient Experience Special Feature: Delivering value in an era of empowered patients

, , , , , , , , ,


By Bill O’Bryon

Managing Director, Digital

The Patient Experience Project, an EVERSANA agency


Improving the quality of patients’ lives is dependent upon our ability to effectively locate and engage with patients, as well as support the therapeutic onboarding and adherence of patient populations.


The healthcare industry is ever evolving and today’s patients are far more engaged than the previous era of “doctor knows best.” Increasingly, not only are patients involved in managing their day-to-day health, they and their fellow patients, caregivers, and advocates are driving the progress of drug treatments from discovery to delivery as well.

Bill O’Bryon

As engaged, motivated information seekers, patients are becoming key decision makers regarding their own health and well-being. Their voices can be read and heard throughout digital, social and popular media, from news programs to Facebook posts, blogs, podcasts, YouTube videos and documentaries. All of these are important components of connecting themselves with HCPs, scientists, and disease experts; designing clinically meaningful endpoints; educating online communities about trials; and improving disease awareness and diagnosis. Patients are empowered and unafraid to tell the community—and the world—what they see, feel and need.  

As this “patient-as-consumer” culture enables patients to consider all their varied care options, they increasingly want to be involved not only by participating in clinical trials, but also by accelerating product development and the availability of patient support programs after a product reaches the market for a rare and complex disease. And, like all modern consumers, they expect outcomes to be personalized, delivered on their terms, and of high value.

And in our roles as marketers, we are also now responsible for delivering value across the entire product lifecycle. This requires a strategic and coordinated approach that includes patient-driven data analysis and innovative research techniques to generate real insights into the patient journey in order to drive rich patient experiences and, ultimately, adherence. These insights, create authentic and compelling patient, payer, and provider engagement strategies, programs, and support.

As the industry transitions, so must our approach to ensure we are building best-in-class care teams that connect with patients and sustain adherence – including HUB, adherence support, and affordability programs – and that delivers value to both large chronic disease populations and the targeted orphan therapies predicted to dominate pipelines by 2025. (In January 2019, then FDA Commissioner Scott Gottlieb and CBER Director Peter Marks issued a statement: “We anticipate that by 2020 we will be receiving more than 200 INDs per year, building upon our total of more than 800 active cell-based or directly administered gene therapy INDs currently on file with the FDA. And by 2025, we predict that the FDA will be approving 10 to 20 cell and gene therapy products a year based on an assessment of the current pipeline and the clinical success rates of these products.”)

With that in mind, here are some key areas of focus to help guide your efforts in successfully reaching patients, sustaining adherence and delivering value.


Build a strong foundation of insight via primary and secondary research

You cannot successfully reach and engage with patients if you do not understand the markets forces impacting their journeys. Start by understanding what your market drivers are, including new and current product market access requirements, such as commercial and government payers pricing and needs, brand reimbursement and distribution, and organized healthcare providers barriers and opportunities. In the process, you will need to understand how increased consumer engagement impacts specialty drugs, cost sharing, and health outcomes engagement, as well as how the increased demand for value drives the focus on payer dynamics, including outcomes research and value-based contracts.

What insights are to be gleaned and where do you begin with your research? Start by:

  • Leveraging syndicated studies that are grounded in ongoing longitudinal data and research
  • Conducting customized market research on the specific areas of need of a client/product
  • Employing rapid customer access by co-creating content and programs with the right respondents

By committing to continuous learning, you can make evidence-based observations that reveal data and insights that can provide actionable solutions to your business challenges including, artificial intelligence (AI) and predictive analytics (PA). This evidence provides a foundation for strategy development and perspective for prioritizing real results for everything from drug pricing and reimbursement to product delivery, adherence, and loyalty/advocacy challenges across the product’s lifecycle.


Find and recruit patients

Technology has had a tremendous impact on how patients seek information about particular diseases, therapies, and clinical trial information. They are increasingly interacting more with Facebook, Instagram, and Google than with their healthcare professionals. Social media provides a convenient and far-reaching platform for patients to reach out and connect with others who share their experiences or conditions. The pervasiveness of health-related social media communities provides fantastic opportunities to connect directly with patients and patient groups.

Recruiting patients for clinical trials is challenging: 15% to 20% of sites never enroll a single patient, and 80% do not meet their enrollment timelines. Clinical trial patient enrollment is the single greatest cause of delay in bringing new products to market, with approximately one-third of Phase III studies terminating due to enrollment challenges. It is important to develop a comprehensive online outreach campaign—especially for rare and complex conditions with hard-to-find patient populations—to attract, engage, and convert patients to participate in clinical trials, patient registries, and natural history studies. By finding qualified patients and accelerating clinical trial timelines, clients have the opportunity for earlier regulatory filing and launch and patients get access to the therapies they need.


Demonstrate results to build the strongest payer relationships

Payers are playing a bigger role, so it’s important to understand the payer landscape, including competitive drugs and the importance of real-world evidence (RWE). Make sure you are getting payer claims data on a regular basis to identify trends and improve your clinical policy and access strategies. In poorly understood patient populations, be able to provide guidance on specific patient characteristics that confirm the patient population so payers understand the potential impact. In highly competitive and crowded populations, be sure to generate data that demonstrates the differentiation of your product in the market.

Just like patients, caregivers, and HCPs, payers need education on these therapies, so be sure to build that into your strategy to increase payer acceptance. Infuse value-based thinking into every step of the product lifecycle to best communicate the value story to payers. Then leverage the patient voice with payers to help humanize the experience and give texture to your value stories.


Create rich patient experiences

Our industry cannot truly be patient centric with an approach that keeps patients and caregivers at arm’s length. The days of static patient education brochures and websites are over. When it comes to reaching proactive and highly engaged patients, caregivers and providers, success depends on an empathetic, hands-on approach.

Whether determining strategy, crafting positioning and messaging, or creating a patient campaign—let patients, caregivers, advocacy leaders, and healthcare professionals’ voices be heard. Their voices and insights provide authenticity that resonates with patients and provides credibility to the messages they deliver. In rare disease, where patient populations are small and the stakes are high, relationship building and true collaboration are required to build trust and loyalty with your audience. Understanding that HCPs also face many challenges working with rare disease patient populations, successful engagement requires early, highly immersive content accessible through digital and peer-based interactions. 

By engaging empowered patients, we can ensure that we do not miss opportunities to positively impact and provide value to their journey. Ultimately, the goal should be to provide a patient-driven, consistent, and supportive experience for all your customers, constituents, and collaborators.