Embedding the Patient Point of View in Everything You Do

The term “patient centricity” has been around for over a decade, and since its first utterance the buzzword has been praised, dissected, criticized, and everything in between. The concept has always been worthwhile, but people within and outside of the industry have wondered whether the industry was truly becoming more patient centric? If its patient-centric strategies were actually working? How the industry could do a better job of practicing what it preached in this regard?

One of the most surefire ways to be more patient centric is to put actual patients at the center of everything. To incorporate the patient voice in marketing efforts. To bring in the patient perspective to explain how the clinical trial process could be improved. To work directly with patients to develop medications, service offerings, information toolkits, and anything else that could address their unmet needs.

To find the best ways for the life sciences industry to embed the patient perspective in its processes, PM360 asked 10 experts:

  • What have you found to be the best methods for gathering and incorporating direct patient insights to improve areas across a product’s lifecycle?
  • What regulatory issues or other barriers do companies face when trying to get patients directly involved? How can companies overcome these barriers or other limitations to facilitate more collaboration with patients?
  • What are the biggest organizational changes required to make a more patient inclusive approach possible? How can you ensure buy-in throughout the company?
  • What areas within the industry are most in need of changes to better fit what patients desire? Why has the industry struggled in these areas? And how can patients be included more in order to help resolve these issues?
  • What has been the biggest or most surprising piece of patient feedback you have ever gotten? How did it change what you were doing?

Marianne Gandee

Patient centricity within Pfizer Oncology has always been a longstanding focus, which is why we launched Pfizer Oncology Patient Centric Ecosystem (POPCE). POPCE provides an enhanced framework for patient and advocacy engagement with Pfizer so we can better understand and more rapidly integrate patient perspectives in every facet of our work.

It brings together oncology advocacy organizations to work with our leaders to understand key issues (e.g., health literacy), share best practices, identify solutions, and execute actions to collectively address problems that create barriers for cancer patients across the U.S. If we cannot act on suggested ideas, we keep ideating so we can collectively get closer to delivering on the ideal for our patients.

Most Impactful Patient Feedback

The most surprising feedback from a patient that changed what I was doing was from my uncle. A former Navy Captain and never-smoker, he was diagnosed with late-stage NSCLC and took it day by day as though a cure was on the horizon. Even as they cut out a metastasis that left half his handsome face paralyzed, he had a huge half smile. “Cure,” he said. This was the insight. A word that means something different to HCPs and researchers than it does to patients. At present, many cancers should never be described as “cured” because their stage is too advanced, that type of cancer is currently not curable, or the survival rate too low, or their risk of recurrence too high.

But battling information asymmetry is one of the best ways to address the ongoing inequities in our healthcare system. “Cure” put me on a path to work across a network of incredibly smart, passionate, and well-meaning stakeholders to connect dots, create forums for sharing ideas, drive patient-centered approaches, and eliminate lost-in-translation moments. My hope is someday when a patient like my uncle says “cure,” it will apply as intended.

Lisa Lishman

The increased relevance and usage of social media is significant and is likely to be integral in gathering insights to inform the drug development pathway. Social media data, or real-world data, offers an opportunity to gather a real-life perspective from patients and understand what is important to them in day-to-day life. By gathering this data and retrieving insights, companies can begin to use these findings to better understand patients.

As with any real-world data, social media data usage does not come without internal tensions, pressures, and legislation, all of which can still add complexities; but companies cannot use this as a reason not to utilize and explore this opportunity. Alleviating concerns around data privacy and the risks related to using real-world data is pivotal to the success of using data to gain insights and to move the data dialogue between patients, regulators, and healthcare professionals forward.

Why Patient Inclusion Is Essential

By working together and pooling resources and knowledge, the industry can begin to better understand the true patient experience. Through collaboration, better insights can be gained and, in turn, a “right fit” can be achieved for spending resources in the most beneficial way. When the industry listens, learns, and acts upon those findings, the result is a win/win for everyone involved.

Involving patients as early in the development process as is possible and appropriate would also have significant implications for helping to relieve both care and costs burden in health systems around the world. But to shift the industry’s approach to healthcare, all stakeholders must move the efforts, attention, and education necessary to find a common ground and ensure that the patients’ interests are always driving development.

Jen Horonjeff

There is no one-size-fits-all approach to gathering patient insights—the methodology needs to be fit-for-purpose. It is very common for us at Savvy Cooperative to get requests to deploy surveys or run focus groups, but when we actually speak with the company, it becomes clear that these modalities may not be best suited to address the questions they seek to answer.

Quantitative survey results can often lead to a false sense of security around pre-selected response options, therefore missing critical contextual information that helps someone truly understand the patient’s perspective. Focus groups can introduce bias to the group and can be challenging to be inclusive of everyone’s schedules. One-on-one semi-structured interviews often allow for a rich dialogue with a patient that allows you to probe deeper based on what you hear.

Methodologies that Work Best for Patients

We frequently leverage mixed-methods, asynchronous online workshops, which allow patients to participate on their own timing, from anywhere around the globe, translated into their native language. The advantage of this methodology extends beyond inclusivity—it reduces the bias between respondents while also promoting interactivity, and it blinds the sponsor to sensitive personal identifiable information (PII), which lends itself to wider use across a highly regulated industry.

Workshops like these can help companies understand the unmet needs or current treatment experience of diverse patient populations, or to gain feedback on a clinical trial protocol, marketing campaign, or digital product. Once you identify the question you’re trying to answer or business decision the insights would inform, you can craft and deploy a project that provides actionable insights that are not only good for the business, but will help meaningfully improve the patient experience. It’s important to note that patient input should happen early, often, and iteratively, so that patients can effectively co-create future health innovations.

Michele Rhee

Ensuring that the patient perspective is incorporated into decision-making across a product’s lifecycle requires a combination of practical and cultural solutions. The practical solution is to operationalize the incorporation of the patient perspective by updating standard operating procedures (SOPs) and guidelines to require a patient/advocate review step (i.e., in protocol and amendment development SOPs).

That operationalization can sometimes only happen after a cultural shift where others at the company (not just the people in the Patient Advocacy function) are “patient advocacy evangelists.” It is never enough for the “Patient Advocates” alone to champion the patient perspective. It must be something that people across the company believe in and speak about every day. I know I have done my job when, for example, others say that we should use the word “participant” instead of “subject” in a protocol. The culture and mentality should be embedded in everyone’s mindset.

Barriers to Incorporating Patient Insights

When obtaining insights directly from patients, compliance, Good Clinical Practice (GCP), and disclosure are the main potential barriers. Ultimately, we all want to help and protect patients, so for any initiative that requires direct patient engagement the priority is to ensure that patients are protected.

It helps to have larger conversations about the goal of an initiative and to align on the necessity to achieve that goal, and then the conversation can focus on how to achieve that goal—not whether to achieve it. A concept brief for internal review allows everyone to provide feedback on their specific compliance/GCP/disclosure concerns, which can then lead into a constructive discussion about exactly what is needed to move forward toward the final goal of helping patients—and helping them in the way they want to be helped.

Rachel Ballinger

“Burden of illness” is a phrase typically used in clinical research to describe the impacts of a health condition on a given population. Given its place in our everyday vernacular, it is quite normal for us as researchers to use the word “burden” when speaking with patients. I once received feedback from a patient advocacy representative, in an organization that supports families of children with a life-limiting condition, who said that “burden” has an overly negative connotation. Yes, there are certainly difficulties that seem extreme from the perspective of those not dealing with an illness, and while those families would never have wanted to be in that situation, there was more to their experience than “burden.”

Consider the Wider Context

As a result of this constructive feedback, we adopted the term “challenges” when speaking with these families. We were also encouraged to ask about any positive experiences, and this helped provide greater insight than we would have otherwise obtained. Other examples of where language can have an overly negative connotation include “battle with cancer,” and even “patients,” who are people after all! In these examples, consider instead “experience with cancer” and “people with x condition.”

This experience has remained with me. Of course, we adopt the language of our professional environment, but this example highlights the importance of considering these conversations from the perspective of study participants, rather than solely from a research point of view. Our everyday words are powerful. They can imply a certain meaning that does not align with felt or lived experiences or impose undue weight to a situation that has been carefully navigated. They can even be detrimental to the lives of those we want to better understand, when ultimately it is those lives we seek to help improve.

Bonnie Perkins

Customer feedback is essential for improving any product, including healthcare. However, I don’t believe there is, or should be, only one way of gathering patient feedback. While I like traditional blinded market research projects or online virtual panels, the participants tend to be the “engaged patients” and may not account for the doctor-dependent patients needed to reach to move the market. I have found success using some unique methods to collect insights across the product lifecycle.

1. Direct Patient Inquiries: Most organizations have a phone number (i.e., med info or case managers) for consumers to contact the manufacturer and ask questions. No matter the answer, how can the questions get back to the business for use as insights? Similarly, what are the top 10 questions being asked by patients each month? While the first five questions may stay consistent, the bottom half may surprise the team with a topic they didn’t know was being asked.

2. Non-prescribing Office Staff: Organizations know office staff can often spend more time with the patient than the prescriber. This sub-set of office personnel is valuable and often leads to rich insights if marketers can spend the time/money.

3. Current employees: While we are employees, we also have experience in other areas or as healthcare customers. In the past, I have put out an announcement to ask if any employees have experience with a specific indication or product and would like to answer a few questions. As a marketer in the pre-commercial phase, this feedback, combined with field-based market research, provided a realistic perceptive of the marketplace. It has also helped drive the development of materials in a faster, more efficient way than traditional market research.

Jennifer Goldsmith

For years, patients and caregivers have wondered why their healthcare experiences were often so different than their everyday consumer experiences. Why could they order a DoorDash dinner so easily when care was so hard to find and access? Why was the care journey filled with friction? Why did interactions with healthcare systems seem hurried and transactional? Why could they check their banking balances at any time on their mobile phones, but they couldn’t find the healthcare information they needed when they needed it most? Why did healthcare organizations find it hard to provide the same level of access, personalization, and service they regularly saw in other industries?

Building a More Frictionless Patient Experience

Healthcare has struggled to provide the type of experience that patients desire for a number of reasons—from fractured and aging technology landscapes to a lack of healthcare data interoperability, to processes that focus heavily on revenue cycle management and administration. To fill the gaps, healthcare systems have often made do with what they have, extending current processes and technologies when resources were not available to support significant and sustainable transformation.

This is changing. The pandemic made clear the need to create a new model for engaging with patients and caregivers, one that is frictionless, personalized, proactive, collaborative, and accessible. The voice of the patient and caregiver will be critical in this process. Healthcare systems have the opportunity to engage with patient advisory groups and community leaders to conduct research, select and implement new technologies, and update old ways of working. Creating deep relationships, giving patients and their caregivers a seat at the table, and providing regular opportunities to participate will help to ensure a strong alignment between the healthcare organization’s programs and the real needs of the communities they serve.

Michael Oleksiw

Patients want to feel like people first and patients second. They don’t want to be defined by their illness. Being a patient is only a part of the journey of being a human. People get tired of feeling that they are their sickness; they’re tired of carrying the baggage of being a “patient,” and they want to be seen and treated like the person they are, not the prescription they take. This is a tangible human challenge.

Empathy needs to be a core strategic imperative for pharma brands. It becomes a connector between the human and digital worlds with regard to patient care and support. In fact, companies need to shift from traditional ROI thinking to the newer ROE—or Return on Empathy. However, this paradigm shift will take time to take root as a true business strategy with measurable results.

Embracing an Empathy-First Approach

For example, too often, adherence programs only address functional barriers to adherence such as cost or forgetting to take medication. To truly affect long-term adherence, programs must address underlying psychosocial barriers. Brands must consider the totality of patient needs and deliver a program that is truly personalized to each patient.

Even if the problem may be complex, the solution is simple. Get personal with each patient, understand how they feel, what keeps them stuck, learn what their barriers are, understand what makes them tick, and then give them connection, content, and tools that truly help them forge healthier outcomes and a healthier life. Patients are grateful for the personal connection made. When they feel heard and listened to, when their fears, worries, and concerns are addressed and that human connection happens at the start of their treatment, they feel more confident to make better choices in managing their health.

Victoria Donovan

The industry needs impactful change, and as industry leaders, we must ask: How can we improve patient inclusivity and promote diversity, equity, and inclusion (DEI)? With a more patient-inclusive approach focused on DEI, clinical research can promote health equity and the safety and effectiveness of new treatments for all patients. According to the Center for Drug Evaluation and Research (CDER)’s 2020 study, people of color accounted for around 25% of clinical trial participants, even though drugs are known to have variations in responses across racial and ethnic groups. In order to improve patient inclusivity in clinical trials, the biopharma industry must incorporate DEI in all processes.

From budget formation to protocol design, sponsors and researchers must consider DEI at every stage of the drug development process, with a focus on increasing accessibility. Biopharma companies might consider including research sites that are accessible by public transit, covering transportation needs via services such as Uber Health, subsidizing other lifestyle expenses like childcare, and incentivizing research sites to alter their hours for more convenient availability.

From a recruitment and retention perspective, DEI can be embedded into outreach and engagement campaigns. In dermatology for example, you can conduct thoughtful market research on patient populations, train sites (and occasionally sponsors) on how dermatologic conditions present in all skin tones, authentically speak to and represent patients of all identities, and ensure patients have a positive experience.

These suggestions are in no way comprehensive, as the issues of addressing inaccessibility and building trust are complex. Fortunately, the industry is increasing its discussions around improving patient inclusion and DEI. In April, the FDA released an updated draft guidance identifying steps to improve diversity in clinical trials. With these steps and conversations, we can start making changes for the better.

Michael Zilligen

The type of services and location where patient support services (PSPs) are provided has evolved over the past several years. The complexity of specialty medications has resulted in an increase in testing requirements prior to treatment initiation. Baseline lab tests are common, but diagnostic testing, such as ECG, echocardiogram, and Ocular Coherence Tomography requiring specialized devices, have found their way into product labels and REMS programs. The industry has been slow to evolve their PSPs to include diagnostic services due to a variety of factors, including operational complexity, costs, and legal parameters. However, at the core, many have failed to listen to the needs of the patient.

Many patients prescribed specialty therapeutics possess physical limitations or compromised immune systems making it extremely difficult and/or risky to visit clinics where testing may be available. In instances where it is available, it may take weeks or even months to schedule these services, prolonging treatment initiation of life-changing medications. This negatively impacts the patient experience, often resulting in patients starting an alternative medication or no therapy at all.

Meeting Patients Where They Are

By understanding the needs of patients, PSPs can be tailored to include an in-home clinical component that provides the services in a location ideal for patients. The ability to provide specialized testing and diagnostic services by experienced clinicians in a timely manner helps lower the barriers to patient access to important specialty medications.

Further enabling clinicians to bring these services directly to their patients is the increasing availability of mobile diagnostic technology. This can result in a positive patient experience and abbreviated time to treatment initiation. But it all starts with truly listening and understanding the challenges each patient faces and leveraging mobile technology to meet the patient where they are.

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