PM360 asked those with expertise in crafting better experiences for patients key questions about how companies must change to better serve patients, including:
- What are the biggest areas or gaps that life sciences companies need to improve or bridge in regards to the offerings, services, and overall experience they are providing to patients?
- How must companies operate internally to ensure they are offering patients seamless experiences throughout their journey? What can companies do to break down silos so that all departments operate with a similar focus?
- How can the increased access to real-time patient data help life sciences companies to better understand patients and ultimately improve the patient experience? What types of data prove to be the most useful in this regard?
- Considering patients want more authentic interactions when dealing with life sciences companies, how can the industry improve the way it connects with patients to form more trusting relationships?
For example, life sciences companies can empower patients with treatment-related questions that they can share with their doctor. Not every therapy will work for every patient’s cancer, and life sciences companies could have a hand in fostering meaningful patient/provider discussions through this type of approach.
Additionally, life sciences companies need to better understand the value of oncology nurse navigators as key members of the care continuum. Unlike oncology nurses, navigators work across all treatment areas. They know where gaps and barriers exist and work to proactively remove them so that patients can receive care. Oncology nurse navigators also sit on tumor boards and bring their understanding of the patient’s goals, barriers, treatment, and concerns to the multidisciplinary team. By partnering with navigators, life sciences companies would have access to this vast knowledge and could, in turn, leverage it to develop and distribute more effective communications and patient support services.
What would today’s modern society look like if suddenly people were no longer able to buy things on Amazon, bank online, stream movies on Netflix, or send text messages and photos to their friends and family? Well, that’s pretty much the world that patients experience every day when interacting with life sciences companies. But it won’t be long before this all changes—advances in technology are doing more than just making people’s lives a little more delightful, they are pre-conditioning them to expect more from every single service they engage.
Digital health management companies such as Livongo are already putting this theory to the test by leveraging widely adopted consumer devices like Amazon Alexa to deliver better diabetes care. Imagine a person with diabetes receiving custom meal preparation advice from their kitchen speaker based on the contents of their smart refrigerator and the dietary restrictions inputted by their diabetes educator? You won’t have to imagine, because that application is in development as we speak. Every service we enjoy today in our consumer world will eventually become integrated into our healthcare lives. The companies starting to deliver on the promise of this marriage today are poised to thrive.
To optimize the overall patient experience, offerings, and services, all organizations contributing to drug development must consider the primary stakeholder—the patient, first and foremost. Life sciences companies should prioritize giving patients a seat at the proverbial drug development “table”—incorporating their insights, perspectives, and needs throughout the clinical development continuum. A solid understanding of the burden of illness, potential quality of life issues, and overall needs of the patient, and caregivers, with any given indication will allow the development of clinical study protocols that are created for actual patients. Understanding their perceptions and preferences provides data that further inform recruitment and retention programs, adherence, and future studies.
Incorporating patients into the study design process earlier prioritizes the patient experience. Several organizations have started to incorporate patient insights and preferences into clinical research protocols—but this is typically driven by individual study teams. Others have implemented the use of patient advocacy groups to capture the needs of patients or to support recruitment. While many companies focus on the patient for select indications and therapeutic areas, the patient experience is not optimized consistently for every patient in every study across the board. This is the paradigm we need to shift.
The healthcare ecosystem is comprised of regulators, plan sponsors, payers, key opinion leaders, dispensers, prescribers, and other service providers, who must all work in unison to serve the needs of patients and caregivers. To achieve interoperability and break down silos, companies must align their missions and processes with each of these groups. Alignment is dependent on critical components, including reliable patient support centers that meet industry regulatory and compliance standards, providing experienced clinicians and care coordinators, incorporating continuous ongoing training/quality improvement, and connecting professionals involved in patient care through technology that provides a streamlined intake solution and delivers comprehensive data.
Five of the 10 biggest drug launch disasters can be attributed to companies failing to strike the right balance between access and control. Factors that lead toward increasing product control include specialized product handling, high cost, REMS, novel or targeted therapies, high-touch service requirements, concentrated prescriber base, and dual medical and pharmacy benefit coverage. An optimal healthcare ecosystem uses market access and patient support as a link to the field and marketing team. Patient support services can break down existing silos by defining key functions of each group, including clearly communicating the brand team’s initiatives and messages to all groups.
- Department or cultural silo: When departments do not want to openly share information, a new company-wide focus is required to set a common vision and educate teams on why patient focus benefits everyone in the organization.
- Technology overload or scarcity: Recently, the industry has seen a significant advancement in terms of data, AI, and machine learning. But often, IT technical teams build new tools without adoption of the tools being built out. This overwhelms different teams with uncertainty of what is available for use. Alternatively, not building the needed tools results in the scarcity of technology to provide a seamless experience. Organizations need to engage non-IT teams to create the business solution together with a patient focus while keeping business value as the primary goal.
- Lack of awareness or visibility: Patient data needs to be protected due to privacy concerns, and yet sharing of data is needed to provide a seamless patient experience. This leads to confusion among internal teams, which can be addressed by fostering awareness of privacy laws—engaging teams in interactive sessions to understand sharable data versus privacy.
Across our industry, professionals are under increasing pressure not just to produce quality work, but to embrace new technologies (including AI and machine learning) and keep up with changing privacy laws such as GDPR and CCPA—all on more modest budgets and shorter timelines. As the organizers of Intellus 2019 put it, “all of us, whether you are a client, agency, or supplier, know that change is on its way.” In this sea of change, we can support positive customer experiences by embracing the core value of human centricity—not just in the experiences we create for patients, but internally as well.
Companies can start the cross-pollination of ideas and experiences with their own product and service development processes. When research, technology, and operations teams routinely listen to one another’s needs, challenges, and success stories, they can amplify their ability to deliver a positive experience for patients and caregivers. Next, identify user-centered methodologies that prioritize the respondent experience, allowing patients, caregivers, and treaters to share their stories on their own time, from the comfort of their own home. Finally, prioritize knowledge management and sharing platforms that can allow teams to easily digest and quickly socialize powerful stories, in order to adopt intelligent insights organization wide.
Increased access to real-time patient data helps companies improve patient and care partner experiences in three important ways. The first: Helping companies to reach and engage with people in the right moment, such as when a patient is looking for an alternative solution to a therapy that has proven ineffective. Although targeted advertising isn’t new, it provides a win-win for both the patient and the company if a product becomes a solution in a moment of need.
Second, analyzing real-time, patient-reported data and anonymized online community interactions may help uncover otherwise unknown nuances of the patient experience, from a new opportunity for patient support to a new potential benefit for subgroups.
Third, integrating multiple layers of data from a robust source—as opposed to leveraging a single one-dimensional source—can generate hypotheses that uncover or anticipate true unmet needs for patients that could drive meaningful clinical development programs. Of course, these hypotheses must then be validated by actually engaging with patients.
This multi-layered data should overlap in terms of depth of patient experience and market-level scale. An effective combination might include quantitative, patient-reported data, behavioral analytics, and qualitative insights around what patients are actually thinking and saying.
When designing services to provide the optimal patient experience make sure you use HEOR and RWE research and insights to generate data-driven strategies that engage with key opinion leaders on disease states; ensure market access by communicating value to payers in product management; and sustain adherence by building strong relationships with providers.
Most importantly, build patient trust and loyalty by engaging patients/caregivers at various stages of their therapy journey to identify obstacles and challenges in order to drive awareness programs, education, and support services that promote adherence and better health outcomes. Patients will be the biggest advocates if they are kept involved, so ensure that lines of communication are always open.
Also, monitor these key data points to understand the impact of speed to therapy as patients enter their treatment journeys:
- Verify benefits by tracking prior authorizations, appeals, and financial hurdles to quickly eliminate barriers.
- Track handoffs to others in the service continuum, such as physicians and payers for prior authorizations, and pharmacies for timely shipments.
- Monitor adherence to ensure timely refills, provide education to manage side effects, and identify any ongoing payer or financial challenges.
Life sciences companies have access to more real-time patient data than many know what to do with it. Electronic health records, genomics, prescription and payer data, health-related apps, and patient-reported outcomes all provide valuable insights into what a patient looks like, how they access healthcare, co-morbidities, standards of care, health outcomes, and physician treatment practices. These data sources can be exceedingly valuable in understanding patients’ journeys and points of care, as well as improving the patient experience.
By leveraging patient data, companies can evaluate the impact of certain inclusion and exclusion criteria against patients in a real-world setting. Intra-protocol activities and endpoints can be mapped to overall objectives to determine if more procedures/data are being requested than needed.
Patient data can also be used to support better site selection practices. Historically, sites have been asked to estimate their enrollment potential, and regardless of the response, the industry always cut this figure in half to determine the average study enrollment rate. Now, with the abundance of patient data, we can pinpoint institutions treating the desired patient population and triangulate actual patient numbers with prior performance data to derive an expected enrollment rate with greater precision.
One way to build patient trust is to communicate with patients simply. Giving them information that is useful and plain-spoken without compromising regulatory guidelines can go a long way in developing a strong relationship with patients. Because of the risk-averse environment we live in, we have surrounded ourselves with complex language that is meant to protect the patient, the provider, and the company. In the process, we’ve forgotten that the very customer who could benefit from the brands we market can’t understand what we’re trying to communicate. This complex approach to communication only leads to misunderstandings and distrust.
Some companies have identified this issue and are working to help patients better understand their healthcare. For example, Bristol-Myers Squibb launched an initiative called UPL, or universal patient language, in an effort to explain medical terms simply. The pharma company brought in patients and asked them to participate in several working sessions, leading to a set of seven principles for creating content that is easier to understand and learn. The end result is greater patient trust and a stronger relationship.
To ensure more authentic interactions between patients and life sciences companies, patients need to be included at every step of the way, from clinical trial planning to post-approval marketing to the development of patient support programs and beyond. For this purpose, establishing patient advisory boards for gathering insights and getting the patients’ point-of-view is invaluable.
Importantly, these interactions must be ongoing and frequent, rather than “one-offs.” The patient advisors should ideally be demographically diverse to allow for multiple perspectives to be shared. If travelling to in-person consultancy meetings is not feasible due to the patient advisors’ health or busy schedules, moving the conversation online using a secure space where the advisors can contribute on their own time is a highly effective option. Alternatively, if choosing to conduct yearly or twice-yearly in-person meetings, this helps fill the “white space” between these meetings and prepare the advisors for what will be discussed.
Of course, this is just the starting point: Life sciences and pharma companies then need to actually act on the patient advisors’ suggestions. However, if or when they do, they are almost certain to create more trusting relationships with all of their patients as a result.
In such a regulated environment, it can often seem impossible for healthcare brands to forge real connections with patients, but it is possible and companies who are brave and creative enough to do it will reap the rewards.
My favorite recent example is “Hemophilia: The Musical,” sponsored by BioMarin Pharmaceutical. Kids with hemophilia and other bleeding disorders cannot participate in sports activities—the risk of bleeding from even a minor injury is just too threatening. However, acting is an activity these patients can do, so BioMarin organized a musical about hemophilia featuring a cast of kids who all had bleeding disorders. The event served several purposes: It helped patients communicate to their caregivers (and the public via PR and attendance) what it’s like to have a bleeding disorder; it connected patients as a community; and it put BioMarin at center stage, creating goodwill with the community and making it clear they understand the patient experience. BioMarin is continuing this effort by sponsoring theater workshops for kids with bleeding disorders all over the country.
More brands should boldly break out of the marketing bubble and find ways to authentically interact with their audiences.