While progress has been made in patient-centricity and engagement, significant opportunities remain. From mitigating unintentional blind spots and earning trust, to navigating changing patient expectations and tech-enabled engagement opportunities, pharmaceutical companies have the opportunity to make EVERY PATIENT POSSIBLE by engaging meaningfully with the right people at the right time to deliver the right solution.

 

Trust, transparency, and moving beyond tokenism

The relationship between pharmaceutical companies and patients remains hampered by deep-rooted mistrust stemming from past data breaches, lack of transparency, and limited patient agency in decision-making. While ‘patient-centricity’ is nearly ubiquitous in industry vision statements, the reality can fall short of true partnership.

For example, recent data published by PatientView surveying more than 2,500 patient organizations globally, showed patient perceptions of the biopharmaceutical industry have declined during the past two years. The respondents were unanimous in their desire for greater pricing transparency, a deeper understanding of the realities of patients’ day-to-day lives, and for patient involvement across the drug development and commercialization process. The report summarized the state of the relationship, stating: “If the pharmaceutical industry is to continue to advance healthcare, it needs to do more than just consult patients and patient groups; it needs to build strategies and activities with them.”

Regulatory structures created to protect and empower all stakeholders can unintentionally hinder patient engagement. Adherence to compliance standards can create delays to bringing patients into the process, with the need for expediency resulting in little time left over to ensure participation of excluded groups. However, as one industry speaker noted, barriers to engagement will always exist, but we have an obligation to identify what is in our control and take action to bring in patients early and often.

Organizations such as the British Healthcare Business Intelligence Association (BHBIA) have published guidance on consistently engaging with patients. By standardizing processes, templates and operating procedures, biopharmaceutical companies can streamline and simplify the process, making it easier for patients to partner with them.

Trust is built through consistent, meaningful involvement that brings patients into the process as co-creators, not intermittent consultants or passive end users.

To achieve the best outcomes for patients, a mindset shift is needed. While being patient-focused shows the good intentions of pharmaceutical companies, it is important to reframe the patient impact as a starting point, not an end goal.

 

Key takeaways

• Embedding patients and patient advocacy groups in processes at an early stage and in a meaningful way is crucial for a truly patient-first approach.
• Transparency on data usage and how patient input shapes decisions can go a long way to building trust and repairing historical harms.
• Seek to understand your audience, prioritise shared language and understanding over technical terminology.

 

Inclusivity in clinical trials

Clinical trial design is under increased scrutiny for failing to reflect the diversity of real-world populations. Too often, patients are not represented accurately in clinical trials due to expediency, unintentional blind spots on the part of organizers, or socio-economic factors, leading to omissions in the study that impact the efficacy of treatments for all eligible patient populations. Equity in access goes beyond eligibility; it includes the practical realities patients face, such as transportation, caring responsibilities, and language barriers.

When patient advocacy groups and patients are involved from the outset in creating patient-defined endpoints and trial criteria, they can reshape protocols to address gaps and define success on more holistic terms. While pharma companies may identify ‘quality of life’ as an end goal, it is challenging to understand and quantify what the term truly means for patients.  For example, one speaker at the Patient Centricity & Engagement Conference described how ‘symptom reduction’ as an endpoint means very little to most patients. Patients’ endpoints are personal to them, for example, one patient spoke about the importance of being able to braid her daughter’s hair again. Understanding these individualized goals takes time but brings clear benefits. These endpoints breathe life and colour into the product benefit, drive communications that resonate with patients and physicians and, most importantly, ensure the solutions we deliver better meet the specific needs and goals of our patients.

Inclusivity takes many forms and requires as unique an approach as the members of the patient populations we serve. Trials must represent all potential patient populations and go beyond clinical datapoints to achieve meaningful and holistic outcomes.

 

Key takeaways

• Equal access to clinical trials isn’t just a moral imperative, but a necessity for ensuring treatments are effective for every patient.
• Treatments are ultimately developed for patients, and quality of life looks different to different people. It is imperative to treat patients as individuals with unique desired outcomes instead of generalizing or making assumptions.

 

The empowered patient and changing institutional trust

Expectations have changed: today’s informed and savvy patients prioritize more control over decisions about their health, including shared decision-making and equal partnerships. They also appreciate different types of care, including emotional support and support with quality of life, along with services and products that align to their values.

Changing consumer behavior in the past decade has influenced all markets, with significantly more choice available to today’s customers. Big brands are no longer the only choice for consumers, who are more able than ever before to choose brands that align with their personal values, ethics, or lifestyle factors. Patients are people too and they are undergoing the same shift in how they make brand choices. This presents a challenge for companies that saw longevity as a major marketing boon. They must now adapt to new avenues to appealing to consumers in the commercial space as well as providing crucial healthcare information.

In addition to these behavioral and ideological shifts, significant disparities remain with gender and ethnicity influencing how patients are perceived, prioritized, and treated by the healthcare system and pharmaceutical industry. In the UK, 76% of women feel they need to be more assertive to get the care they need, but fear being labeled as pushy or demanding, and 23% of ethnic minority adults do not trust pharmaceutical companies to test treatments and devices on them. A change is needed to reach patients where they are and to earn back trust from centuries of historical harms.

 

Key takeaways

• Shared decision-making is critical to patient empowerment and engagement, and highlighting benefits beyond efficacy and endpoints is a key area where patient loyalty and trust can be won.
• To meet patients where they are, manufacturers must find the balance between regulatory and compliance barriers and their aspirations to liaise better with patients. Communicating through patient advocacy groups, health influencers, and digital platforms meets patients on their own ground and in spaces where trust is higher.

 

Leveraging technology and AI to engage at pace and scale

For many patients, the rise of AI tools has significantly expanded the digital healthcare landscape. With capabilities broadly categorized as automation, prediction, and classification, it is evident that AI is becoming increasingly ingrained in processes across the product lifecycle and healthcare professional-patient interactions.

Despite digital health influencers and platforms like ChatGPT gaining ground as everyday health resources, trust in traditional institutions is declining globally. Wider availability of information has led to the rise of the ‘informed patient.’ The doctor no longer represents the sole source of medical information; patients are actively researching conditions and symptoms on their own, often turning to non-traditional sources for guidance.

In the future, patients may be able to use AI platforms to interpret test results, aid the diagnosis of their disease, and consolidate disparate data on their condition and any co-morbidities. This advice could help reduce the time to diagnosis and drive more personalized care, with patients able to prompt the model to tailor advice to their specific condition, lifestyle, and concerns.

 

Key takeaways

• Technology can help pharmaceutical companies move from speaking at patients to creating a dialogue at the right time for maximum efficacy.
• AI tools can synthesize information and enable healthcare professional-patient interactions on more equal footing, but it is key to ensure that patients do not over-rely on self-serve tools that do not include human oversight and validation.
• Biopharmaceutical companies can provide further support in helping patients to leverage AI accurately, for example, by creating patient brochures on prompting the technology for best results.

 

From tokenism to triumph

Patient-first thinking isn’t a tagline, but a societal and systemic shift – a sea change that has limitless opportunities to evolve and grow.

At Avalere Health, we are on a mission to make EVERY PATIENT POSSIBLE. We are building a world where every patient has their voice heard; where they can feel confident that their treatment was created with them in mind, and where they are treated as a whole person, not just their disease. We believe that this world is not just possible, but imperative.