Despite significant advances across oncology care, cancer persists as the second leading cause of death in the U.S. In 2022, over 1.8 million new cancer cases were reported and in 2023 over 600,000 people died of cancer. The patient-centered approach has surfaced as a critical pathway to reaching patients early and promoting better health outcomes. These numbers underscore a hard truth: scientific innovation alone is not enough. To improve outcomes, we also need approaches that reflect how people experience cancer, before diagnosis, during treatment, and long after.
This is where patient engagement comes in. Pharmaceutical companies recognize that patient centricity is no longer a “nice-to-have,” but the standard. As nationally respected patient advocate Beverly Canin emphasized, “’Nothing about us without us’ is a centuries-old value that is a cornerstone of meaningful patient engagement in clinical research.” The principle is simple and enduring: care and research are better when patients are meaningfully involved in shaping them.
Despite widespread acknowledgment of this principle, a significant gap persists between how companies talk about patient engagement and how they actually practice it. A 2025 study found that while pharmaceutical industry professionals understand the importance and benefits of patient engagement, barriers such as time, resource constraints, and lack of cultural competency (e.g. lack of understanding of cultural norms, expectations, and healthcare structures), hinder their ability to prioritize patient engagement. The result is a familiar disconnect where even the most innovative therapies can miss their mark if patients don’t fully understand their options or aren’t supported to stay on treatment.
So, what does good patient engagement look like in oncology today?
The future of oncology care is not only patient-centered, but patient-led. It goes beyond listening sessions or one-time consultations. Good engagement shows up early, is sustained over time, and shares influence, not just input. When companies invest in collaborative relationships with patients and patient advocacy groups (PAGs) – and position them as equal partners rather than consumers – the results are both more impactful and sustainable.
What Good Patient Engagement Looks Like in Practice
Through our work with clients, we’ve learned the strategic imperative of authentic patient engagement. When done well, it improves patient outcomes, strengthens trust, and supports long-term success for companies.
Below are practical ways companies can move from intention to action and what “good” patient engagement looks like in the real world.
1. Build With Patients, Not For Them
Patients are experts in their own experience. When PAGs drive development of strategies to improve access to cancer care, solutions reflect real patient priorities, leading to greater impact.
Positioning patients as co-developers, rather than end-stage reviewers, stands to transform the drug development process from research & development (R&D) through to sustainability. Jill Feldman, co-founder of lung cancer PAG EGFR Resisters, captured it in this way:
“We would work with an organization, use their fundraising platform, their science team to vet different projects, but it was patient-led…It became the epitome of research partnerships with patient advocates. It’s incredible.”
In practice, this can start with companies creating a patient and caregiver advisory board to inform strategy development and refinement – before decisions are finalized, not after.
2. If You’re Missing Caregivers and Underserved Patients, You’re Missing the Full Picture
Patients are not the only stakeholders playing a role in the cancer treatment journey. Oftentimes, caregivers are engaging closest with the care continuum and should also have their voices reflected.
Simultaneously, companies have a responsibility to engage members of underserved populations to ensure strategies represent the wider population of individuals impacted by cancer. Without intentional outreach, voices from underserved communities are often left out, resulting in strategies that don’t fully address real-world barriers.
Operationally, this might mean designing separate caregiver tracks within patient engagements or partnering with oncology-focused community health organizations to reach underserved populations. The goal is not representation for its own sake, but better, more informed decision-making.
3. Trust Isn’t Built in One Meeting
Trust grows through consistency. Companies need to show up regularly – not just in key moments – with patients to build trust. This starts with shifting patient engagement from event-based to relationship-based.
One way to streamline this practice is by setting up regular touchpoints with patients, caregivers, and PAGs to understand their priorities, listen for emerging barriers to cancer care, and remain responsive to their needs. Showing up consistently signals genuine connection, creates a trusting partnership and results in long-lasting engagement and impact.
4. Strong Partners Need Strong Infrastructure
Supporting PAGs only through short-term programs can limit the depth of partnership. Investing in PAGs beyond programming proves that companies are committed to maintaining them as valued partners. Companies can support PAGs with operational grants to support their staffing, training, and other resource needs.
When PAGs are adequately resourced, they can operate strategically, rather than reactively. They have the bandwidth to think long-term, invest in expertise, and engage more meaningfully. This allows partnerships to move beyond transactional exchanges toward shared planning and sustained progress.
5. Be Clear About “Why” On Both Sides
Transparency is foundational to trust. When initiating engagement with PAGs and patients, it is important that companies are upfront not only about their patient goals, but how those intersect with their commercial goals across oncology.
Being upfront about priorities, constraints, and decision-making processes helps set realistic expectations and creates relationships grounded in mutual respect and trust. Transparency also enables more meaningful patient insights needed to shape strategies so that therapies reach the people who need them.
Benefits of patient engagement:
Patient engagement stands to benefit companies, patients, and PAGs alike. When executed with patients as the driving force, this work can promote treatment adherence, facilitate trusting partnerships between pharma and the patient community, and bring therapeutics to market faster, ultimately leading to improved patient outcomes.
Patients Stay on Treatments They Help Shape
Increasing patient engagement at an early stage reduces lack of understanding of the treatment pathways and encourages initial uptake and adherence, resulting in improved health outcomes. Engaged patients are more likely to take their medications as prescribed, resulting in fewer complications, unnecessary visits, and emergency hospital admissions. This means more patients are likely to take and remain on therapeutics with a lower chance of treatment drop-off. Medication non-adherence is estimated to cost the pharmaceutical industry hundreds of billions of dollars annually. Additionally, understanding barriers to cancer care from a patient perspective creates an easier pathway to address and overcome these barriers, getting more patients access to treatment.
Trust Changes Everything
Beyond outcomes, patient engagement shapes how companies are perceived by the patient community. When patients and advocacy groups see companies listening, and acting on what they hear, relationships shift.
Trust builds credibility. Credibility leads to advocacy. Over time, companies that invest in authentic engagement are more likely to be viewed as genuine partners in care, not just product developers.
Better Engagement Leads to Faster, Better Research
Engaging a diverse population in clinical trials stands to not only improve results, but streamline the R&D process altogether. This engagement can increase the chances of large and sustained recruitments, reducing the timeline to new drugs. Research “with” or “by” the public rather than “to” or “for” them, has been shown to achieve higher enrollment and retention rates. Investing in the patient-led approach from R&D to sustainability can result in new therapeutics being launched significantly earlier, underscoring the impact of genuine patient engagement.
What This Looks Like in the Real World:
While patients and PAGs are often used interchangeably, it is important to note that they are different groups with different sets of priorities. Engagement models should reflect these differences. Here are three examples of how companies can engage authentically with patients, caregivers, and PAGs to produce the most impactful results:
1. Create Spaces Patients Actually Need: Patient and Caregiver Summits
Summits are an opportunity to bring oncology patients and caregivers together for learning, connection, and support – meeting needs that often go unmet outside the clinic. By partnering with PAGs, companies can help fund and facilitate these gatherings while listening directly to the lived experiences of patients and caregivers.
Summits create space for peer-to-peer exchange and access to expert perspectives and emerging research and care, building trust and shared understanding. What sets these experiences apart is the sense of community and emotional support alongside education and insight generation. Impact should also continue well beyond the event, with learnings used to shape patient engagement strategies that keep the community meaningfully involved over time.
2. When Advocacy Groups Align, Impact Scales: PAG Roundtables
Roundtables allow companies to serve as conveners, offering PAGs a platform to articulate their priorities, share resources, and align on strategies to drive broader change, including policy impact.
These focused, one-day convenings bring PAGs together to discuss barriers to care and identify practical, collective approaches for addressing them. While summits serve as a chance to connect, roundtables are designed to align PAGs around a common goal and generate actionable next steps. Companies can also serve as an accountability partner, supporting PAGs in executing next steps and identifying additional opportunities to convene and report on impact.
3. Listening Regularly, Not Occasionally: Patient Advisory Boards
Patient advisory boards provide a structured way to engage patients, caregiver, and advocates on an ongoing basis . When designed intentionally, they offer insights into barriers to care, unmet patient needs, and real-world experiences across the healthcare system.
A thoughtful selection and interview process is essential to ensure the board reflects the diversity and perspectives of the community it aims to represent. Following each meeting, companies should synthesize feedback and apply these learnings to guide ongoing decision-making and execution, closing the loop and reinforcing trust.
Different Formats. Same Principles.
Whether summit, roundtable or advisory board, authentic engagement initiatives share core features:
- Those impacted most directly by cancer lead in convening and content design
- Companies co-create and provide support where needed, without controlling outcomes
- Success is defined by patient-prioritized impact
- Relationships deepen beyond the event itself through sustained follow-up and partnership
From Transactional to Transformational
Patient engagement has evolved. It is no longer about consulting patients on pre-designed solutions, but about inviting them to co-create from the start. For companies serious about meaningful impact, the question is not whether to engage patients, but how to do it authentically.
Companies can evaluate their patient engagement model by asking themselves:
- Are initiatives sponsored or co-developed?
- Are PAGs engaged regularly or only when needed?
- Are we investing in PAG capacity or just their programs?
These distinctions can define whether a relationship is transactional (one-time events, surface-level input) or transformational (sustained and equal partnership). Companies that embrace a patient-led dynamic and take the steps to improve their patient engagement stand a better chance of driving improved patient outcomes and eliminating cancer as a leading cause of death.
From Intention to Impact
When patients are treated as partners, not participants, engagement becomes a driver of real-world change.
Patient engagement is at an inflection point. As expectations rise and healthcare systems grow more complex, the companies that will lead in oncology are those willing to rethink how, and with whom, they work. “Good” patient engagement is no longer defined by activity, but by impact: earlier involvement, shared decision-making, sustained partnerships, and clear follow-through.
For pharmaceutical companies, this shift represents both a responsibility and an opportunity. When patients and advocacy organizations are treated as true partners, strategies become more grounded, programs become more effective, and therapies are better positioned to reach the people they are designed to help. The result is not only stronger patient outcomes, but more credible, resilient engagement models that stand the test of time.
Getting there, however, requires more than good intentions. It takes deep understanding of the patient and advocacy landscape, the ability to bridge public health priorities with commercial realities, and the experience to translate insight into action. At Rabin Martin, we work alongside pharmaceutical companies, patients, and advocacy partners to design patient engagement and alliance strategies that are practical, durable, and rooted in lived experience. Because when patient engagement is done well, it doesn’t just check a box, it helps change what’s possible in oncology care.