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Unlocking the power of co-creation: Patient communities and pharma

Historically, the pharma industry has made decisions on behalf of patients throughout the development and product lifecycles of therapies and diagnostics. However, recent evolutions in the healthcare environment have empowered patients to play a more active role in healthcare decision-making, demanding a greater focus on patient-centricity and engagement within the industry. As a result, companies have increased their collaboration with patient communities, including patient groups, patient organisations, patient advocacy groups, expert patients, individual patients, caregivers and family members, to create meaningful value for patients, the industry, the healthcare system and society as a whole.

A natural partnership

Patient communities and pharma/biotech companies share a universal vision: helping every patient live longer and healthier lives through innovative medicines and diagnostics. 

Managed correctly, relationships between pharma and patient communities can be mutually beneficial. While pharma possesses the scientific expertise, resources, and capacity to develop innovative therapies, patient communities offer invaluable insights into the lived experiences, challenges, perspectives, and unmet needs around illness, whether it be acute or chronic. By combining these complementary resources, pharma-patient partnerships ensure that the industry focuses on the fundamental vision that unites them.

From clinical trial design and implementation to drug development and market access, patient partnerships offer unparalleled value for pharma. Patients’ unique experiences, expertise and perspectives can be communicated company-wide and incorporated into the development of therapies and diagnostics. Patient communities benefit from leveraging pharma companies' resources, authority and expertise to promote awareness, secure funding, and drive significant change at a broader scale. Patients are empowered by having a voice during decision-making and often benefit in terms of healthcare provision as patient communities help to develop trial protocols and establish endpoints and solutions that matter most to patients and lead to treatments that effectively meet their needs. Patient communities also remain the ultimate conduit for communication between patients and pharma, offering direct channels to relay accurate and important information to patients. 

An Accenture report of 4,000 patients in the U.S. and Europe showed (1):

  • Most patients — 84% — believe that patient organisations should be working together with pharma companies 

  • 37% of patients said that they believed pharma would better understand their needs if collaboration with patient organisations was improved

  • Among the top benefits that patients believe would result from a better level of collaboration:

    • 56% cited easier access to information on their condition and treatments  

    • 56% cited easier access to treatment  

    • 54% cited more personalised care

Barriers to successful partnerships

Driven by a foundation of shared goals, long-term partnerships offer the commitment and perseverance to drive true system and policy change, generating results and traction that aren’t possible alone. But how symbiotic is the seemingly win-win relationship between pharma and patient communities? Not as extensive as it could be. 

While 93% of pharma executives overwhelmingly agree that patient centricity is critical to their company’s future success, only 19% believe they have made meaningful progress to date (2)

The pharma industry may hide behind compliance as an excuse not to engage with patient communities. In turn, those communities may fear a loss of independence regarding questions about financial donations and possibly distrust pharma’s motives.

However, rather than thinking of regulatory limitations, pharma must consider untapped partnership opportunities that leverage data, analytics, and real-life insights that can, collectively, improve patient care. By continuously listening and harnessing the power of the patient voice, co-creating solutions and turning insights into specific actions, pharma can meaningfully partner with the patient community to simultaneously improve the patient experience whilst reaping commercial benefits.

The ingredients for a successful partnership

Regardless of whether the patient community and advocacy space is crowded or there are only one or two key players, which is common in rare diseases, the approach should remain the same - establish a relationship built on trust and transparency from the start. This ensures complete alignment and understanding of the goals, expectations and deliverables of what each party anticipates from the relationship. Patient communities can alleviate their members' concerns about losing independence by demonstrating transparency and communicating the impact of the partnership.

Acknowledging that patient engagement is no longer a ‘nice-to-have’ but a fundamental ‘must-do’ for pharma is crucial in acquiring longer-term investment for success in an ever-increasing patient-focused future. 

Synthesis is a specialist medical communications agency that provides meticulous editorial support across all stages of medical manuscript development and submission. Contact us at to find out more about how we can help you develop publications that showcase the crucial insights and co-creation of solutions gained from patient partnerships to lobby for change.