For over 30 years, VOZ has partnered with biopharmaceutical teams in building and deepening relationships with patients, care partners, and patient advocacy groups to support mutually beneficial relationships anchored on the value of the patient perspective. While each engagement is unique, our collaborations put a fine point on the importance of convening, co-creation, and community engagement – the three C’s – to accelerate trust, insights, and actionable solutions.
1. Convening Many Voices Accelerates Actionable Solutions
Patients, care partners, and patient advocacy organizations provide critical insights into living with a disease. All too often, these insights are siloed from health care providers and others who provide critical care and support.
As an example, VOZ partnered with a client to better understand the care and treatment challenges of people diagnosed with a chronic autoimmune condition. To accomplish this, the company’s patient advocacy team evolved its role by shifting from patient advisory board “listener” to multi-stakeholder convener, bringing together providers, patients, and patient advocates who rarely have the opportunity to collaborate with each other. This forum helped bridge gaps in understanding challenges and resulted in the creation of an infographic resource for patients and providers to support informed treatment decision-making.
2. Co-Creating with Patients Strengthens Evidence
Clinical measures alone rarely capture the full reality of living with a disease, particularly for those marked by stigma and invisible symptoms.
Recently, VOZ partnered with a client to deepen their global understanding of diagnostic delays and medical decision-making among people living with a chronic neurological disorder. The team co-created a research survey project with 35 patients across seven countries and partnered with patient advocates as co-authors on posters and publications, highlighting the experiences of patients and caregivers in three countries. This work also led to a workshop hosted at a major global conference to not only share research findings but also encourage continuous dialogue with the medical community.
Presenting findings in scientific and medical settings with the community not only raised awareness about stigma and the unknowns of this condition among researchers and clinicians, it also demonstrated the value of co-creation with expert patient advocates.
3. Community Engagement Furthers Access
Patients and families navigating a rare disease need access to information that is clear, written in plain language, and easily accessible, particularly when a new treatment becomes available.
VOZ partnered with a client launching a new therapy for a rare genetic disorder to ensure that the community engagement efforts extended beyond standard press releases. Tailored communications were developed and shared with four advocacy groups and their broader communities to ensure that patients and families could easily understand information about the treatment itself, and how it may impact their care.
There is no “one size fits all” when building and maintaining authentic partnerships. At VOZ, we ensure that each unique engagement drives toward mutually beneficial outcomes for companies and patients. Focusing on the three “C’s” of convening, co-creation, and community engagement consistently provides a pathway to these outcomes.
– Ronnie Todaro, President & CEO at VOZ Advisors
