What you’ll learn

• What patient advocacy is and how it has evolved in today’s healthcare landscape 
• Ways that patient advocacy groups support and empower patients  
• How patient advocacy leads to better health outcomes for patients, providers, and the healthcare ecosystem  

What is patient advocacy?

Patient advocacy ensures patients’ voices are heard and their rights are protected within the complex healthcare landscape. Advocates dedicate themselves to helping patients navigate the healthcare system, secure essential care, and shape policies that define the future of healthcare. Their efforts bridge the gap between patients and the healthcare system, ensuring every individual receives the care and respect they deserve. 

What do patient advocacy groups do?

• Empower Patients: Patient advocacy groups empower patients to be active participants in their health journeys, rather than passive recipients of care. This empowerment comes through education, support, and encouragement, helping patients understand their conditions and treatment options. 

• Provide Information and Resources: These groups help patients make informed decisions by providing critical information, resources, and support. From explaining medical jargon to assisting with insurance issues, they help patients overcome barriers to care.  

• Drive Policy Change: Advocacy groups drive policy change to improve healthcare access, quality, and equity. They work to ensure all patients are treated with respect and dignity throughout their healthcare journey, influencing legislation and healthcare policies to better serve patient needs. 

Challenges for patient advocacy

Historically, patient advocacy groups have often been met with apathy and mistrust. Pharmaceutical executives “viewed patient advocates as more focused on raising money than in partnering, and they did not see patient advocacy organizations as critical to their business,” shared Terri Clevenger. This lack of understanding about the vital impact of these groups, along with the intensive and time-consuming nature of building relationships, has led organizations to struggle with allocating resources for dedicated personnel and continuous engagement. Additionally, differences in communication styles, expectations, and organizational cultures have created barriers to effective collaboration. 

Furthermore, in the highly regulated biopharma industry, companies have been concerned about compliance and regulatory issues, particularly regarding privacy and data protection. Understanding the stringent regulations governing interactions between pharmaceutical companies and patient advocacy groups is crucial for the well-being of patients, yet it makes navigating the legal landscape challenging. 

Fortunately, there has been a much-needed shift in perspective. Today’s biopharma and life science companies recognize the value of growing collaboration with patient advocacy groups. This change is beneficial for both providers and the patients they serve, fostering a more supportive and effective healthcare environment. 

How does patient advocacy impact patient outcomes? 

1. Enhanced Patient Satisfaction  

By addressing patient concerns and ensuring their voices are heard, patient advocacy improves patient satisfaction. Advocates listen to patients’ needs and preferences, working to ensure that their care is tailored to their individual circumstances. This personalized approach leads to a better healthcare experience and higher levels of satisfaction. 

2. Improved Treatment Adherence 

Advocacy groups help patients understand the importance of their treatment regimens and assist them in overcoming obstacles that may hinder adherence. This support can be critical in managing chronic conditions and ensuring effective treatment outcomes. Patients are more likely to adhere to treatment plans when supported by advocates who provide guidance and encouragement. 

3. Improved Health Outcomes 

Advocacy interventions lead to improved health outcomes through personalized care and support. Advocates work closely with healthcare providers to ensure that patients receive the best possible care, tailored to their specific needs. This can include coordinating care among different providers, helping patients understand their treatment options, and ensuring that they have access to necessary resources and support. 

4. Reduced Healthcare Costs 

By promoting preventive care and early interventions, patient advocacy helps reduce healthcare costs associated with advanced treatments. Advocates encourage patients to engage in preventive health measures, such as regular check-ups and screenings, which can catch health issues early when they are easier and less expensive to treat. This proactive approach not only saves money but also leads to better long-term health outcomes for patients. 

The future of patient advocacy

Patient advocacy plays a vital role in improving patient outcomes. By enhancing patient satisfaction, boosting treatment adherence, improving health outcomes, and reducing healthcare costs, advocates ensure that patients receive comprehensive, compassionate, and cost-effective care. As the healthcare landscape continues to evolve, the role of patient advocacy will remain crucial in shaping a more patient-centric system. As Amicus Therapeutics’ Chief Patient Advocate Jayne Gershkowitz said, “I see the Chief Patient Advocate role becoming even more central to the overall purpose and strategies for achieving organizational goals across the rare disease space and into the broader pharmaceutical and biotechnology market.”  

How can BioLaunch Solutions help?

At BioLaunch Solutions, we understand that many organizations are unable to immediately dedicate a full-time patient advocate position. We work with biopharmaceutical and life science companies to provide fractional opportunities to develop and support their patient advocacy efforts.  

With a patient engagement strategy, the BioLaunch Solutions team:   

• Partners with patient groups to amplify the patient voice 
• Leverages advocacy insights to shape research priorities 
• Navigates the regulatory landscape with patient input 

By offering patient engagement frameworks and blueprints, our strategic approach can lead to faster drug development, improved clinical trial design, and more effective treatments. Want to learn more about patient advocacy? Contact us today and see how we integrate patient advocacy, centricity, and experience into our engagement strategies.