How Biotechs Can Better Support Patient Communities

Engaging Patients: How Biotechs Can Better Support Patient Communities

As biotech companies develop treatments for the world’s most complex and devastating diseases, patient advocacy organizations will play a role in every aspect of the drug development process. From clinical trial design to FDA advisory boards to drug launches, biotech companies must engage patient advocacy organizations and have consistent, meaningful interactions to develop the next generation of therapies.

Over the past decade, the biotech industry has begun engaging more with patient advocacy organizations to include the patient perspective and voice into their processes. For instance, the Biotechnology Innovation Organization (BIO) created the Patient Advocacy Pavilion for its annual international convention. The 2018 Patient Advocacy Pavilion this past June brought together more than 60 advocacy organizations to collaborate, share ideas about how to bring the best medicines to patients, and discuss the importance of including the patient voice in the drug development process. BIO will also host the upcoming BIO Patient and Health Advocacy Summit, which will bring together patient advocacy organizations, academia, regulators, biotechnology industry and other stakeholders for two days of robust programming to discuss timely policy issues and share best practices.

Given the role that patients play in the drug development and discovery process, biotech companies must have strategic plans to engage patients. Here are some of our recommendations.

Don't wait for the patients to find you, go find the patients

Patients newly diagnosed with a disease look for support in many places. Although the first place they often turn is an advocacy group related to their condition, they also seek out support in social and digital forums. They are looking to connect with peers who can provide emotional support. Biotech-led patient advocacy campaigns should include social media and digital components that provide support and resources, connect patients to one another and allow patients to share real-world experiences. Shire’s “Discover HAE” campaign not only provides disease information, but also patient testimonials and links to resources about the larger HAE community.

Put a face on the disease

Patients who have struggled to find a correct diagnosis are often looking to share their stories to shed light on their diseases and inspire others. Putting a face and a story on a specific disease humanizes it. Patients are also empowered because they are able to share their personal journey and let people know that they are more than their condition. This can be done through earned media opportunities, creating video patient testimonials, social media campaigns or by composing patient story booklets. A great example of this is the Vertex Pharmaceuticals “Voices of CF Campaign” that shares the stories of cystic fibrosis (CF) patients and their caregivers.

Bring people together

We all live in a technology-driven world and use video messaging and social media. However, nothing can compare to bringing people together to share experiences and inspire one another. This can be done in a number of ways and can include everything from an intimate gathering of key stakeholders, a symposium or a patient event. The most important thing is to provide opportunities for patients, caregivers and the medical community to share experiences and provide insights in a nonmedical setting.

It is important to note that engagements with patient advocacy groups are not “one and done” events. To get the most valuable information and insights that inform the biotechnology and advocacy communities, campaigns must be high-touch and engage all stakeholders consistently.

Patient advocacy organizations have played a large role in empowering patients and providing the tools, resources and emotional support needed. In addition, they have been an integral part of disease awareness campaigns that mobilize patients and drive policy agendas. With the help and support of advocacy organizations, today’s patients have access to vast amounts of information and are better able to drive their healthcare decision-making processes. However, as the biotech industry looks to increase its engagements with patients, it must have long-term strategic communications plans for working with patients and advocacy organizations to foster meaningful relationships with patients, gain valuable insights for the drug development process and become trusted voices within the treatment paradigm.