Demonstrating commitment to patients is essential to building strong relationships, especially in the rare disease community. One way to achieve this is through patient advocacy groups (PAGs), because they play an important role in centering patients within the complex healthcare universe. Life science companies must demonstrate to PAGs that they're invested in making a difference for patients—and that they aren't just looking at the bottom line.
PAGs are facilitators and connectors across diverse healthcare stakeholders, including providers, payers, life science companies, policy makers, regulators and caregivers. PAGs participate in programs that impact medical research, drug development, clinical trials, regulatory processes, disease education and treatment education, among others.
The impact PAGs have on the development of new medicines and therapies is vital, so it’s only logical that life science companies collaborate with these groups. However, this is not without controversy since patient groups often receive financial support from life science companies. This has raised questions surrounding conflicts of interest, such as what type of influence the industry has on PAGs.
Let’s examine how companies can engage with PAGs to ensure transparency to create a program that delivers valuable benefits to their community. For a broader perspective, MERGE’s life science experts created a guide that takes a fresh look at three tried-and-true tenets of rare disease marketing that you can read. And make sure you get on our list! Sign up to receive MERGE's insights for life science organizations.
Five Actions to Consider for Patient Advocacy Engagement
1. Do your homework
Everyone’s time is valuable. Each PAG, no matter if in the same disease area, is different and so is its needs. Some might be focused primarily on providing patient and caregiver support, while others are focused on research. Regardless, it is important for life science companies to research PAGs and understand the types of programs they do and who their past collaborators were. A methodical research phase narrows the list of PAGs for direct outreach. By investing time upfront, you will save time, money and frustration for everyone.
2. Cultivate Trust
Truly successful collaborations between PAGs and life science companies are built upon a foundation of respect, understanding and trust. The first step to build a mutually beneficial relationship is to listen and fully understand what each party needs and what it brings to the collaboration so it can ultimately benefit patients.
3. Build Relationships
Life science companies must think in terms of how do I build a sustainable relationship? and not how do I execute a transaction? There should always be an open, two-way dialogue so both parties can clarify their wants, needs and expectations honestly. By creating this type of communication and collaboration, companies and PAGs can become open to input and aligned to avoid missed expectations.
4. Demonstrate Commitment
Larger life science companies often have dedicated patient advocacy departments that are deeply experienced and ensure the PAG’s point of view is valued at the company. At smaller life science companies, there might be no one experienced in working with PAGs. In this case, it is important to involve senior leadership to demonstrate the importance of the collaboration and to build trust. And most importantly, successful collaborations go beyond the financial support. Life science companies who engage their employees to attend fundraising events and to volunteer their time to support PAG patient support programs can truly separate themselves from their peers.
5. Establish Community
In today’s healthcare community, there are many PAGs that companies may consider, and it is a best practice to avoid exclusive relationships because such arrangements pose risks to both organizations. A life science company should always be monitoring the environment for potential collaborations and should avoid becoming a financial “lifeline” for program support for a PAG. This scenario not only creates the perception of a conflict of interest, but also limits the impact both parties ultimately have for patients.
PAGs play an incredibly important role for patients and life science companies, especially those focused on rare diseases. Life science companies should actively seek out PAGs to build reciprocal relationships to ensure patients remain at the center of the healthcare universe. If you’re curious how MERGE can help you build a community founded on partnership, let’s connect today.