• by Neil Weisman , September 17, 2013

If you work on behalf of a pharmaceutical product, chances are your company has a relationship with a patient advocacy group (PAG) dedicated to the disease that product treats. Beyond your company’s financial commitment, what does that relationship look like? How much do you know about the PAG, their members, and their mission? How much do they know about your company’s goals? Do they trust you or are you perceived as another pharmaceutical company that is just ‘in it for the money?’

PAGs are an ideal place to engage patients. They provide credible disease information and offer a sense of community, whether virtual or face-to-face. One of the best ways to activate relationships with PAGs is to create unique content that elevates your connection with members. By providing something of value, you are servicing the PAG’s mission and enhancing your credibility.

A trusting and mutually beneficial relationship with PAGs and communities can lead to:

• A sustainable collaboration that has long-term benefits for current and future marketing initiatives
• Increased disease awareness amongst patients, caregivers, and physicians
• Sponsored content that will be welcomed and shared by community members and their family, friends, and loved ones
• Patient perspectives incorporated into your marketing plan

Step-by-step process

We collaborate with PAGs to accelerate drug development. Their efforts have been particularly successful with rare or underserved diseases, or where there’s an active community base.

While strategy and tactics vary by project, timelines and disease, here are some best practices to build productive PAG relationships:

• Evaluate the pharmaceutical company’s current PAG relationships (if any already exist)
• What current tactics are being employed? What is their success? What’s been done in the past?

• Assess PAG initiatives
• Evaluate efficiency and effectiveness of communications vehicles available through PAGs to distribute messaging (events, local chapters, website, walks, emails, magazines, social platforms, etc.)

• Conduct Patient Assessment

• What do you know about the members? How does the community feel about the PAG’s content and activities offered? Where do communications gaps exist?

• Set mutually beneficial goals: If the relationship is a win-win for both parties, both will be invested in its success.
• You want to access the PAG patient base, but to what end? 
• While financial resources are usually a need for a PAG, there are usually other priorities, such as generating content or expanding membership

• Develop strategic and tactical plan
• Integrate initiatives with the current marketing plan
• Create content and work closely with PAG and pharmaceutical representatives through execution
• Demonstrate that pharmaceutical company is authentic, honest and cares about supporting community while advancing research

• Evaluate and optimize campaign strategy/tactics

Below are two examples of how pharmaceutical companies have successfully partnered with PAGs to accelerate enrollment in clinical trials.

Creating a New Kind of Content

We recently produced a documentary style film that highlights the challenges of living with lupus and the importance of clinical research. This unique film featured a lupus patient and was presented in a style that was a step above typical clinical trials communication. 

The film is posted on the study website and will be incorporated into other study and PAG communications vehicles, including national walks, local support group outreach, patient education events, as well as traditional and social media.  This initiative has kick started a whole new level of interest in the small lupus community that often feels isolated and with few treatment options available to them.

Thinking outside the box

In addition to PAGs focusing directly on the condition, there are often other networks to access your target if you think outside the box to identify them.

While recruiting for an obesity clinical trial, we developed a relationship with an association that served as a health and wellness authority for the trucking industry. 

There were discussions at the federal level about requiring truckers to meet BMI requirements to maintain their trucking license, and this association wanted to develop an initiative to prepare their membership for these new expectations. The pharmaceutical company identified this initiative as an opportunity to improve the health of professional drivers and recruit study participants. They worked with the association at the annual Mid-America Trucking Show in Louisville to pre-register potential study participants. 

Developing a mutually beneficial relationship

If a pharmaceutical company’s commitment is sincere and engaged over the long term, PAGs and their members can become your advocates. With meaningful content to educate patients, connect them with treatment options and inspire them to support one another, you’ve certainly contributed to the key missions of patient advocacy. A win-win indeed.