A Guide for Building Trust and Expanding Reach by Partnering with Patient Advocacy Groups

A Guide for Building Trust and Expanding Reach by Partnering with Patient Advocacy Groups
02 Sep 2023

Patients in today’s digital world seek information. They want to be informed about their disease so that they can participate in the decisions that will ultimately affect their livelihood. 


Patient advocacy groups (PAGs) are an important resource for patients in this regard. Organized around the needs of a specific patient population, PAGs rely largely on volunteers to provide patients with support and services that improve patient lives. The American Cancer Society is a prominent example. Established over a century ago to raise public awareness about cancer, the American Cancer Society now funds groundbreaking cancer research, lobbies for patient-centered policy changes, and provides both emotional and educational support to cancer patients and their caregivers.  

Pharmaceutical and diagnostics companies can also offer substantial value to patients, not only by developing life-saving products, but by creating patient-facing, informational content surrounding their products and the diseases they address. The problem is maximizing the impact of this content. This is where PAGs can help. 

The Benefits of Partnering with Patient Advocacy Groups

“I urge industry to work as early on as possible with advocacy. The benefits are truly amazing,” said Louise Vetter, CEO of The Huntington’s Disease Society of America, in a Syneos Health Communications report

What are the benefits for healthcare marketers?

For one, PAGs can open a more direct line of communication between patients and healthcare companies. By equipping patients with information about their condition and the treatment options, healthcare companies can promote more informed discussions between patients and their doctors. This allows patients to exercise more control over their own treatment. 

PAGs can also engender patient trust in pharma and diagnostic companies by association. Patients trust PAGs to have their best interests in mind. The same cannot be said about healthcare companies because of their for-profit status. PAGs can improve patient trust in healthcare companies by helping to convey the latter’s depth of expertise and shared goals of improving patient lives. 

A more concrete way PAGs can help pharma companies is by helping to recruit patients for clinical trials. A notable example includes PD GENEration, a genetic study of Parkinson’s disease patients organized by The Parkinson’s Foundation and supported by Sanofi. The study expanded access to genetic testing for Parkinson’s disease patients while also providing participants with key information that could inform participants of clinical trial eligibility.

A Case Study in Partnering with Patient Advocacy Groups

How should healthcare marketers go about partnering with PAGs?

In consultation with the Myelodysplastic Syndromes (MDS) Foundation and the Cancer Support Community, Jazz Pharmaceuticals recently launched Find The Right Fit, an educational hub for patients with secondary acute myeloid leukemia (sAML). The patient-facing resource represents a great example of how a pharma company can work with PAGs to inform patients with valuable content. 

The launch comes at a time when many treatment options for various forms of sAML are available, including Jazz’s Vyxeos, Astellas' Xospata, Pfizer's Daurismo, Novartis' Rydapt and AbbVie and Roche's Venclexta. According to reporting by FiercePharma, Jazz Chairman and CEO Bruce Cozadd said that the number of available therapies, while ultimately good for patients, “also adds a little bit that confusion of 'how do I understand what’s right for me, what questions should I be asking and how do I get answers?'” Identifying these questions is an important first step in developing patient-facing content. Cognizant of the needs of their patient communities, PAGs can help clarify these questions. 

The next step is coming up with content that answers these questions. Start by putting together a directed, specific list of topics for articles that cluster around a broader topic. Take, for example, Find the Right Fit’s series of informational articles: 

  • The Science Behind Treating sAML

  • What to Know about Secondary AML

  • sAML Subtype Testing: What to Know

  • The Progression of MDS to AML

  • The Role of a Caregiver

These articles cluster around three broad topics: what sAML is, available testing and treatment options, and advice for patient families. In this case, both Jazz and the partnering PAGs contributed their expertise --- in the science and experience of sAML, respectively --- to create informational articles for patients. 

A third and final step is directing traffic to content. Closer to patient communities, PAGs can leverage various digital platforms to direct their communities to content. For Find the Right Fit, both parties leveraged PR efforts and social media to direct sAML patients to the site.  

Partnering with PAGs for content marketing does not need to be as involved as this example. Pharma and diagnostic companies can provide informational content for PAGs to endorse and share. The most important thing is PAG involvement during content creation. Don’t expect PAGs to endorse your content if you leave them out of the process. 

A Win-Win-Win for Patients, Advocacy Groups, and Pharma

When healthcare companies partner with PAGs, everyone wins. PAGs have much to gain from the extensive scientific knowledge and experience of healthcare companies, as this information is critical to helping patients understand their disease and how best to manage it. Collaborative content can also turn patients into advocates for themselves and others. On the other hand, healthcare companies can benefit from expanded reach to the communities fostered by PAGs. Patients are the ultimate winners when PAGs collaborate with industry. With more information at their disposal, they are capable of better understanding what they are going through and what to do about it. 

Industry leaders are recognizing the common ground they share with PAGs in serving patients. In an article by PharmaVoice, Bob Geho, CEO and co-founder of Diasome Pharmaceuticals, noted that “Engaging with advocacy groups adds value for all parties involved by increasing disease awareness.” Liz Lewis, Chief Counsel & Compliance Officer and Head of Patient Advocacy at Takeda Oncology, concurs in a PharmaFile article: “The interests of pharma companies and PAGs are aligned – at the core of their efforts are the patients and families themselves.”