If you work in the life science sector, developing a comprehensive patient advocacy group (PAG) landscape is essential at various stages of the drug development process, particularly when:

1. Planning your next trial or observational study

2. Entering a new disease area

3. Launching a new product 

With over 20,000 patient advocacy groups worldwide, mapping out all the key stakeholders to develop a productive engagement strategy can seem daunting. Don’t worry we got you covered! 

Our team has produced over 80 PAG landscapes and translated our learnings in this step-by-step guide to help you avoid the same mistakes we made 😅

Step 1: Defining Your Regional & Disease Scope

Before you start googling, let’s give your search some direction to save you time and effort. First, define any regional limitations. Are you looking for PAGs based or active in specific countries or near certain research sites? Additionally, you'll want to identify all the key terms associated with your indication, especially if you're looking for PAGs in a rare condition where the volume might be low. This includes different spellings of your indication, common acronyms, and other associated or broader condition categories. Hunter Syndrome, for instance, can also be referred to as Mucopolysaccharidosis II or MPS II and should be considered in your search. 

Step 2: Where are the PAGs Hiding?  Uncovering the whole universe!

To do a proper landscape analysis, it’s important not to leave any PAGs behind. Identifying all potential partners can be challenging and just googling “Patient advocacy group in X disease” may not be comprehensive. Here are other sources to search for PAGs: 

1. Non-Profit Online Directories focused on specific diseases such as Orphanet, or more generic ones like Guide Star (US specific, but similar databases exist in other countries) are great places to begin.

2. Members of Umbrella Patient Organizations often provide a list of their PAG members, which you can sometimes narrow down by region. 

3. Social Media is another valuable tool; small or online patient communities can often be found on platforms like Facebook, Instagram, and TikTok. Looking through followers or mentions of a PAG on social media can help you discover other groups that your original search didn’t surface. 

4. Digital Activity can offer another approach if you're coming up short, especially in rare diseases. There might be other groups sharing content or providing services related to your disease of interest, even if it’s not their primary focus.

Step 3: How to Qualify Your List? Getting Rid of the Imposters! 

Now that you (hopefully) have a good list of potential PAGs to consider, it’s time to evaluate if they are truly qualified. We’ve developed a process of elimination to help weed out the imposters from your analysis.

1. Non-Profit Status (or at least not a disguised for-profit organization): The group should be a non-profit entity representing patients with a specific disease, disability, or symptom.

   

2. Membership Composition: The members should be patients, family members, care partners, or other PAGs.

   

3. Active Digital Presence: Look for an active digital presence on their website or social media.

   

4. Financial Control: The group should have full control over their fund allocation (unless they are affiliated with an umbrella organization).

   

Step 4: Evaluating Strengths 

With a shortlist of qualified PAGs, the next step is to compare their strengths. Here are six important dimensions to consider in your evaluation: 

1. Patient Reach: Assess the volume of patients the group can reach and how closely they are connected to the patient community.

2. Communication Channels: Evaluate the number of different channels they can use to reach patients.

3. Experience & Priorities: Consider how much focus they have placed on your disease and area of interest (i.e. policy, research, education, etc).

4. Capacity: Determine how much time and resources they can realistically commit.

5. Diversity, Equity & Inclusion: Look at their level of involvement and affiliation with patients sharing a common ethnicity, demographic, religion, sexual preference or other diverse traits.

6. Openness to Industry: Assess their engagement (if any) and level of collaboration with the life-science industry.

Step 5: Future Proofing Your PAG Landscape

Congratulations! You've developed a comprehensive PAG landscape. It is now time to select the right partners and decide on your engagement plan.  But how do you ensure that your landscape remains relevant and effective as time goes on? Unless you have unlimited time and headcount, this is a problem that only technology can solve. Luckily for you that technology now exists with Zebricks.

Zebricks is a cutting-edge platform that automates PAG landscaping using the most up-to-date and real-time information, saving hours of desk research and ensuring your research efforts are future-proofed. 

Conclusion

Knowing how to identify, qualify, and uncover the nuances of the PAG landscape are foundational skills for building a successful patient engagement strategy. By following this step-by-step guide, you're well on your way to becoming a PAG landscape expert. Invest in future-proofing your landscape to ensure your efforts remain effective and adaptable as the landscape evolves. Happy mapping! 🚀

Written by Anne-Marie Bisson