An opinion editorial by Jorge (JD) Faccinetti, co-founder – The popularity of pituitary patient videos telling their stories is evident when you scan the web. Many patients speak about their experiences, positive and negative, with their respective diseases. We have done our share of highlighting people’s fascinating journeys and always try to find a compelling story that transcends the disease and focuses on the person, their lives, aspirations, and inspirations. For us, the interesting story is the person with the disease, not the disease itself.
The number of advocacy organizations, industry, and other players making these well-produced and likely expensive videos got me thinking about their effectiveness. To be clear, we should not stop making patient videos. It is always the me-too strategy and the “let me see if I can outdo the other guy” competitive attitude that gets my attention. Suddenly, everyone in the pituitary, adrenal, and endocrine space is making patient videos. These are all very good, and the stories are compelling. But they are repetitive, often very similar and unimaginative. I often wonder who’s watching them other than the people who produced them, those who are in them, and their friends and families.
Clear objectives are vital to successful outcomes.
Ultimately, their impact and ability to break through depends mainly on objectives. What do you want to accomplish? What outcomes are you hoping to achieve? Who are you talking to? And even more critical, what do you want them to do with the information in that message; what is called a “call to action “in the communications world. So, let’s talk about objectives and outcomes:
- If the objective is to increase awareness of the disease, then you must ask yourself: is anyone interested in listening to someone talk about a rare disease they don’t have or relate to and does not affect them or their friends and families directly? It is fair to say that the answer to that is a resounding NO, even if the person in the video is famous. I dare you to tell me right now (no Googling) what disease, if any, Julia Roberts, Justin Bieber, or Lady Gaga have. Does anyone remember the name of the disease that affected Robin Williams? If you don’t have it, you don’t care, and you definitely won’t remember.
- If the objective is to give people a voice and to share their experiences and struggles with the disease so other patients can learn how to cope better, find help, or join a patient group, the answer is a big YES. Still, you need a decent-quality production to tell that story. I would argue that a moderately well-produced video with good visuals and sound that doesn’t put you to sleep will get more attention. No Doubt! However, the ability of these videos to bring broader awareness to a specific disease is, at best, doubtful.
- If you are a manufacturer and aim to position a product or drug or create a favorable impression of a company, then a patient video makes sense. Now, you have a bunch of people talking positively about their experience with a drug, a therapy, or a support or access program that helps them manage their condition more effectively. Again, this does NOT repeat, NOT generate awareness of the disease. The people interested in that information already deal with the disease and their doctors.
Pituitary World News’s reason for producing videos with patients is to inform and educate. When patients know more about their condition, they can manage it better, work with their healthcare teams more effectively, and stay ahead of trends. Most organizations producing these videos align with these objectives and their limitations. Occasionally, a patient’s story may be compelling enough to break the interest barrier. Those are few and far between; typically, they need the necessary exposure to make a difference and move the needle. FREQUENCY, POSITION, AND REPETITION OF THESE COMPELING MESSAGES ARE KEY TO ACHIEVE DECENT RECALL. Recall (remembering something) is related to interest. No interest, no recall, and without recall, you’ve got zilch, zip, zero, nada.
A tough challenge.
What, then, does it take to generate awareness from a broader audience? What is it about a pituitary disease that would make someone pay more attention? There are three things to think about here: what makes people tick, the words and concepts that resonate, and a keen understanding of how the audience decodes (perceives) your message, what we call the takeaways. You need to create interest. In marketing and communication parlance, YOU NEED A BRAND, and with that brand, you need a strategic communications plan to tell the world about it. A strategy that lays out a road map to direct the message and how each stakeholder participates to get that message out to the world. A truly collaborative approach is like a symphony orchestra where every instrument has a part and creates beautiful music in concert with other musicians. And that, my friends, is an expensive proposition in time and money that will likely be immensely more successful and easier to accomplish if we work better together.
A way to create interest is to focus on things people relate to. This is more complicated than the simplistic way in which I choose to explain it. Think of it as concentrating on the things (appeals) that people are familiar with and relate to that are connected directly or indirectly in some way to pituitary disease. That strategy may allow us to indirectly introduce and educate about a disease to an audience that has never heard of it. In other words, now that I have your attention, what am I going to do with it? Stay tuned for more on this.
What should we do as a community?
A key challenge for pituitary stakeholders, and why collaboration is essential, is that many organizations, in their pursuit of relevance, often duplicate work that established institutions have already undertaken. For example, infographics on acromegaly or Cushing’s symptoms are frequently re-created at significant cost despite similar trusted, vetted, scientifically sound resources already being widely available. Although well-intentioned, such efforts sometimes overlook their impact on other stakeholders. For instance, when an organization that aims to empower patient advocates also produces content directly for patients, it can inadvertently diminish the influence of those advocates by duplicating their efforts. Well-run advocacy groups do a fantastic job of understanding what their communities need. They don’t need umbrella organizations outside their sphere of influence telling them what to do. These “me-too” initiatives take resources that could be directed toward supporting patient advocates, particularly in regions with limited access to resources and therapies. Additionally, instead of broadcasting information globally from a central hub, resources could be better used to equip local advocates with knowledge and tools tailored to their communities. Consider how McDonald’s local managers adjust marketing to fit their markets, rather than the New York corporate office dictating a one-size-fits-all approach globally.
A collaboration Summit.
Pituitary World News is championing several initiatives, including a Collaboration Summit, where stakeholders worldwide will share their insights, needs, and best practices to develop a roadmap for more effective collaborative programs. We’re excited about the potential for true collaboration and coordinated efforts that can make a meaningful impact. More robust brand awareness programs will be a game changer. Stay tuned for more details and dates for this meeting.
A final thought.
Raising awareness is a formidable task, and achieving meaningful outcomes requires unity. We can make a significant difference by understanding each stakeholder’s role and collaborating on initiatives that broaden the reach to previously unaware audiences. Awareness is vital to the early recognition and diagnosis of pituitary and adrenal diseases.
I invite you to comment on any of my opinions. After all, they are just that, opinions that come from doing this type of work for over 40 years. Let’s just say you learn a few things after all that time.
Image by Gerd Altmann from Pixabay
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