You will never recognize them by sight or outward appearances. They come in all shapes, sizes, genders, ethnicities, and ages. Spotting them in a crowd is also challenging, as they are typically more comfortable on the periphery of activities, preferring to speak “only when spoken to” or when something is worth sharing.
They are equal parts loving partner, master planner, keeper of schedules, proactive listener, quick study on all things medical, thorn in the side of the biopharmaceutical industry, sometimes loudest voice in the room, and madly in love with the person they support. Which, above all else, is why they are comfortable in this role, the role of a caregiver. When asked why an individual becomes a caregiver to a spouse, child, partner or loved one, they will tell you simply; “it wasn’t my choice, but it starts with love.”
Every caregiver is born in a different way. When I was thrust into a caregiver role nearly 15 years ago, I was your typical “babe” in the woods. Nobody expects to get sick until they do. For caregivers, this sentiment is exactly the same. The role and its inherent demands are never part of a person’s thinking. As in, “well, when I become a caregiver I will know exactly what to do because I have been preparing for it all my life.” One day you’re not a caregiver and the next day you are. More importantly, you're often a caregiver to those who are most important to you. In my case, I was a caregiver for my wife, on whose face the sun rises and falls. Perhaps more frighteningly, I was a caregiver facing tasks I had no experience with.
This is particularly true when someone like myself accompanies my care partner to a physician appointment, or a meeting with a team to discuss potential involvement in a clinical trial. While doctors meet with patients on a regular basis, it becomes quite clear during initial engagements that pharma and the supporting healthcare ecosystem have minimal exposure to caregivers. To their credit, the industry has done yeoman's work during the last decade in ensuring that patients are at the heart of any drug development and/or clinical process. However, missing in this equation – and I really mean totally absent – is the lack of consideration to or involvement with caregivers. If it is a patient perspective in which these professionals are interested, they would do well to look at the other person in the room and tap into this huge reservoir of information. Real-world data that’s gathered within close proximity of the person for whom they care, and includes medical, personal, and all-important anecdotal information. Information that can be used when developing drugs, trial protocols, clinical wearables, marketing campaigns and the like.
Caregivers and biopharma share the same goal. The optimum health and improved outcomes of the patient. And yet, there is little evidence that they ever talk to one another. Furthermore, when information is presented, usually by the biopharma professional, it comes from a lofty peak of complex medical data and rarely understood by the non-scientist caregiver. When I am immersed in this type of conversation I usually quote a line from one of my favorite movies, Margin Call, whose main character says; “Explain it to me as you would to a small child or Golden Retriever.”
So, what’s the main takeaway here? It’s simple. Caregivers are interested in partnering with medical professionals across the continuum. They also recognize that the information they have to share with biopharma researchers may just be the missing secret weapon from R&D arsenals. Imagine incorporating data on how medicines are used, and their effectiveness (or lack thereof) during all phases of drug development and approval. But that's not all, we also provide value with trial recruitment, patient engagement and retention, and any number of ancillary pieces of data that will help improve the patient journey.
How do you gain access to all of this?
Well, all they need to do is ask.