I never used to pay attention to anything in the healthcare industry. As someone young and healthy with no medical conditions, I rarely went to the doctor and ignored drug commercials. That all changed when I met my husband. After we had been dating for a while, he let me know that he had been diagnosed with Ulcerative Colitis (commonly referred to as UC) when he was 20 years old, and it was not well controlled. My mindset quickly shifted, and I took on the role of a caregiver to someone with a chronic illness. Suddenly everything about the pharma industry fascinated me. I quickly went to find all the information I could on the internet, but it turns out there aren’t a ton of resources available to caregivers for this non-life threatening illness. It was frustrating, to say the least. The lack of resources directed toward caregivers of people with UC seemed to delegitimize their role as caregivers, like they are not even a part of medical decisions.
Luckily for my husband and me, my new-found fascination with the world of pharmaceuticals led me to Market Strategies, where all of my healthcare market research colleagues had seemingly endless knowledge about how to find deep information on diseases and current treatments, as well as treatments in development. I did some independent research on UC and discovered there were better options for my husband than what he was currently prescribed. With my encouragement, he found a more open-minded doctor who prescribed a new medication I had suggested. This new medication was a self-injectable. My husband is brave in a lot of ways, but shots are not his favorite thing. For this new medication to work, I would have to administer the shots. I went with him for his initial loading dose at the doctor’s. My presence at the medical office was viewed as normal, it seems a lot of patients are accompanied by caregivers. The nurse showed me how to inject the medicine and gave us some material from the drug manufacturer.
However, once we got home, it was clear that the manufacturer did not consider the possibility that someone other than the patient would be reading the materials or administering the injection. They did not acknowledge the role of a caregiver at all, which made me feel a little strange as I’m a big influence when it comes to my husband’s medical care. Even after reading the patient-facing materials, I still feel a little bit nervous when I give him his shot, even a year later. That part may come as a surprise to my husband, as I get the feeling he’s pretty confident in my ability. He has to be.
Pharma Companies Are Overlooking Caregivers
Pharma companies often focus on two research audiences in their communications research—HCPs and patients. Both are very important audiences when it comes to making the decision of what medication(s) a patient should take. But caregivers often play an important role which may be overlooked in cases that are not life-threatening or completely debilitating.
In a recent study conducted by Market Strategies among patients and caregivers across a variety of illnesses, we found that about half of the patients with a caregiver—and caregivers themselves—agree that caregivers have a great deal of influence when it comes to making medical decisions. Anecdotally, had I not done the research and suggested a certain drug to my husband, he would not currently be taking it. Most people aren’t as fortunate as me to work in an industry that offers the tools to know where to look for information. Understanding this dynamic has implications for pharma companies that target communications to caregivers and, more importantly, for those that do not but should.
Caregivers May Lack Confidence
While most patients and caregivers agree that caregivers have influence when it comes to making medical decisions, patients are much more confident in their caregivers than caregivers are in themselves. Seventy-two percent of patients say they are confident in their caregiver’s ability to help them make informed decisions about their treatment, but only 54% of caregivers say the same. This begs the question—why?
Caregivers Need Information to Make Decisions
We also asked how caregivers felt about the amount of information that’s available specifically for them. Encouragingly, most felt there was an appropriate amount of information (a few even said too much). However, the caregivers who felt there was not enough information were far less confident in their ability to care for their loved one. More materials geared towards caregivers could help them feel better-equipped, which is important given how much influence caregivers can have. It’s even more important to provide the right kinds of materials. Considering that some caregivers felt there was ‘too much’ information, striking the right balance between overwhelming or irrelevant and informative is essential. The right kind of information might even get someone to convince a loved one to try a new medication.
Market Strategies interviewed a national sample of 1,014 consumers aged 18 or older between April 11 and April 13, 2017. Respondents were recruited from the E-rewards opt-in online panel of US adults and were interviewed online. The data were weighted by age, gender, and census region to match the demographics of the US population. Due to its opt-in nature, this online panel (like most others) does not yield a random probability sample of the target population. As such, it is not possible to compute a margin of error or to statistically quantify the accuracy of projections. Market Strategies will supply the exact wording of any survey question upon request.