Patient and Caregiver Perspectives: How Pharma Can Improve the Chronic Condition Experience

Published November 30th, 2022 | 3 Minute Read

Patients and caregivers are the true experts in navigating the challenges that may come along with managing chronic, complex health conditions. While each patient and caregiver has a unique perspective based on their circumstances, hearing their individual stories can help the pharma industry uncover opportunities for improvement and create new paths forward. 

At Digital Pharma East in Philadelphia (Oct. 18-20, 2022), patient and caregiver perspectives were front and center in the Patient Solutions track keynote presented by two of Health Union’s 2022 Social Health Awards winners

Natalie Hayden, the 2022 Community Cultivator award winner, shares her perspective as a Crohn’s disease patient leader, former news anchor and founder of the Lights, Camera Crohn’s blog. Elle Cole, the 2022 Caregiving Champion award winner, is a sickle cell and type 1 diabetes health leader on behalf of one of her daughters who lives with both diseases and the founder of Cleverly Changing LLC. Together, with their unique perspectives and roles, Elle and Natalie discussed wins, challenges and opportunities to help pharma improve the chronic condition experience. 

Current Successes in Chronic Condition Management

To begin, Elle and Natalie both shared what’s currently going well in their health journeys, which included patient savings programs, nurse ambassador programs and biologic coordinators. For Natalie – who has been on the same biologic for 14 years – the follow-up calls from her biologic coordinator are no longer necessary; but the empathy and compassion that comes along with those check-ins is so appreciated, and can often be lacking elsewhere. Elle, too, has had a positive experience with a nurse coordinator early on in her daughter’s health journey; yet, when her family’s insurance changed, she lost access to the program. 

A memorable experience for Elle was when her daughter was first diagnosed with type 1 diabetes. While in the hospital, she received a “Bag of Hope” which included a teddy bear named Rufus to demonstrate insulin injection sites and a form to sign up for a support program, among other things. When Elle and her family returned home from the hospital, she received a call from a fellow parent who shared how he and his wife coordinate and care for their daughter with type 1 diabetes – which reassured Elle that she and her husband were going to be able to handle everything to come. In contrast, when Elle’s daughter was diagnosed with sickle cell disease, all she received was a letter in the mail, which demonstrates how vastly different the diagnosis experience can be. 

Challenges Faced in Condition Management

Earlier this year, Natalie was blindsided when she received an email from her insurance company stating that her approval had been denied despite the fact that she had been on the same biologic for 14 years. As a person in deep remission, this was extremely worrisome due to the time sensitive nature of her medication which, if missed, could cause her to fall into a flare and/or hospitalization. 

After more than 10 hours on the phone with her insurance company, specialty pharmacy and gastroenterologist, Natalie was able to resolve the issue. But when a patient receives an email that says “your insurance claim has been denied” in bold red letters and no one explains what happened, it puts the onus on the patient rather than who may have really been at fault. 

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Similarly, Elle also has experience with spending extensive time and energy coordinating her daughter’s care. When it came time to refill her daughter’s type 1 diabetes medications every three months, Elle initally had to contact four different pharmacies as all of the medications and equipment came from different places. On top of the time spent every three months, Elle was spending thousands of dollars, which just wasn’t sustainable. 

Once she decided to figure out if there was a better way, it took Elle four phone calls and numerous hours to learn that her daughter was eligible for a “diabetic bundle” – which essentially meant if she ordered the medications in a specific order from the same pharmacy on the same day she’d only have one copay. Elle then had to explain the “diabetic bundle” to the pharmacist and connect the insurance company with the pharmacist on a three way call to ensure her daughter received her medication. It was a relief for Elle to learn of this solution, but it took a lot of time and self-investigation to get there. 

Making Improvements to the Chronic Condition Experience

From Natalie’s perspective, there’s an adversarial feeling  – us vs. them – with patients and pharma; but it doesn’t have to be that way. Many patient leaders, like Natalie and Elle, are interested in partnering with pharma companies and being given the opportunity to use their voice. She stressed that patients want to be asked what resonates with them for advertising, and feel empowered when they see real patients – rather than actors – in marketing materials, on websites or on pharma social media. Elle notes that in the sickle cell space, this is being done really well; whenever she sees sickle cell ads, she recognizes familiar faces of other patients, some of whom she has met. 

Natalie also noted that there are opportunities for pharma to better collaborate with HCPs on how to best communicate with patients. As an example, if Natalie accidentally misfires her biologic injection, as a veteran patient, she knows how to handle the situation. But someone who is newly diagnosed in this situation might be sent into complete panic thinking they’ve lost their meds, lost thousands of dollars and may potentially go into a flare. They might be completely unaware of what steps to take, which could be remedied with better communication. 

As patient leaders in their respective spaces, Elle and Natalie are regularly asked what to do in these panic situations; there are so many things patients deal with on the back end that may not be top of mind for pharma companies. Per Natalie, “companies need to come to the patients’ side and hold their hands rather than standing in front of them to try to lead the way. Let us walk with you.” 

The right technology can make a world of difference when you have a chronic illness – or two – on top of your regular busy life. Elle shared that one of her challenges as a caregiver is remembering to give her daughter her medication. One of her daughter’s medications came with a device that went on top of the bottle and would show if the medication was taken or if it was missed. This worked well for Elle as a caregiver, but patients and caregivers need to be trained on how to use these tools; having the tools alone doesn’t necessarily make a difference. 

In addition, if patients, pharmacies, healthcare providers, etc. don’t know these technologies or training programs exist, ultimately they aren’t helpful. The communication needs to come from every level – from patient to caregiver to healthcare provider to pharmacist. The more widely spread the information, the more helpful it will be. 

Key Takeaways:

    • It’s imperative to have the patient voice incorporated every step of the way, and social health makes this possible and easy to execute. 
    • Collaboration is key. Patient leaders want to have a seat at the table, and want to be on the same team as pharma. 
    • There’s room for improvement in communication from pharma companies. Many patients and caregivers don’t know they have options and aren’t aware of how to partner with their doctors to figure out the best solutions for themselves or their loved ones. 

Elle Cole and Natalie Hayden are just two impressive health leaders who represent the wide range of influential individuals Health Union can connect you with through our extensive Social Health Network. To learn how your brand can plug into the power of social health – from scalable online health communities and social extensions to comprehensive quantitative condition-specific data and more – visit our Business Solutions page. 

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