4 Patient-First Pieces of Wisdom for Rare Disease

Recently, as OptimeCare reached another year in business, I was able to reflect on the biggest lessons I’ve learned as a business owner. Then I began to think more about how I continue to learn, day in and day out, as a business owner. Who influences my thinking most and helps me to find my focus? Who helps me to solve problems for our patients and in our business?

Like many, it’s the people we surround ourselves with – the mentors, our family, and for me it’s my team here at Optime Care. Yes, they are all experts in their fields, but the driving force that links each and every one of our team members is the need to provide patient-first care.

It’s with a patient-first focus that we help each other to problem solve and care for our patients every day. Four of our team members sat down with me to share their perspectives on what is next on the horizon for our podcast Rare Voices.

You can listen to the full episode here.

The Power of Specificity

Hannah Morgan, team pharmacist: Being able to be focused on a specific disease state allows me to do what I love to do: form connections with patients and improve their quality of life. In the world of pharmacy, my first taste of this was at a specialty mom-and-pop pharmacy, where, yes I was filling prescriptions for a medical need, but also I was getting to know patients and was able to cultivate a community of caring where we support each other. That’s especially important in the rare disease field where things are a lot harder. You can’t just run out and pick up a prescription down the street at any time. Often, patients have been dealing with symptoms for who knows how long and have gone to many doctors, gone through tests and diagnostic screenings for years. Finally, when they come to us, they know they have a dedicated professional team for support and to hold their hand. What people want in the end is to feel cared for and feel supported.

Challenge: Create meaningful, personal support systems and relationships. When you create specific teams, dedicated to specific groups of patients, your team becomes the expert support system for patients and doctors. Then take the next step. Provide a specific team member as a?point of care for your patient to know. It’s how to create the best patient-first care. You’ll know the difference and your patients will feel the difference.

Patient First as a Way of Life

Jessy Broughton, care director: Patient care isn’t just something we do. It is everything that goes into it being patient first. It’s not a job description. It’s a way of life. If a patient needs to get medication, no matter the stumbling blocks or if it’s not in our job description, department or area of expertise, we make sure it happens. We cross the bridges and red tape. The insurance, dispensing or shipping issues, we get the patient the medicine. We think: What’s the obstacle and how do we overcome it? We work with other team members. We call the freight carrier. We make sure, no matter what, patients get what they need.

Challenge: When the answer is ‘no’ in patient care, find a way to make it a yes. When you’re patients are relying on you (and in the world of rare disease, they are), realize that you’re the?end of the line for them and you have to work together with your team members to work around challenges and put patients first.

How Consistency Pays Dividends

Brandon Salke, pharmacist in charge and general manager: Be the constant for your patients. Over the past year and a half, as doctors offices were shutting down and patients weren’t being seen. Or as patients had to isolate from family and friends because of the pandemic, we were there to talk to them. And our patients felt comfortable doing that because our team works so hard at fostering relationships.

Challenge: No matter what, care organizations need to be there for patients. Yes, even during a pandemic. Especially during a pandemic. We say it time and time again. At Optime Care, no matter what patients are going through, no matter where they are or the life changes they’re?encountering, our priority is to be a place to call home for our patients. Look at all patients as people at all times. Help them through life’s inevitable changes by being a constant.

Be Inspired By Your Patients

Stephanie Wasilewski, VP and care director: I am honestly surprised at how pleasant our patients are, even while they are suffering from HAE, a disease that can impact them with swelling in any parts of their body at any time. It’s a difficult and scary thing to be dealing with. Despite this, they are always very pleasant and always will to share their stories. I would be angry. I would be scared. But they are excited to talk to us. They are excited to share their diagnosis story. They are excited to tell us the medication is working and they haven’t had a swell in months. Or the flip side happens, the therapy isn’t working as well as they’d hope. But they say I’m thankful you’re there for us. And they say they are going to tell their family members about us because maybe we’ll be able to help them.

Challenge: The challenge here should be obvious. If you’re patients are going through possibly one of the toughest, scariest, most draining times of their lives and they are ready and willing to open up to you, they deserve to be heard. So take the time. Take the time to listen. Take the time to improve your patient care. Put your patients first.