Seeing the Care Journey Through the Patient’s Eyes
At PatientPoint, we’re always looking for ways to take our approach to messaging patients to the next level. Having heard professional patient advocate Dr. Grace Cordovano speak at several conferences, I knew she could give us valuable insights from inside the care experience.
Grace is an award-winning, board-certified patient advocate (BCPA) who specializes in fostering private, personalized patient advocacy services in the cancer arena. She gained a unique view of the patient journey by working intimately with dozens of cancer patients – including her mother – and by going through the journey herself when she was misdiagnosed with advanced lymphoma. As a result, Grace sees opportunities for brands to improve the care experience for these patients.
Q: You’ve helped many patients through their care journey. What does it take for a patient to complete that journey successfully?
A: Many things are required to be successful as a person living with a diagnosis, and some of them are not clinical. We have to be mindful of things like social determinants of health. When patients go home, do they have food in the refrigerator, transportation, and someone who can help them care for themselves?
And what about coordinating care? That’s a big unmet need people face routinely. People with a chronic, life-altering condition are often distressed and disappointed by how little is done to make sure all information is communicated seamlessly to every essential care person and caregiver.
Q: How can healthcare marketers help in that regard?
A: I would love to see brands provide a tool to guide patients. When someone’s given a life-altering diagnosis, they aren’t given a map or basic list of steps to tell them that when they get home, they need to do A, B, and C. What do I do when I leave that point of care? What do I do when I go home and I have work, family, children, and so many other obligations that don’t stop because I have this diagnosis? Lay it out for me: tell me what I need to do next and what do I do if I get stuck.
Q: What would a guide like that include?
A: Ideally, it would be a digital tool, so when a person leaves the doctor’s office, they have an app that maps exactly what they need to do for next steps. Having a to-do list is not enough because the path is never straight-forward. We need significantly more than just scheduling the next appointment or establishing medication reminders. People need to know how to request their medical records, how to navigate an insurance denial, or what to do when the medication is not covered by their pharmacy. This could be easily crowdsourced, similar to how Waze crowdsources traffic and navigation. Let’s crowdsource and navigate our diagnoses together!
Q: What is a patient story that’s really stuck with you?
A: I collaborated with a woman whose blood work indicated she might have a rare cancer. She met with a surgical oncologist who recommended a Whipple procedure, a surgery that could seriously impact her quality of life. The oncologist shared his medical expertise and his concerns, the patient and I did extensive research and, after months of work, we decided to go ahead with the procedure. Two days before the surgery, the oncologist called the patient and said, “You know, I think you should seek a third opinion.” Everyone relaxed, the patient got another opinion, the surgery was put off and she is now asymptomatic with no signs of any cancer. She’s doing great today because her oncologist was thoughtful and humble enough to get another perspective. The process was a beautiful example of shared decision-making between the patient and the doctor.