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RAPS' Latest | 28 July 2016 | By Zachary Brousseau
At the start of a recent phone conversation with patient advocate and 2016 Regulatory Convergence closing keynote speaker, Lori Hartwell, she paused for a moment to warn that if there is any audible squawking in the background, it’s just her pet parrot, Johnny. Hartwell, an animal lover, has four dogs and a cat in addition to Johnny, but they are more than just pets. They are an important part of her philosophy on living happily with chronic illness.
Hartwell is a four-time kidney transplant recipient, a patient advocate, founder of the Renal Support Network (RSN) and author of the book, Chronically Happy—Joyful Living in Spite of Chronic Illness. Talking with her, she exudes positivity that is authentic and infectious without being naïve or unrealistic in the least. In fact, it is the opposite. Her outlook is the result of a lifetime of overcoming challenges and finding hope in the midst of some daunting circumstances. You can’t help but be inspired not just by her story, but by her optimistic way of looking at the world.
Hartwell has grown up with kidney disease since the age of two, when her kidneys stopped functioning and doctors put her on dialysis, not expecting her to live. But she defied the odds. She was on dialysis for nearly 13 years, and in the years since her initial diagnosis, has undergone more than 40 surgeries, including four kidney transplants, the last of which was in 2011.
She understands firsthand the importance of having hope. “I think that when you have a chronic illness, it’s extremely important to have something to look forward to. When you don’t, it’s easy to fall into depression,” said Hartwell. It isn’t always easy for patients living with chronic conditions to stay positive. She believes hope is something you have to work at. “I had to develop my interests and discover what makes me chronically happy,” she remarked. “For me, it’s animals, making jewelry, certain music,” but it’s highly personal and different for everyone.
In the larger sense, this idea is universal. Everyone gets discouraged at one time or another, but the stakes are higher for chronically ill patients, because falling into depression may cause them to fail to show up for doctors’ appointments or not take their medication, which can have devastating effects.
Even as a young kidney patient, doctors and healthcare professionals recognized in Hartwell a determination and the potential to make an impact. She received encouragement from adults but didn’t have many opportunities to meet other kids like her. When she did, it made an impression. “I remember meeting this girl who had a similar story. She was a few years older and she was cool,” said Hartwell. “She helped me a lot, we became friends, and I had someone who understood.”
Years later, after Hartwell had had a successful kidney transplant in her 20s and was finally off dialysis after more than a decade on, she found herself with a deep desire to help other kidney patients connect and provide mutual support and “to have the opportunity to share their experiences, strengths, and hopes with one another,” she wrote in a letter about the founding of RSN. “After all, one friend can make the difference!”
“I wanted to create an organization that every fiber of it had a message of hope,” said Hartwell. She founded RSN in 1993 as a patient-led grassroots organization serving Southern California, but it has grown into a national organization helping patients across the US.
Hartwell emphasized the need for people in healthcare, including regulatory professionals, to understand patients. “Everybody is a patient in some capacity,” she said, so it’s important to be able to look at things from the patient’s perspective. “They need to understand the emotions of an illness are really severe.”
While most regulatory professionals do not have direct contact with patients, they need to understand multiple aspects of the products they work with, which may include factors that relate to the patients’ experience—like potential side effects or patient adherence. “Really think about how the product or medication will make them feel on a daily basis, not just the outcome or endpoints,” she said.
Most patients don’t understand regulations, acknowledges Hartwell, and not every patient is going to be involved in advocacy, and that’s OK. The question for regulators and healthcare product companies is: How do you create a group of patient leaders who can engage and be involved?
“In the patient advocacy world, you need to be knowledgeable before you can be engaged,” she said, which is why it’s critical to identify and encourage those patients who have the desire, ability and critical thinking skills to be true partners. “You have to grow patient advocacy. You have to foster and nurture it,” advised Hartwell.
There are other factors that can be barriers to their participation, as well. “You have to learn a new language including acronyms and slang that you may not be comfortable with,” she said. Helping patients understand can go a long way toward engaging them.
One of the lessons Hartwell has learned as a patient advocate working with regulators and clinicians is the importance of forging personal connections with those she works with. “We need to see each other as human beings trying to solve a problem,” she said.
She points out how critical it is to be invested in developing new therapies for patients. “That’s when the incredible inventions happen. That emotional connection helps drive creativity. You need that fire in your belly to make a difference,” said Hartwell. “Passionate people save lives.”
Lori Hartwell’s passion is clear, and she has made a difference in countless lives.
You can see Lori Hartwell’s closing keynote presentation, 20 September, at RAPS’ Regulatory Convergence in San Jose, CA. For more information or to register, visit RAPS.org/Convergence.
Tags: Regulatory Convergence, keynote, Lori Hartwell, #2016RAPS, patient advocacy