Empowering Patients Can Make A Significant Impact on Healthcare

Empowering patients can have a meaningful impact on their healthcare, but this empowerment starts with the clinician, said Jen Horonjeff, PhD, Founder and CEO of Savvy Cooperative, during the ACR Convergence 2020 conference.

“Because of my care team, I didn’t feel so ashamed of my disease. I ended up embracing it and seeing it as an asset. I was able to affect change that not only helped me but helped others,” she said. “Clinicians have the power to make their patients feel empowered, not in spite of their disease, but because of it.”

“Truly the backbone of my entire personal story—as well as my career—has been my arthritis,” she said. “I’m here today to talk about the power you have to truly make an impact in the lives of people living with arthritis and other rheumatic diseases, even outside of the clinic.”

Arthritis Can Be Lonely

Dr Horonjeff said that she was diagnosed with juvenile idiopathic arthritis when she was 11 months old. Because treatments such as methotrexate were not approved for use in children with arthritis at that time, she was given nonsteroidal anti-inflammatory drugs and was told not to move.

“The education just wasn’t there back then in the same way it is now,” she said. “So, from doctors to teachers, people were making assumptions about me and what I could and couldn’t do relative to my peers.”

Dr Horonjeff explained that she was not able to play soccer with the children in her town. In addition, her sister became jealous of the attention she received from her parents, which led to an ongoing rivalry that defined their relationship.

“I felt unwanted by my sister, misunderstood by my peers, and dismissed by others altogether,” she said. “I didn’t meet another young person with arthritis until I was a teenager, and for that, I have my rheumatologist to thank.”

Small Details Can Have a Big Impact

Dr Horonjeff advised providers to have “cool stuff” in their offices for patients. She said she vividly remembers details that made her frequent visits to her physicians more enjoyable, including Snoopy bandages, a porcelain bird mobile, and plastic bugs she was able to choose from a jar at the end of her appointments.

“These were little things that probably no one expected would have impacted my care, but I have very fond memories of them,” she said.

The Importance of Family-Centered Care

Dr Horonjeff said when she was young, her pediatric rheumatologists tried to get her family to attend some of the first juvenile arthritis conferences and camps organized by the Arthritis Foundation around the time of her diagnosis in 1985.

“After I did get involved later on, I asked my mom why we weren’t involved in these things when I was a child. She very earnestly revealed to me that it was a different time back then, and she was scared. She didn’t want to see how her child was going to turn out,” she said.

Dr Horonjeff said that this never angered her because she knew it was part of her mother’s coping mechanism upon learning that her child was afflicted with an incurable disease. However, it points to the need for family-centered care. “It’s important to understand the unique perspectives, concerns, goals, and motivations that each person—patient or not—wishes to achieve,” she explained.

This goes hand-in-hand with the idea of shared decision-making, which is critical to effective care delivery. For example, in a clinical trial, if researchers don’t know what matters to patients early on in the process, they won’t know whether the treatment is actually addressing the problems that patients want solved.

“We need to start doing the work upfront, by understanding what matters to different types of patients,” she said. “The answer is not a one-size-fits-all approach.”

Understand the Patient Perspective

The first step in understanding a patient perspective is listening and learning what constitutes good treatment for each patient on a personal level. Dr Horonjeff said, for example, that she decided to switch from injections to infusions because this better fit her lifestyle. “It was a great way for me to prioritize the things that were important to me,” she said.

She encouraged providers to think about how they can have conversations with their patients to understand them as individuals. This may be done through strategies such as one-on-one interviews, focus groups, virtual connectivity, or other methods that encourage patient feedback.

Diversity Matters

Dr Horonjeff received her PhD in environmental medicine with a focus on patient-centered outcomes, and her work focused largely on arthritis, physical impairment, and disability. “So naturally, my patient life overlapped quite a lot with my professional life,” she said. “For the past decade or so, I think people have been starting to see the light and feel the pressure that they actually do need to engage patients, and it was at about this time that they started to ask me for my input as a patient, because I already had a seat at the table.”

As a rheumatology patient, she was constantly asked to weigh in on committees and projects, and although she initially felt flattered, she began to feel very uncomfortable.

“The last time I checked, there were 54 million Americans with arthritis,” she said. “So the perspective of a white woman with a PhD who lives in New York City is not representative of those 54 million Americans.”

Diversifying the patient perspective requires formalizing patient involvement. According to Dr Horonjeff, this means seeing patients as equals in terms of what they can bring to the table, making them co-investigators, and compensating them fairly.

“If I had to count the number of times I’ve had to justify why patients should be compensated, I would run out of appendages,” she said. “I know that this is an ongoing challenge, but they bring value. It just might be a different layer of perspective.”

Although providers may get too hung up finding the “perfect” way to engage patients, there is no perfect way. “I encourage people just to start somewhere, learn from it, then do it again and again,” she added. “Remember that patient engagement is not a noun; it’s a verb, so it should keep going. It’s dangerous to think that one person can speak on behalf of everybody.”

Realize the Value of Patients

“Equitably value patients,” Dr Horonjeff said. “Patients are just as valuable as the clinical researchers, the statisticians, or anyone else involved on a team, and we need to act that way.”

Although a tenured professor, a clinical researcher, or a physician may be able to sit on a committee for free, their participation is an expected and inherent aspect of their careers. Meanwhile, for a patient to participate, he or she may need to take time off work, pay for transportation, or arrange and pay for childcare. Their participation is not equitable, she said, adding that it is not only a money issue, but a diversity issue as well. If institutions do not start building budgets that allow for things such as patient travel stipends and compensation, the diverse sample of patients they are looking for may not be able to participate, she noted.

“I was able to participate in these types of committees because I could; it was a position of privilege,” she added. “I think if we don’t acknowledge that in the current climate, we’re really doing ourselves and our patients a disservice.”

Innovate with Purpose

Providers need to innovate with purpose; this is especially critical during the ongoing COVID-19 pandemic.

Solutions that are meant to make patients’ lives easier, such as digital therapeutics, aren’t valuable if patients don’t want to use them or don’t feel comfortable using them. These tools should fit seamlessly into patients’ lives; otherwise, they won’t solve the problems they were designed to solve.

“If we don’t talk to patients first, we’re just flushing time and money down the toilet, creating solutions that aren’t meaningfully impacting patients’ lives,” Dr Horonjeff told attendees.

Prescribe Peer Support

Dr Horonjeff said she remembers when she first met another young person with arthritis, at a juvenile arthritis conference 20 years ago.

“I finally found my people,” she said. “It awoke something inside of me that I didn’t even know was asleep. My friends with arthritis are some of my best friends on the planet, because they understand me in ways that other loved ones just can’t; not for lack of caring, they just don’t have the same experiences. I found purpose and an improved self-concept from finally seeing other people that could empathize with the life that I’ve led.”

Dr Horonjeff explained that meeting other people with arthritis completely changed her life and set her on a new trajectory. As a result, she said that she cannot overstate the importance of connecting patients with each other. She encouraged providers to think about prescribing peer support just as they would prescribe treatment. This may be done by connecting patients with support groups, advocacy organizations, or Facebook groups. Peer support can provide patients with an invaluable outlet through which to share their experiences, while also opening their eyes to resources they will not hear about from their physicians.

Strive to Empower Patients

According to Dr Horonjeff, clinicians can change the trajectory of their patients’ lives by broadening the understanding of their own care beyond simple prescriptions (ie, describing technology that may help them, prescribing peer support, and directing them to advocacy organizations so their voices can be heard).

Providers should also educate themselves on ways to empower their patients by collaborating with peers and learning how other clinicians are connecting patients with the resources they need, she said.

“Because of my care team, I was able to take control of my disease, pursue my education, and choose a meaningful career,” she added. “So stick with your patients. Understand what their goals are, and offer them the tools they need to get there.”

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