07:10 AM

The Expert Series: improving health visits for people with lupus

In this Lupus Foundation of America "The Expert Series" podcast episode, Jillian Rose, PhD, MPH, LCSW, assistant vice president of community engagement, diversity and research at HSS, discussed implicit bias and how to improve medical visits for individuals with lupus.

“For patients you are the expert on your body. You are the expert in the care culture that you would like see play out. We need to help empower our patients and see them as partners in care. We know the many challenges that are involved in caring for a person with lupus, and getting a diagnosis, because there is so much that is still a mystery about this autoimmune illness," said Rose. "The best historian is the patient themselves. The best intel they’re going to get is not always from a laboratory test." 

She continued, “I like to empower patients to ensure that they are in a care relationship where their providers are listening to them, where they feel heard. Often times lupus will disproportionately affect women who are going to rheumatologists and they don’t feel heard or dismissed.” Rose added, “I empower patients as well that if that partnership is not there then it’s time to start looking for a second opinion. Because that can be detrimental to your quality of life and care outcomes. That delay with someone not listening, who is not really partnering with you, can delay your ability to get a diagnosis or to receive an appropriate treatment.”

Rose underscored the importance of providers asking questions so that they can learn about the challenges their patients face. And for patients to disclose what challenges they might face to their providers, so that together in that partnership they can come up with the best solutions. “We are often making judgements and decisions about who people are, how they look, and we’re often wrong,” she noted.

Rose concluded, “It’s important not to just think about implicit bias in terms of some of the characteristics like gender or race. It’s important to think about implicit bias in the context of the judgements we make about people. What’s their socioeconomic status? Who is in poverty? Who can't afford food? For right now, especially in this pandemic, it has revealed to us that exploring, assessing and asking the right questions is so critical because this pandemic has touched everyone in a different way. Our assumptions are not going to move us to the place where we can provide the best care for our patients.”

Listen to the full episode at Lupus.org.