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A Patient Guide

Thursday, September 27, 2012

Spurred by a personal experience with misdiagnosis, medical student Mohamed Zeidan created a tool to improve communication between doctors and patients.

Note: Mohamed Zeidan tragically died in a bicycle accident in September 2014. He was posthumously awarded a doctorate from the Tufts University School of Medicine a year later. His Emergency Department Patient Advocates Program, now renamed Zeidan Patient Advocates in his honor, continues to be a service learning program at TUSM, allowing current medical students to continue the important work he started.


First they told him it was the flu. He said it didn’t feel like the flu. They said it was the flu. He said he had recently returned from the tropics, where he’d had repeated contact with a variety of untreated waters. They said that sounded like the flu. He said he was a medical student, and he didn’t think it was the flu. They told him to be sure to keep his fluids up.

At the next hospital, with a fever of 104 for the third day in a row, they said it was pneumonia. He said he had been in Uganda, had been swimming in Lake Victoria. Walking pneumonia, they said. “But my fever…,” he said. Classic pneumonia, they said. “I’m not leaving,” he said.

The next day he saw someone from infectious diseases. They ran a lot of tests and tried various treatments, with mixed results. One turned all his fluids orange.

Just as he was starting at the Tufts University School of Medicine, Mohamed Zeidan, M15, found himself on the patient side of the health care system.

Having spent the summer as a volunteer worker for a public health organization in Uganda, Zeidan began experiencing a range of symptoms after he returned to Boston. Eventually, he was diagnosed with the parasitic infection schistosomiasis. Also known as ‘blood-flukes’ or ‘snail fever,’ schistosomiasis is one of the most widespread parasitic diseases in the world, infecting hundreds of millions of people each year, mainly in tropical Africa; the World Health Organization ranks it second only to malaria on its list of devastating parasites. Highly treatable, it is nevertheless not the first diagnosis that occurs to emergency room doctors and nurses in the United States – it took months to fully resolve Zeidan’s case.

“I don’t fault the doctors,” he said. “The ER is a tough place to work.”

What struck him was not the difficulty in diagnosing a tropical disease little seen in the Northeast, but the feeling of not understanding what was happening with his treatment.

“It was really unclear what was going on,” said Zeidan. “I felt in the dark. And if I felt that way, I started to think it must be even more difficult for someone who isn’t a med student, and has even less understanding of the system.”

Zeidan wanted someone he could have a conversation with. Someone he could ask questions, and who would talk to him to make sure he understood what was happening.

“Doctors and nurses do it as best they can,” he explained. “But because of the hectic environment, they often don’t have time to do all they would like.”

Zeidan crafted a proposal that would have medical students meet with patients before they were discharged, to review their diagnoses and treatment plans. Then they would follow-up, checking in after a week, and then again one month later, to learn about any barriers to treatment and to work with the patients to resolve them.

“No matter what the patient’s condition is, there’s always a question they haven’t had answered,” he said. “It doesn’t take a lot of medical expertise per se. The key thing is really sitting down with the patient, letting them know that they have time to go over what has happened. You can see their demeanor change, they relax. Vocalizing concerns reduces anxiety, and the ER is stressful and overwhelming.”

The proposal won Zeidan an Albert Schweitzer Fellowship. A competitive, national program, graduate students selected as Schweitzer fellows partner with community organizations to develop and implement yearlong, mentored service projects that sustainably address health disparities. The four Tufts-Schweitzer Fellows selected this year are supported by the Tufts health sciences schools, with training and other assistance from Tisch College, which helped bring the program to Tufts. Partnering with the Tufts Medical Center Emergency Department, Zeidan began his fellowship this summer meeting with patients and laying the groundwork to expand during the academic year.

“You have to understand a system before you try to change it,” said Zeidan. “I learned a lot about who does what in the ER, while trying not to step on toes. But I’ve been pleasantly surprised by how receptive people were to the idea. The ER docs support it, in part because they want to know what happens to patients after they leave acute care. People have seen that there’s a problem, and they resonate with this approach to a solution.”

Other medical students have also responded to the idea, and Zeidan has a list of volunteers.

“It’s really beneficial for future physicians to get this side of the story,” he said. “We’re taught in class how to treat disease, but we don’t always learn the social context of the disease, and often times you can’t treat one without the other. This is an opportunity to learn where patients are coming from; students get really excited about that. It will help us be better physicians.”

Recognizing the importance of this type of out-of-classroom learning, medical students volunteering with the program will receive Community Service Learning (CSL) credit for their work. One of the most robust medical CSL programs in the country, this program ensures that all students graduating from the School of Medicine have spent at least 50 hours working with and learning from the community.

“There’s something to be said for understanding that we live in a community,” said Zeidan. “As much as we work to improve our own lives, our actions have influences, and active citizenship means being aware of how we can affect that larger community. We all see things we’d like to have changed, you have to have the courage to do something about it. Even if it’s not the right way in the end, it’s a step forward, and you learn from it.”