Imagine beginning chemotherapy without being aware of the side effects. You’re feeling sicker than you felt before the medication, experiencing nausea, muscle weakness and losing your hair. You wonder if this is normal, but you can’t interpret the drug safety information because you don’t know how to read. You’re tempted to stop taking the medication.
Realizing that many of their patients had grappled with this dilemma, cancer care providers at Queen Elizabeth Central Hospital in Blantyre, Malawi approached Global Oncology, a non-profit co-founded by Ami S. Bhatt, MD, PhD, for help.
With one oncologist and an overstretched clinical team, clinicians at Queen Elizabeth recognized they often don’t have time to explain the chemotherapy treatment process to each patient. And, many of these patients struggle to read and comprehend complex instructions and medical terminology.
So they decided to create clinically relevant and culturally appropriate education materials designed for a low literacy patient population.
Veronica Manzo, a first-year medical student at Stanford and a member of Bhatt’s lab, is part of a team of Global Oncology volunteers developing the educational materials. She began volunteering with GO while she was working at the Dana-Farber Cancer Institute and is working to establish a chapter of the GO Young Professional Alliance at Stanford. The group held its inaugural meeting on campus last month.
“The existing materials were often too high-level for low literacy patients – wordy, complex and not designed for that culture or audience,” Manzo told me. “We looked at the most common chemotherapies in Malawi and created materials designed to target the specific side effects associated with the treatment.”
Together with Cambridge-based design firm, THE MEME Design, Manzo and a team consulted with medical and health-literacy experts to simplify complex medical information – incorporating simple language and culturally relevant illustrations – and package it in a way that could be easily printed and distributed by partners in low resource settings. The final 8-page booklet, “Cancer and You,” was introduced at Queen Elizabeth last summer and has become a helpful tool that educates patients and caregivers and improves treatment adherence.
Since the project began in 2013, the team has also collaborated with Partners in Health to modify and implement the materials in Rwanda and Haiti, and they hope to expand the work to Guatemala, India and additional sites in Africa and South America. To help support this expansion, Global Oncology has launched a 30-day fundraising campaign through Global Giving with the aim to raise $5,000 from 40 donors by the end of June.
“It’s exciting to see the positive impact the patient education materials have had in Malawi and Rwanda, and we’re looking forward to expanding this initiative to help close the gaps in patient cancer education worldwide,” said Bhatt, director of global oncology at the Center for Innovation in Global Health.
Rachel Leslie is the communications officer at Stanford’s Center for Innovation in Global Health.
Previously: Oncology hashtag project aims to improve accuracy of online communication about cancer, Stanford fellow addresses burden of cervical cancer in Mongolia and Providing medical, education and technological tools in Zimbabwe
Images by Global Oncology and THE MEME Design