Navigating our complicated health care system isn’t easy. But clinicians at the Massachusetts General Hospital Transplant Center are taking steps to help patients find their way. By publishing an award-winning patient education book and streamlining the patient evaluation process, the Transplant Center stands out as a leader in patient education.
This summer the Transplant Center received a SilverTransplantation: What Do I Need to Know? (PDF) A panel of experts judged more than 1,000 entries for this elite award. Entries included brochures, audio/video, newspaper and magazine articles, books and other media from hospitals, publishers, ad agencies and trade associations.for the patient education book
“These awards set an industry standard of quality for consumer health materials, and this ‘seal of quality’ helps health professionals find the best consumer health information resources for their programs,” says Patricia Henze, executive director of the Health Information Resource Center, which organizes the National Health Information Awards program.
The book explains the transplant process (from initial evaluation to surgery and follow-up), limitations after surgery, medications and side effects and a glossary of common terms used in transplantation. Over 40 transplant nurses, coordinators, social workers, case managers and physicians developed Transplantation: What Do I Need to Know? (PDF). Since 2008 over 500 patients and family members have received a copy of the book.
Patients accessing the web can also download a copy from the Transplant Center’s website.
“The project re-emphasized our focus on patient care and education, and it demonstrates how much we can achieve as a center, working together,” says Jay Fishman, MD, co-director of the Mass General Transplant Center and director of the Transplant Infectious Disease Program.
Understanding care from the very beginning
Health education is important for all transplant patients, especially those who are too sick or anxious to fully understand their treatment. They should know the signs of graft rejection or infection and ask about new activities, vaccines or life changes (e.g. pregnancy). Because patients are usually first to recognize illness, they should also know when to seek treatment.
“Transplantation is very much a partnership between the medical staff and the patient – at every stage of the transplant experience. The goal is to make this as seamless as possible, so people understand transplantation and know their care providers,” explains Fishman.
As the Transplant Center grew, (it now includes heart, lung, kidney, liver, pancreas, islet and multiple organ transplants), the team expanded its patient education offerings. Clinicians started group education sessions, and patients now receive coordinated evaluations by the entire transplant team, including physicians and surgeons, transplant coordinators, nurses, pharmacists, social workers, a transplant financial advisor and nutritionists.
“Each person provides a different perspective and essential information for patients,” says Fishman.
Making sense of complex medical information
Every organ transplant program at the center provides educational brochures and presentations to patients. Written at 6th grade reading level, the materials strictly adhere to recommended health literacy guidelines. Patients can even reference glossaries and medication lists that explain common side effects.
But Fishman says there’s more to do. The next step is translating the materials into multiple languages. Patients should also be able to manage their health care experience online – by accessing records, refilling prescriptions and even communicating with doctors.
“We have to make sure our patients have sufficient information to recognize problems when (and if) they occur,” says Fishman.