CLEVELANDPatient education can be improved through the use of new technologies such as computer networks and CD-ROMs. At the Cleveland Clinic Foundation, a website provides disease information and clinical trial updates for multiple myeloma patients. At the Princess Margaret Hospital (Toronto), cancer information for both patients and professionals is offered on its local intranet and on CD-ROMs. These cancer education efforts were described at the 33rd annual meeting of the American Association for Cancer Education.
The Cleveland Clinic Myeloma Program created the multiple myeloma website in 1996 in response to the limited information available about the disease, said Mohamad Hussein, MD, director of the Myeloma Program.
The website includes information on the diagnosis and management of multiple myeloma, research into new drugs, a glossary of terms, clinical trial information for amyloidosis as well as multiple myeloma, links to other web resources, and a list of email addresses of patients and families who are interested in communicating with other families. A newsletter has been in place for the last year to the email members.
In June 1996, the first month the website was available, it was visited by Internet users 74 times. That number has grown steadily, with 431 visits in June 1997, 677 visits in June 1998, and 1,524 visits in June 1999. The patient-to-patient email page is one of the most popular features, Dr Hussein said.
The number of multiple myeloma patients served by the Cleveland Clinic Foundation has increased as well, from 67 patients in 1996 to 200 in 1999, according to available figures. This growth is due, in part, to the website, he said.
Development of the website continues, with the planned addition of audio in the future. The address for the site is www.ccf.org/mm/.
The Princess Margaret Hospital, in collaboration with a multimedia production company (Jack Digital Productions), has created an interactive electronic program for patient education and continuing medical education (CME).
The Oncology Interactive Education series incorporates computer graphics, animation, video, music, and narration. It is available on CD-ROM and on the hospitals intranet system (not the Internet), which serves 17 patient resource centers as well as the hospital.
The series was developed to address gaps the hospital saw in patient education, said Pamela Catton, MD, MHPE, director of oncology education.
The hospital realized that many patients were prepared to research their disease, yet were often unable to find appropriate print materials. Verbal information supplied by health care professionals also had its pitfalls.
We tended to rely too much on informal verbal communication and neglected other forms, such as printed materials, to reinforce learning, she said, adding that physicians variable communication skills and lack of consistency in the message can leave patients confused.
By going electronic, the hospital will be able to provide consistent, accurate information, Dr. Catton said. Ideally, the rich graphics and animation will make the information available even to patients who speak English as a second language or who have hearing impairments. The series is also designed to accommodate different learning styles and to promote self-directed learning.
Each title in the series focuses on one particular cancer (except for bone marrow transplant) and includes information on the particular features of that cancer: diagnosis, prevention, early detection, treatment, supportive care, answers to frequently asked questions, and patient interviews.
A professional version of each title is also available. A continuing education version, which contains interactive case series, is under development and will be accredited by the University of Toronto.
Titles for melanoma, blood and bone marrow transplants, and cancers of the pancreas, lung, and breast have been completed, with another nine titles due this year.
Each title in the series cost about $150,000 to $200,000 Canadian to produce. We were able to raise $30,000 per project from the Princess Margaret Hospital Foundation, Dr. Catton said, and $50,000 to $200,000 per project for some sites from several drug companies. Not all sites have a sponsor yet, but we were able to finish because of donated time from the production company.
Ordering information for the CD-ROMs and a demonstration of the oncology series can be seen on the web at www.jackdigital.com.