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
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
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
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.