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Lois Greene
Director of the Cathedral Regional Cancer Center
As the Director of the Cathedral Regional Cancer Center,
Lois’s responsibilities include outreach and screening
for medical oncology, hematology, and hemophilia. Lois advises
that the majority of patients go to see a doctor and expect
to be told what is wrong with them, and how it will be “fixed.”
Only recently has the medical community embraced the idea
that communication between both parties is essential in
identifying and developing effective treatment and outcomes.
Lois advises that health professionals need to help patients
understand that “they are part of the process and
not there just to be dictated to.”
The availability of information on Internet health sites
has had a significant impact on younger patients. Unlike
generations before them, these patients are often better
informed then their physicians about new procedures and
medications. This serves to further strain the doctor/patient
relationship. Lois states that insurance companies play
an important role in the physician/patient dynamic. Insurance
rules and regulations often dictate treatment modalities
and medications. While she admits that managed care or charity
care cases often leave doctors little time to engage in
“shared and informed decision making,” the importance
of effective communication strategies becomes even more
important. It is the responsibility of every member of the
health professional team to make sure that the patient understands
what is being said, and what his/her options are, and to
actively engage in an agreed upon treatment plan. Greene
can also articulate cultural challenges faced in the delivery
of healthcare services.
Gideon Sofer
Crohn’s Disease Advocate and Patient, President
and Founder, IBDcure.org Foundation, International (IBD:
Inflammatory Bowel Disease)
Gideon, now 21 years of age, was diagnosed with Crohn’s
disease at the age of 12. Since his diagnosis, he has founded
the Ibdcure.org
Foundation (Inflammatory Bowel Disease), a foundation dedicated
to increasing awareness of Crohn’s disease. Crohn’s
Disease is an “auto-immune” and incurable illness
that causes painful inflammation in the intestines, small
bowel and colon.
As an infant, Gideon was diagnosed with Bechet’s
disorder, which is an ulcer-based disease causing lesions
on the skin and mouth. At the age of 5, doctors thought
that it might be Crohn’s disease, but never confirmed
it. Gideon has had significant health problems including
several operations during his life. He has been on a variety
of drugs to treat his disease including steroids, which
would make his cheeks puffy and as a result kids would make
fun of him.
He came up with the idea to start his foundation, IBDcure.org
Foundation, International during one of his hospital stays
while he was a sophomore in high school. The IBDcure.org
Foundation is composed of a stamp initiative, lecturing,
advocacy and research. Doctors didn’t have a lot of
answers regarding Crohn’s, so Gideon decided to create
his foundation so that people can learn more about the disease.
In 1999 he started a stamp campaign to create a stamp advocating
for Crohn’s disease. Gideon has written to Senators
and his Congressman to push for the stamp. His “Make
a Wish” will be fulfilled early in 2005 – he
is meeting with the United States Postmaster General to
discuss the Crohn’s stamp. Gideon dedicates his life
to helping ensure equal opportunity for people with diseases
and disabilities. When physically able, he lectures at schools,
universities and conferences to try to motivate other students
and individuals to pursue their dreams. He urges physicians
to take a look at their character. So many doctors have
felt sorry for him and he said that as a person with a disease,
you do not need to be pitied. The last two years have been
very difficult health-wise for Gideon –much of which
he has spent in hospitals. He looks forward to feeling better
and using his scholarship to UC Berkeley in the near future.
Helen Osborne
Author, Expert on Health Literacy, Founder, “Health
Literacy Month”
Helen Osborne is widely recognized for her expertise in
health literacy and patient education. As a speaker, writer,
and consultant, Helen helps healthcare organizations communicate
in ways patients and families can understand. She is president
of Health Literacy Consulting in Natick, MA. Founded in
1999, Health Literacy Month is a grassroots campaign that
is held during the month of October. Working with health
professionals, literacy specialists, professional associations,
and healthcare organizations around the world, Helen continues
to lead this international campaign to raise awareness about
the importance of understandable health information.
As an occupational therapist, she has treated many patients
who have limited literacy, do not speak English, come from
other cultures, are older, and have trouble hearing, seeing,
or remembering. Helen gives concrete techniques that both
healthcare professionals and patients can use to improve
communication. She advises that healthcare professionals
need to know in general to whom they are speaking and be
able to identify potential barriers to communication, be
committed to communicating in “whatever way works,”
this includes the use of drawings, acting out desired behaviors,
etc. Osborne notes that confirming understanding can best
be facilitated by incorporating “teach-back techniques.”
I.e., instead of saying “Do you understand?”
say, “I want to make sure I explained this correctly
– tell me or show me what you will do when you go
home.”
Terry Shlimbaum, MD
Family Practice Physician, Board Chair of the NJ Academy
of Family Physicians
In addition to serving as the Board Chair of the NJ Academy
of Family Physicians, Dr. Shlimbaum is Medical Director
of Outpatient Teaching Sites for Hunterdon Family Practice
Residency Program. Terry advises that healthcare literacy
issues and failures in communication are serious healthcare
problems and are costly both financially and physically.
Patients will be healthier if physicians communicate better.
The doctor/patient relationship requires trust and understanding.
Dr. Shlimbaum advises that physicians need to do the following
to assist their patients: 1. acknowledge that a communication
problem exists, 2. use common language to explain medical
conditions and technologies, 3. ask the patient to repeat
what has been said, or write down the information and then
ask to have it read it out loud, 4. search for new models
and methods to help with their communication style.
Terry advises that he also incorporates the use of a “translating
phone” when working with patients who are non English-speaking.
While in the examining room, the physician and patient use
a translating service via the phone. This real-time translating
service translates both parties’ questions and answers.
Shlimbaum admits that he has access to these types of services
because works in a teaching hospital. Less affluent medical
systems or offices may not be able to afford this type of
service. He notes that the best-case scenario would be to
have a bi-lingual health educator available to work with each physician, though
the cost for this service would be prohibitive. Terry states that the
use of translators in any capacity is critical, however,
and states that it does take much longer than the standard
15-minute visit.
He advocates for physicians and other healthcare professionals
to develop models that will speed the process and increase
the likelihood of a positive outcome. Dr. Shlimbaum also
suggests that patient’s have a “to-do”
list too: 1. be prepared before make the call or visit a
healthcare professional (i.e., pain – be able to describe
where the pain is, how long it has been there, what makes
it worse, what makes it better, etc.) 2. bring all medications
that the patient is taking with him/her to the appointment
and 3. have another person with you to “assist and
points things out.” Patients incorrectly following
their medication regimes accounts for a large number of
hospitalizations. Dr. Shlimbaum feels that this is critical
area of concern in the health literacy field.
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