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Volume 3 Number 2 |
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COMMENTARY Let’s work together Charles H. Spencer Collaboration and cooperation between distant institutions and organizations nationally and internationally
happens all the time and may improve even more with the efforts of PRINTO and
CARRA. But local and regional
cooperation is an equally, if not more important issue.. It is often harder to
work together in urban areas and regions where several centers share the same
patient catchments. Yet this collaborative and cooperative effort is just as
important as our national and international efforts. This goal is often challenging and requires attention
to practice habits: 1) competition for
patients especially using marketing; 2) providing second opinions; 3)
recruiting patients with certain diseases aggressively for research purposes;
4) trying to corner patients with one disease in any one area; 5) emphasizing
elite institutions or Mecca’s over the average pediatric rheumatology center.
These issues are all interrelated and bear some examination and discussion. Competition for patients and
marketing With our zero-sum background, it’s
natural for us to enter into a competitive mode in large urban areas that may
be decentralized and balkanized by several pediatric medical systems and
insurance programs. Plus we may feel that our center, and we in particular,
do it best, whatever it is. I am convinced that for the next 20-30 years,
there are more than enough patients for everyone in most countries and we
should trust that other centers, and each of our colleagues in these centers,
can do just as well with patients as we do. When you have a patient move to
your center from another and you look askance at the treatment received,
remember that you are seeing the numerator but have no idea of the
denominator. How many patients have been treated at that center and done well
with that treatment approach that we don’t favor? Is the treatment issue in
question evidence based? Maybe it is, but often not. We should be generous
and tolerant. There is plenty of business for us all. Providing second opinion
consultations We all are likely to be familiar with this academic
consultation behavior. A patient of pediatric rheumatologist #1 (PR#1) goes
to another center for a consult, either referred for a second opinion
(parents’ or doctor’s idea or both) or going on their own by word or mouth or
online marketing. The pediatric rheumatology consultant (PR#2) criticizes the
original center and physician’s medical care. The criticism can be just as
much in what is not said as in what is said. The parent transfers the child’s
care to the new center. The parent says that they are only interested in
what’s best for his/her child. PR#2 justifies their behavior by his/her
belief that he/she knows best for the patient and the stakes are too high to
not let the parent and patient know his/her strong opinion. He/she may
believe that it is only right and appropriate that the child’s care be
transferred to the second center. A desire to use that patient in a research
project may also play a role. PR#2 often does not communicate with PR#1 at all
or by a letter weeks later. But is this behavior best for the care of children
with rheumatic diseases as a group or for the care of any one patient? It may
be useful for one patient at any one time. But over time this consultation
behavior is a “no win” situation for all. How is it bad? First of all, it may
sour relationships between other compatible colleagues. No one particularly
likes being disrespected. This in turn can encourage retaliatory behavior,
gossip, and stress. Plus, if there was a problem in quality of care, PR#1 may
not learn anything. As noted, PR#2 may not phone or send a letter to PR#1. If
he/she does, the tone may alienate PR#1. PR#1 may not be open to suggestions
or possible improvements in his/her usual practice guidelines. PR#1 and
colleagues may never want to willingly refer a patient in the future to the
other medical center for a second opinion and some brainstorming and
cross-pollenization. Why should they? They might just get criticized again.
The possible benefit of synergy and symbiosis are lost. There is other fallout. Our ability to do excellent
research to some extent depends on our ability to work together. These
competitive consultations make this cooperation and collaboration essential
to clinical and basic research less likely. How do we work together in CARRA
and PRINTO if we are not getting along well due to these consultation
practices? Granted it is not as simple as I’ve described it.
Sometimes patients and families are going to move from center to center one
way or another due to convenience, reputation, ambience, moving to a location
closer to second center, personality, doctor-shopping, and who knows what.
Insurance sometimes mandates switching centers. That is a given. Sometimes we
disagree with the present treatment so much that it is hard to be positive
about another center’s and pediatric rheumatologist’s care. But these
consultations need not be critical, negative consultations and include overt
efforts to recruit patients from one center to another. Isn’t this behavior just good marketing and center
development? No, not really. Any patients you gain by these activities are
likely to be outweighed by the friendly consultations and clinical and
research collaborations one may receive if one practices a friendlier,
collaborative, and educational consultation practice. Recruiting patients with one disease
for research purposes. Many of us have one disease that
interests us the most and we may have research projects in diagnosis,
treatment, or the basic or clinical science of those illnesses. We may have
websites that promote our expertise in that area or other means of marketing.
This is a slippery slope as there is a fine line between ethical marketing
and creating an atmosphere that suggests that one center is the only center
to care for a disease. Parents go online and call and may be encouraged to
come for a second opinion. Providing
supportive consults for the original center is the better course and only
taking on the patient if the original physician requests the transfer or the
parents say that they are not going back to the original physician. If this
consult is done, it should be done with the full intention of sending back
the patient to the initial rheumatologist with useful suggestions and seeking
cooperation with that rheumatologist in any research endeavor. It is
important for the consulting rheumatologist to restrain herself or himself
from actively courting the patient and the parents, subtly or overtly. It’s
not easy sometimes, but it’s the right thing to do. Elite medical centers and ‘Meccas’ Each of us would probably like our
center to be a I would argue against the practice
of elite medical centers trying to attract many of the patients with a
certain disease to their center, including teens. This effort can be for
research purposes, for teaching and patient care, for financial marketing,
and for reputation building. I think that we can phone the consultants (often
internists), e-mail them, fax them, and ask for help when they can provide
it. But I’d question the practice of referring all Takayusu teens to a
referral center because they have an internist Takayusu clinic, no matter how
many grants they have and how long their CV. Most are still internists and
often treat teens as young adults, fully developed emotionally and
physically. Is lupus the same disease in a 14 year old as it is in a 35 year
old patient? I would think not. Similar, but definitely different. So ask
their help but keep our patients as our team programs should be able to
provide the best overall care. Turning this around, we should
attempt to work in a team-like fashion with adult rheumatologists who see
kids with rheumatic disease at a distance from our center. We may not be as
sympathetic with adult rheumatologists who see children right under our
noses. But this cooperation and collaborative effort is what’s best for the
children. It may be best for us to see the sickest kids in an adult
rheumatologist’s practice once every 6 months or once a year to add some new
ideas. This emphasis on the integrity and
development of each rheumatology center regardless of size or resources may
appear to conflict with the “centers of excellence” concept, but it doesn’t
have to. The major pediatric rheumatology centers can still be centers of
excellence and remain collaborative, cooperative, and respectful of other
centers as well as pursue their research and clinical goals. A consultation protocol A
protocol such as this may help: 1)
In any one urban area, PR#2 immediately calls PR#1 in the area or region
after PR#2 sees a patient of PR#1, whether the consultation is
physician-initiated or parent-initiated. 2)
The consultant rheumatologist and staff strive to present a neutral and
professional consultation, devoid of any attempt to sell the patient and
family on the merits of their program, hospital, and individuals. 3)
In particular, the PR#2 should do his/her best to broadly support PR#1and
her/his program (even if it’s different), while offering constructive
suggestions to improve the care. 4)
The consultant should endeavor to send the patient and family off with some
new ideas with a pledge to call the original physician and discuss the case
as well as provide a consultation letter to the physician and family. The
family should be openly encouraged to return to the first rheumatologist even
if the consulting physician thinks that he or she could do it better. 5)
If the family is determined to switch care, the consulting physician should
call and write the original doctor and discuss the consultation and the
transfer of care. The idea is to keep things open and transparent, with an effort to
educate each other rather than compete and dominate. In 2005, there are
plenty of patients for everyone and it may be best if we move from the
attitude that we do it best to an attitude that let’s all do it well
together. You may wonder who am I to talk? I
could be better in this area. Yes, I’ve turned on the charm and hoped that a
second opinion consultation patient may stay with me, especially if the child
is cute. I’ve not communicated well with the other rheumatologist. Most of us
have been possessive of new patients at any one time. But in my opinion it is
not the best path for our young subspecialty and our patients. “That’s
naïve”, people will say. Maybe it is.
But we should be able to improve in this area. This is not about one
person, one city, one region, one country. In my discussions with colleagues
from all over the world, these problems are universal. Conclusion We are in some ways a unique subspecialty. We’re a
small subspecialty and are likely to remain so for awhile. We are mostly
outpatient, often fly below the radar, but with fascinating, amazing,
challenging illnesses to diagnose, treat, conquer and eliminate. We must bond
together to help the 6 million children in the world with rheumatic diseases,
working together internationally, nationally, regionally, and locally. Short-term
individual gains are only to mean long-term losses for our community. We can
limit these practices while our brotherhood remains small. There is more than
enough work for all of us. Charles
H. Spencer |
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