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We
address this interactive textbook to beginning or experienced
clinical researchers who design studies of the epidemiology,
mechanisms, and treatment of common symptoms encountered
in medical, dental, and nursing practice.
Origin
of the project
We started this project in 1997 after working together
on an Institute of Medicine report on improving care at
the end of life (Field
and Cassel, 1997). This report, and the proceedings
of two scientific workshops that followed soon thereafter
(Lunney,
1998; Portenoy and Bruera,
2003), emphasized the paucity of research and abundance
of research opportunities in symptoms such as pain, dyspnea,
nausea, and fatigue, and the value of applying insights
into neural mechanisms and clinical research methods across
symptoms.
During
these meetings, the NIH extramural program officials responsible
for symptom research noted that a major limitation of funding
for these concerns was a shortage of investigators trained
in these areas and a corresponding dearth of well-written
grant applications (Foley
and Gelband, 2001).
To assist
in the development of new researchers with a cross-disciplinary
perspective, NIDCR approved Mitchell Max's proposal to produce
this textbook in early 1998. Kathleen Foley, Russell Portenoy,
Gary Morrow, Charles Loprinzi, Joan Shaver, and Virginia
Carrieri-Kohlman advised the editors in designing this new
genre of "interactive clinical research textbook,"
which we produced with the winning contractor, New England
Research Institute. The contract was completed in November,
2003.
Advantages
of Interactive Format
For several decades, the NIDCR pain group has trained a
stream of pain researchers who have gone on to establish
innovative programs. At the weekly NIDCR conference, investigators
from disciplines such as basic neurobiology, medicine, dentistry,
nursing, and psychology dissected several new datasets that
members had collected. They quickly learned about the perplexities
and catastrophes WHICH bedevil exploratory research, and
about the design strategies to maximize the yield and hedge
the risks. Only a few universities have the critical mass
in pain and symptom research to reproduce this live experience.
In order
to simulate this thought process for our readers, this Clinical
Symptom Research textbook was designed to USE an interactive,
web-based format. We urged our authors to include as many
examples of real data as possible, with interactive questions.
This format offers certain advantages for a clinical research
training text::
- A
web-based design offers ease in updating and facilitates
links to supplementary materials.
- We
have included resources such as measurement tools and
additional readings.
- This
format also lends itself to adding optional readings for
the advanced reader, such as commentaries on each topic
by experts in another discipline. For example, statistician
Eugene Laska's comments on the analgesic clinical trial
presentation in Chapter 1 provide one prototype in our
text.
We have
not had time or funds to develop other potential advantages,
such as on-line discussions and other interactive inventions.
How
to Use the Text
Most
readers to date have used the text as a stand-alone tool.
NERI's count of "hit rates" shows that as of September,
2003, approximately 500 readers per month are working through
a complete chapter (Figure 1).
Click
to enlarge the image
We
suggest that the text be used within a course, seminar series,
or other context in which the students have embarked on
a real research project and interact with other symptom
researchers.
The
coauthors taught a symptom research seminar in spring, 2003
(Appendix)
in which we assigned some of the chapters along with other
articles and chapters pertinent to the week's topic.
Opportunities to adapt or expand the
text
Because the US Government has produced
the text, it is
in the public domain and anyone may adapt or excerpt it freely
with appropriate citation. Anyone interested in the future development of this
tool
may contact Mitchell Max (mitchell_max@nih.gov)
.
Acknowledgments
We thank NIDCR for support of this project, and the following
individuals for important contributions:
Ron Dubner, the founder and chief of the NIDCR
intramural pain branch for more than two decades, provided
the real-life research training model we have tried to emulate.
Russell
Portenoy and Eduardo Bruera pointed out the advantages of
a cross-symptom perspective and shared the unpublished chapters
of their textbook (Portenoy
and Bruera, 2003).Michael
Weisberg, Craig Locatis, and Jo McEntyre of the National
Library of Medicine showed us their innovative educational
technologies and provided invaluable advice. Ray
Dionne and Richard Gracely offered advice and assistance
during the early stages of contract development. Christian
Stohler advised on the best authors and topics relevant
to orofacial symptoms. The project
directors at NERI, Sharon Tennstedt, Randi Triant, and
Lisa Marceau and their staff were always creative, responsive,
on time and under budget. N IH
contract administrators Kristi Cooper, Marion Blevins,
and Deborah Spillan showed us how to achieve the flexibility
needed for an innovative project. Finally,
we thank our authors who graciously accepted our demands
for multiple revisions to make their chapters as interactive
as possible.
Mitchell B. Max
Joanne Lynn
October,
2003
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