Vol. 42 No. 5 November 2011 Journal of Pain and Symptom Management 649

Special Section: Quality Improvement Projects

ForewordQuality Improvement Efforts: Advancingthe Science of Palliative CareDavid J. Casarett, MD, MA, Sydney Dy, MD, MSc, Carol Spence, PhD,and Dale Lupu, PhDPerelman School of Medicine, University of Pennsylvania (D.J.C.), Philadelphia, Pennsylvania; Johns

Hopkins Bloomberg School of Public Health (S.D.), Baltimore, Maryland; National Hospice and

Palliative Care Organization (C.S.), Alexandria, Virginia; American Academy of Hospice and

Palliative Medicine (D.L.), Glenview, Illinois; and School of Medicine and Health Sciences (D.L.),

George Washington University, Washington, DC, USA

The vast majority of research and academicendeavors have been built on large grant fund-ing, particularly from federal sources. This istrue in virtually all fields in the U.S. and inmost other countries that have national re-search programs. Research funded by nationalor state governments is typically both generousand competitive, a combination that makesthese grants highly sought after, and confersconsiderable status on recipients. Those grantsthat provide ‘‘indirect’’ or overhead funding,such as large awards from the NationalInstitutes of Health in the U.S., are financiallyattractive to institutions as well. These grantshave become the metric by which institutionsand individuals are judged.

But are these large grants really the best wayto generate new knowledge? Are they the bestway to advance the science of a field? Are theywhere the field of palliative care should be put-ting its time and energy?

In some ways, they are. Certainly, the pastfew years have seen high-profile descriptive1e4

and interventional5e7 research studies thathave received considerable attention. These

Address correspondence to: David J. Casarett, MD, MA,Perelman School of Medicine, University of Penn-sylvania, 3615 Chestnut Street, Philadelphia, PA19104, USA. E-mail: casarett@med.upenn.edu

Accepted for publication: August 19, 2011.

� 2011 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

studies have defined old problems in newways, identified new problems, and helpedto identify best practices. In doing so, theseand other studies have contributed to thepalliative care evidence base and have gar-nered media attention for what is a growingfield of research. So there is a prominentrole for large-scale studies, and particularlyrandomized controlled trials, which advancethe science of palliative care and lend credibil-ity and prestige to the field.

However, these studies can be slow to pro-duce results, often requiring years from incep-tion to publication. They are also necessarilylimited in number so that only a small propor-tion of promising ideas and interventions canbe evaluated. Therefore, these studies area highly effective but usually inefficient wayto generate new knowledge.

Several recent developments suggest thatwe may begin to see knowledge generatedthrough new mechanisms that are more effi-cient. For instance, large-scale quality improve-ment (QI) efforts, such as the hospiceindustry’s Family Evaluation of Hospice Careand the Veterans Administration’s BereavedFamily Survey, have been very effective in defin-ing variations in care and pointing to best prac-tices. Similarly, the Coalition of HospicesOrganized to Investigate Comparative Effective-ness network is using electronic health recordsto compile a benchmarking data warehouse

0885-3924/$ - see front matterdoi:10.1016/j.jpainsymman.2011.08.001

650 Vol. 42 No. 5 November 2011Casarett et al.

for a national sample of hospices. Statewide QIefforts like the Palliative Care Quality Networkin California are in the early stages but showconsiderable promise as well. All these effortshave the potential to help individual organiza-tions and providers improve the care that theyprovide, and in the process, help define whatgood palliative care should be.

Perhaps even more exciting, though, arelarge-scale local QI efforts. As palliative caregains increasing attention (at least in part be-cause of the highly publicized results of someof the studies mentioned above), entire healthcare systems are initiating programs, interven-tions, and outcome measures. In the U.S.,successes at Harvard’s Partners HealthCareSystem, the University of Pittsburgh MedicalCenter, and Indiana University have been par-ticularly notable. These systems are investingsignificant resources and expect to see a returnon their investment measured in terms of im-proved outcomes, better patient and familysatisfaction, and improved efficiency. Each ofthese systems is a proving ground on which in-terventions and best practices can be tested,adapted, and improved.

The articles published in this Special Sectionoffer a fascinating and, we hope, a prescientview of this approach to generating new knowl-edge. Together, they represent a cross section ofa range of projects designed to improve care inan institution or a region. These projects havebegun with plausible best practices, many ofwhich are evidence based, and have imple-mented those best practices in real-worldsettings. Some results are unsurprising, andsome might even be described as unremark-able. But others offer intriguing concepts, ideas,and interventions. Most importantly, all theseinterventions have been implemented bysmall groups of people working in resource-constrained environments. That is, these are in-terventions that will be within the reach ofmanyhealth systems.

Thereare caveats, of course, to the relianceonthese sorts of projects to identify best practicesand to improve care. First and foremost, it is in-appropriate to use QI projects to circumventwhat have become international requirementsfor ethical oversight. Second, QI projects needto be conducted rigorously enough to ensurethat their results can inform practice, at leastin the setting in which they are conducted.

Third, and perhaps most important, it will beessential that QI projects are reported and re-viewed rigorously enough to ensure that thepresentation of their results is unbiased. Fur-thermore, dissemination of ‘‘negative’’ resultsis as important as that of ‘‘positive’’ results.Just as the publication of clinical trials is typi-cally biased toward positive results and effectivetreatments, reports of QI projects are also sus-ceptible to publication bias. Indeed, it is likelythat QI projects are particularly vulnerable.Because QI projects are generally not conduct-ed as rigorously as research studies are, it is eas-ier to question the methods they use and theresults they produce. Whereas a carefully de-signed and adequately powered randomizedcontrolled trial will generally find a home ina journal, the same is not true of QI projects.Therefore, in sharing the results of QI projects,it will be important to share the results of both‘‘successes’’ and ‘‘failures,’’ both in results andin measuring outcomes, so that we can learnfrom both.Despite these caveats, there is a great deal

that we can learn from QI efforts. In fact, wecannot afford to ignore these sources of knowl-edge. In the U.S. and many other countries,the economy has led to cuts in federal and pri-vate funding for research, and particularlyfunding for large-scale projects. Furthermore,because the science of palliative care is rela-tively new, and its cadre of researchers is small,we will need to look much more broadly tofind evidence that we can use to improve care.Therefore, although large-scale studies and

particularly randomized controlled trials willcontinue to hold a preeminent place in the pan-theonof evidence, it will be essential to promoteand disseminate the sorts of projects describedin this section. Before this will be possible,though, it will be essential to develop tools, re-sources, and infrastructure (e.g., multisite col-laboratives) that will facilitate projects that arerigorous enough to produce meaningful re-sults. In addition, there is also an urgent needfor efforts to facilitate the dissemination of re-sults and to promote dialogue about processesand outcomes. Many QI projects cannot meetthe criteria for usual journal publication butare still essential to efforts to innovate, learn,and improve. Therefore, efforts to promoteQI must be accompanied by parallel effortslike this one to ensure the dissemination of

Vol. 42 No. 5 November 2011 651Foreword

the positive and negative results of QI projectsthat might not otherwise fit in a research-oriented journal.

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