@article{7badfb154c3a48a0998f9f318c64fb1c,
title = "Challenges to and Lessons Learned from Conducting Palliative Care Research",
abstract = "In response to a 2005 solicitation from the U.S. National Institutes of Health, 16 investigators received funding to test interventions that would reduce the barriers that prevent cancer patients from receiving adequate and appropriate symptom management therapies. Since the awards have been issued, the investigators have met two times and have identified a number of challenges to implementing their respective studies. A survey was conducted that focused on their experiences with hiring and retaining study personnel, gaining Institutional Review Board approval, incurring unexpected costs, challenges to accruing participants, and a listing of standard measures used in the study. The survey was completed online by the Principal Investigator for each project in late 2006 and the initial results were confirmed one year later by resending the initial survey and by a follow-up telephone call. All but one Principal Investigator completed the survey. Obtaining Institutional Review Board approval, hiring and recruiting research personnel, establishing subcontracts, and accruing research subjects were the primary challenges experienced by the investigators. This palliative care solicitation achieved more than its original intent of stimulating research in overcoming barriers to delivering cancer symptom management, palliative care and end-of-life care. From a survey on the challenges and issues that emerged from their projects, grantees were able to identify specific hurdles and their unique solutions that may help other investigators as they plan their program of research.",
keywords = "Palliative care, end of life, research, symptom management",
author = "O'Mara, {Ann M.} and {St. Germain}, Diane and Betty Ferrell and Tami Bornemann",
note = "Funding Information: The early findings from this one time solicitation can serve to assist funding agencies in their development of future initiatives for palliative care research, as well as to guide potential applicants when interacting with a funding agency. As learned from this cohort of investigators, the feasibility for conducting these types of studies is a significant challenge. Investigators should carefully consider funding mechanisms, such as the NIH Exploratory Grant Mechanism (R21), 13 which are specifically designed to support feasibility and pilot studies, before embarking on a larger more long-term project. Although this RFA included a special review panel to evaluate the scientific merit of the applications, this is not always feasible. In the absence of a special review panel, it is imperative that the investigator request, at the time of submission, the expertise needed to review the application. As the field matures and more qualified reviewers are available to review applications, standard study sections will become populated with adequate numbers of reviewers who are knowledgeable and sensitive to the issues facing palliative care researchers. When applying for NIH support, a very important consideration is to contact the Program Director, particularly when there is a specific solicitation. By taking the time to discuss the relevance of the particular project to the goals and objectives of the solicitation, the investigator will get a better sense of how to shape the application so that it is responsive to the solicitation. Investigators seeking R01 funding for their palliative care research projects are not required to cite a specific solicitation on their applications. However, speaking with a Program Director remains critically important. Because palliative and end-of-life issues cut across the expertise and resources of several NCI divisions, no single unit within NCI has been designated as the focal point for palliative care research. The NCI web site can help investigators find information and the most appropriate Program Director. Using the term “palliative care,” a recent search of the NCI web site identified six “Best Bet” links and another 625 links to a variety of documents and reports. 14 Among the six “Best Bet” links, two are particularly informative for investigators. The link entitled “Funding Opportunities in Symptom Management and Palliative Care Research” 15 will yield a listing of all NIH funding opportunities related to this area of research. The other link, entitled “Cancer Research Portfolio: Palliative Care Research Projects,” 16 lists all current NCI-funded projects, the Principal Investigator(s), and the NCI Program Director assigned to the project. A cursory review of the 168 funded projects yielded five different Program Directors in three different divisions managing these grants. ",
year = "2009",
month = mar,
doi = "10.1016/j.jpainsymman.2008.03.014",
language = "English (US)",
volume = "37",
pages = "387--394",
journal = "Journal of Pain and Symptom Management",
issn = "0885-3924",
publisher = "Elsevier Inc.",
number = "3",
}