CRN
Participates in Watershed Palliative Care Meeting
In early February, NCI convened a working meeting in response to the recent Institute of Medicine (IOM) Report, "Improving Palliative Care for Cancer." This meeting was unique in that it brought together groups who are active in palliative care research (such as the Robert Wood Johnson Foundation), associations with an active role in cancer and end-of-life care (American Society of Clinical Oncology, American Association for Cancer Education, National Hospice and Palliative Care Organization, American Cancer Society, Project on Death in America), and organizations that are interested in funding more palliative care research (including NCI, AHRQ, and the National Institute of Nursing Research).
The CRN was the only federally-funded, investigator-initiated research project at the table. The structure and size of the meeting allowed the represented groups to quickly learn about others' capabilities and existing programs in palliative care, and facilitated very productive discussions about priorities and opportunities for future collaboration.
Four Key Areas for Improvement
The meeting focused on four key areas of the IOM report: future funding for palliative care; education and training; clinical research; and dissemination research. NCI is looking at optimal ways to increase funding for the field of palliative care research, including incorporating palliative care programs into the cancer centers programs, establishing "Centers of Excellence," and partnering with community-based organizations or other research entities. There was clear agreement that good programs exist throughout the nations, and that finding ways to leverage and model these programs across other cancer
care groups was an imperative.
The meeting attendees concurred with the IOM recommendation to augment education and training in palliative care, and agreed that three main goals are to change provider
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behavior, improve patients' experiences, and propagate best practices in symptom control and palliation. The curriculum for physicians, nurses and social workers, from medical school to continuing education, needs to be revised to integrate palliative care and symptom management into the entire spectrum of cancer treatment. Partnerships with the American Cancer Society, American Society of Clinical Oncology and medical licensure organizations are critical in order to meet this education goal, and those organizations represented at this meeting solidified their commitment to modifying the cancer education curriculum to incorporate palliative care concepts.
Even with current advances in treatment, more than half of all patients diagnosed of cancer will die of their disease.
- IOM Report, "Improving Palliative Care for Cancer"
Conducting clinical research in palliative care has not been a high priority up to now, because of the complexities of integrating this research into NCI's Cooperative Groups program, the lack of measurement tools, problems with current reimbursement structure, and the low visibility of palliative and end-of-life care, even on public patient-oriented material about cancer (such as the NCI and American Cancer Society web sites). The meeting participants expressed their
commitment to expanding development of an infrastructure for palliative care research within the Cooperative Groups program. Also, both the Cancer Outcomes Measurement Working Group and CanCORS were cited as possible settings to develop measurement tools to assess
outcomes of palliative care research.
Numerous ideas were put forth during the
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working group's discussion of dissemination research and diffusion of best practices in palliative care. There are several extant programs in palliative care research, yet these don't seem to meet the needs of care providers or patients, nor have they "pushed the envelope" in terms of integrating palliation into the larger cancer treatment spectrum. Critical next steps include assessing the needs of both of these audiences, as well as determining ideal communication strategies and channels.
In short, there is much work to be done in this arena. The CRN can potentially serve as a testing ground for pilot studies, needs assessments, and examining differences in patients' and providers' experiences. Meeting participants were enthusiastic about the CRN's burgeoning research portfolio in end-of-life care, including the current Prostate Cancer and End-of-Life study, the Quality End-Stage Treatments and Transitions (QUESTT) renewal project, and the Cancer Patient Experiences Reporting System (CaPERS), a planned CRN R01.
As next steps and new initiatives emerge from this meeting, we look forward to continued involvement of the CRN. We encourage CRN investigators to consider getting involved as the partnerships and collaborations take shape. - Sarah Greene, GHC & Terry Field, Meyers
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