The Cancer Support Community fully endorses the below letter from the Alliance for Quality Psychosocial Cancer Care to the Patient-Centered Outcomes Research Institute (PCORI), providing comments on PCORI Tier 1 Pilot Projects.
The Alliance, formed in 2008, is an informal coalition of professional and advocacy organizations engaged in providing a range of services to cancer patients and survivors, including emotional and social support, and clinical care. The goal of the Alliance is to advance recommendations from the Institute of Medicine report, ”Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.” For more information about the Alliance, visit www.wholecancerpatient.org.
August 31, 2011
On behalf of the Alliance for Quality Psychosocial Cancer Care, we are pleased to offer these comments with regard to the topics of interest for Tier 1 Pilot Projects. The Alliance is a coalition formed in 2008 to implement key recommendations of the 2007 Institute of Medicine report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. The Alliance now has more than thirty-five member organizations representing a diverse cross section of those who share a commitment to integrating psychosocial screening and related services into the standard of quality care for cancer patients and their family members.
As noted in your invitation to comment, Tier 1 pilot projects will be funded by the Patient-Centered Outcomes Research Institute (PCORI) to assist in establishing national priorities for research, support the development of novel methods or the collection of preliminary data that can be used to advance the field of patient-centered outcomes research (PCOR). Our comments relate to item 2 in the list of initial topics for tier 1 pilots projects. This topic is:
Developing, testing, and/or evaluating methods for bringing together patients, caregivers, clinicians and non-traditional partners in all stages of a multi-stakeholder research process, from the generation and prioritization of research questions to the conduct and analysis of a study to dissemination of study results.
To promote successful research for this topic, we strongly encourage PCORI to support the development of infrastructure and capacity building for active partnerships between community-based patient advocacy and service provider groups and research (including academic) institutions. From our perspective, we see a major gap in linking patients to evidence-based, patient-centered care. The gap exists because the research enterprise has not supported the development of partnerships between research-intensive institutions and the people they intend to serve. All too often this results in a disconnect between research, practice and outcomes. Such gaps between scientific (including patient-centered outcomes research) knowledge, and patient prognoses and outcomes may be due to suboptimal engagement by patients, community-based organizations and their communities-at-large. It is crucial to engage such groups at the very beginning of the conversation and devote corresponding resources to these key stakeholders.
We suggest a process similar to the NIH U01 mechanism, or a variation on the theme of ‘Research Project – Cooperative Agreements’. Such a platform will promote the development of culturally sensitive information both ways, between community advocacy and service groups and research institutions, and will help highlight the relevant inputs to consider in studies of comparative effectiveness. Such a mechanism encourages and in fact mandates equal sharing of responsibility as well as equal sharing of budget, making it a sustainable model.
We urge you to consider our recommendation to provide grant mechanisms to develop and enhance partnerships between community-based patient advocacy groups and service providers, and research intensive institutions.
American Psychosocial Oncology Society
Association of Community Cancer Centers
Association of Oncology Social Work
Association of Pediatric Oncology Social Workers
Bear Necessities Pediatric Cancer Foundation
Cancer Legal Resource Center
Cancer Support Community
Center for Communication in Medicine
Dana-Farber Cancer Institute
Lung Cancer Alliance
National Association of Social Workers
Society of Behavioral Medicine
Yale Comprehensive Cancer Center