Accelerating Access to Palliative Care Data Through Multisite Collaboration
Providing researchers and clinicians access to a national repository of outcomes can greatly accelerate the pace at which knowledge is acquired and put into practice. It also can speed up the time it takes a relatively young field like palliative medicine to come into its own and influence the delivery of health care.
This is the primary focus of the Palliative Care Research Cooperative Group (PCRC). Established just 4 years ago, the national network of researchers and frontline clinicians continues to grow steadily in size and influence within the palliative care community as it seeks to advance the science of palliative care and end-of-life research through rigorous, multisite, evidence-based research.
The Research Network’s Recent Developments
- As of July 2014, PCRC had 106 members representing 53 research sites in the United States, marking a more than fourfold increase in membership since the cooperative group was formed in 2010.
- PCRC recently completed a widely referenced randomized clinical trial that found that discontinuing statins in patients with advanced illnesses resulted in improved overall quality of life, lower costs, and no increased deaths. Moreover, this multisite study of 381 palliative care patients found that those who stopped taking statins appeared to live slightly longer, though this was not statistically significant.
- In coming weeks, the National Institute of Nursing Research (NINR) will announce grants for approximately five new studies to be conducted within PCRC. Since January 2011, the NINR has funded the infrastructure development of PCRC with program project grants. Most recently, in September 2013, NINR provided a continuation grant that is helping PCRC expand its membership and organizational structure.
Together, these developments signal a shift in how research is conceptualized and conducted within the field of hospice and palliative medicine, say PCRC principal investigators.
“The success of PCRC is an exciting development for the field of hospice and palliative care,” says Jean Kutner, MD MSPH FAAHPM, professor of medicine at the University of Colorado, chief medical officer at the University of Colorado Hospital, and PCRC cochair. “It shows the field has matured to the point where palliative care investigators are willing to think beyond their own research to advance the field as a whole. We couldn’t have done this 10 years ago, [but today] there are investigators interested in and willing to engage in this type of research. It says a lot about our field and where we’ve come.”
“With this growing interest in palliative care research, PCRC is committed to equipping investigators with the tools to be successful,” says Christine Ritchie, MD MSPH FAAHPM FACP, professor of medicine at the University of California–San Francisco. Through the funding of pilot projects and provision of expert methodological consultation, PCRC will support the advancement and maturation of the palliative care research community. In collaboration with the National Palliative Care Research Center, PCRC also will enact in-person and online research training for investigators.
PCRC’s Purpose and Direction
The cooperative group was formed to create a research network focused on the needs of the palliative care field, specifically the needs of patients and families requiring palliative care. “Its purpose is to provide a venue and infrastructure for efficient conduct of high‐quality palliative care research that will generate the evidence to help all of us provide better care for our patients and families,” Dr. Kutner says.
The multidisciplinary research group comprises nurses, physicians, social workers, statisticians, health economists, health policy scientists, and others—a diversity that enables the group to consider all types of research, from randomized controlled trials and qualitative research to retrospective and prospective chart reviews.
Likewise, PCRC sites are diverse in both type and patient population. The variety includes academic and community settings, hospice settings, some sites with links to skilled nursing facilities, and patients differing in racial and ethnic backgrounds and type of illness. Research teams at sites also have diverse methodological experience.
“The idea behind the cooperative group is to bring together the capabilities of multiple sites and populations and to equip the cooperative group with an infrastructure that is as efficient and agile as possible,” says Amy P. Abernethy, MD PhD FACP FAAHPM, professor of medicine at Duke University and PCRC cochair. “How do we get better and more efficient at conducting research that matters and delivering those results to patients and doctors?”
The answer lies in the group’s two main core commitments: conducting research that is meaningful to patients and families and generating evidence needed to improve care at the bedside. Efficiency is vitally important, Dr. Abernethy stresses, because palliative care patients cannot wait for care. “It can’t take 17 years to go from an idea to an answer because the patients we care for are, en masse, sick now and need help now,” she says.
Dr. Abernethy further notes that although research networks historically have focused on conducting research rather than implementing research findings, PCRC is committed to “accelerating both sides of that equation.”
To meet this objective, PCRC has been quick to disseminate findings of the statin trial to the press and at conference presentations. Drs. Abernethy and Kutner recently presented abstracts about the safety of discontinuing statins at meetings of the European Association for Palliative Care and the American Society of Clinical Oncology.
For now, the study clearly demonstrates the efficiency with which academic and community-based sites can work together to conduct research on a “very vulnerable and often cognitively impaired patient population,” says Janet Bull, MD FAAHPM, chief medical officer, Four Seasons Compassion for Life, and a member of the PCRC steering and membership committees. She notes that the entire trial, from writing the protocol to conducting the study to disseminating the results to the public, was done in slightly more than 3 years—a relatively short period of time.
Overall, the statin study will serve as a platform or demonstration model for future studies in polypharmacy and optimal medication management. Based upon a national survey of AAHPM clinicians, the PCRC is considering studying other medications, including bisphosphonates, cholinesterase inhibitors, calcium, and antihypertensives.
“Eventually the body of research will help answer questions surrounding medicine simplification in the palliative care setting,” Dr. Abernethy says.
PCRC research is not limited only to drugs or prospective clinical trials. Important areas for study include caregiver distress, psychosocial concerns, and spirituality. PCRC is equipped for many methodologies, including qualitative research, surveys, and quality improvement.
PCRC and Measuring What Matters (MWM)
The work of the PCRC complements the goal of MWM, a consensus project of AAHPM and the Hospice and Palliative Nurses Association that aims to measure healthcare quality by identifying a portfolio of performance measures that cut across all hospice and palliative care programs.
“PCRC is intentionally collecting data points that allow us to start to understand how we’re doing on the quality measures coming out of the MWM campaign—and how this affects the populations involved in the palliative care research,” states Dr. Abernethy. “The kinds of data we’re collecting directly connect to MWM and to the palliative care community as a whole, and not just to the study in front of us,” she says.
Dr. Kutner agrees that PCRC and MWM share data and measures related to quality. “We have ongoing and open discussion to make sure that we are as congruent as possible,” she says. Several AAHPM members serve on both MWM and PCRC committees.
Further joining the two, the Quality Data Collection Tool, a palliative care registry developed at the Duke Cancer Institute that includes MWM measures, will be tested by the PCRC network.
Even as they remain mindful of managing the network’s growth, the PCRC principal investigators strongly encourage AAHPM members to apply for PCRC membership online.
“As a relatively new research group, we’re still practicing how to scale and work together,” Dr. Abernethy says. There are many benefits of PCRC membership—including access to mentors, educational programs, and research opportunities—but it is not a club, she says. Rather, it is national resource for all researchers, PCRC members and nonmembers alike.
“The purpose of the cooperative group is to be inclusive,” she says. “It’s really about organizations and people who are committed to doing research together and then figuring out how to make it work.”
Dr. Kutner adds that the group will continue to learn as PCRC evolves, grows, and gains additional experience. “We are always seeking feedback and measuring our own performance against our own expectations. It is a fluid process,” she says.
- Established in 2010, PCRC creates a network for academic community palliative care providers to engage in research opportunities.
- In January 2010, a PCRC kick-off retreat was held in Denver, CO. Twenty-five participants—representing a broad range of academic medicine institutions, community-based hospice and palliative care organizations, federal agencies, and public and private institutions—met to define core principles.
- PCRC is the first research cooperative in the United States focused specifically on advancing the science of palliative and end-of-life research through rigorous, multisite, and evidence-based research.
- The cooperative group format was chosen because it offers a means to complete, in a timely way, complex studies that otherwise would not or could not be undertaken. It encourages the use of common outcome measures, enhances recruitment, and allows for study results to be generalized.
- PCRC membership is defined at the individual level. As of July 2014, there were 106 members representing 53 sites.
- Benefits of membership include having access to and collaborating with other palliative and end-of-life care researchers, the ability to conduct large multisite studies, the ability to mentor or to be mentored, and access to a growing repository of research data.
- PCRC is currently in the process of developing an external advisory board to provide direction in areas such as funding, key research initiatives, and quality improvement.