| The Greater Washington Partnership for Palliative and End-of-Life Care |
Newsletter
| The National Palliative Care Registry by: Lena Aburdene, GWP Staff Writer |
The Greater Washington
Partnership for Palliative
and End-of-Life Care:
Programs and Activities:
Resources and
Information:
Get involved:
Contact the Partnership:
Partnership for Palliative
and End-of-Life Care:
Programs and Activities:
Resources and
Information:
Get involved:
Contact the Partnership:
The National Palliative Care Registry, created by the CAPC (Center to Advance
Palliative Care) and the NPCRC (National Palliative Care Research Center) is a
registry that gives palliative care programs a premium listing in the Provider Directory
at www.getpalliativecare.org. The National Palliative Care website states that the
Registry was created to guide local palliative care leaders in the development and
sustainability of their programs, to help standardize structures and processes of care,
and to demonstrate the reach and impact of palliative care in the nation’s hospitals
and beyond.
A premium listing is different than simply having your program listed in the Provider
Directory because premium listings are highlighted and contain more information than
regular listings. If you register your program at the beginning of each calendar year, it
will refresh your premium listing in the provider directory. The information included in
the National Palliative Care Registry provides the program’s address, phone numbers,
a website and the eligible ages that the program provides care for.
The Registry also provides other services for palliative care programs, such as,
inclusion in the CAPC and NPCRC prevalence studies, tracking your program’s
structures and processes of care, year after year, to guide the development and
sustainability of your program, and generating in-depth customized reports comparing
your program to your peers’ through Palliative Care COMPARE (available in 2010).
When COMPARE is released, palliative care programs will be able to compare their
services to others in the area and throughout the country.
In its efforts to find out more about the Registry, The Greater Washington Partnership
for Palliative and End-of-Life Care spoke with Christine Butler, the Coordinator of
Palliative Care services at Sibley Hospital. Sibley’s palliative care program is
registered in the National Palliative Care Registry and Butler believes that being in the
registry is important for palliative care programs: “The idea of the Registry …helps
justify what we do in a myriad of ways…demonstrating the hard numbers and
accountability to demonstrate the benefits of palliative care in our country and to
ensure that the field continues to thrive.” Butler also thinks that everyone should try to
register their programs to keep track of data as much as possible. Sibley wants to
contribute to data collection in order to continue to enhance the field.
The Registry also seems to be beneficial to the consumer because it provides more
complete demographic information and provides information on the eligibility of the
patient depending on their age (some programs do not offer pediatric palliative care).
Jessica Dietrich, Director of Research to the Center to Advance Palliative Care
explains that entries in the Registry are self-reported but should still be accurate: “All
data entered to the Registry are by self-report. There are logic and numeric validation
checks built into the survey that prevent erroneous information from being entered.
Programs are not motivated to misrepresent themselves, since all data are kept
confidential. Comparative reports, when these become available, will only reveal the
data of peer hospitals in aggregate.”
To be eligible to participate in the Registry, your program must provide non-hospice
palliative care to hospital inpatients of any hospital listed by the American Hospital
Association (AHA). Registering your program in the National Palliative Care Registry is
free. You will be asked to provide the basic contact information of your hospital and
palliative care program in addition to answering a series of questions about key
program structures and processes of care (i.e. members of your team, hours of
availability, etc.). It should also be noted that already having your program listed in
the Provider Directory is different than appearing in the National Palliative Care
Registry. Your program will need to register with the NPCR separately in order to have
a premium listing. To learn more about the registry or to sign up, please visit the GWP
website at www.gwpartnership.org.
Palliative Care) and the NPCRC (National Palliative Care Research Center) is a
registry that gives palliative care programs a premium listing in the Provider Directory
at www.getpalliativecare.org. The National Palliative Care website states that the
Registry was created to guide local palliative care leaders in the development and
sustainability of their programs, to help standardize structures and processes of care,
and to demonstrate the reach and impact of palliative care in the nation’s hospitals
and beyond.
A premium listing is different than simply having your program listed in the Provider
Directory because premium listings are highlighted and contain more information than
regular listings. If you register your program at the beginning of each calendar year, it
will refresh your premium listing in the provider directory. The information included in
the National Palliative Care Registry provides the program’s address, phone numbers,
a website and the eligible ages that the program provides care for.
The Registry also provides other services for palliative care programs, such as,
inclusion in the CAPC and NPCRC prevalence studies, tracking your program’s
structures and processes of care, year after year, to guide the development and
sustainability of your program, and generating in-depth customized reports comparing
your program to your peers’ through Palliative Care COMPARE (available in 2010).
When COMPARE is released, palliative care programs will be able to compare their
services to others in the area and throughout the country.
In its efforts to find out more about the Registry, The Greater Washington Partnership
for Palliative and End-of-Life Care spoke with Christine Butler, the Coordinator of
Palliative Care services at Sibley Hospital. Sibley’s palliative care program is
registered in the National Palliative Care Registry and Butler believes that being in the
registry is important for palliative care programs: “The idea of the Registry …helps
justify what we do in a myriad of ways…demonstrating the hard numbers and
accountability to demonstrate the benefits of palliative care in our country and to
ensure that the field continues to thrive.” Butler also thinks that everyone should try to
register their programs to keep track of data as much as possible. Sibley wants to
contribute to data collection in order to continue to enhance the field.
The Registry also seems to be beneficial to the consumer because it provides more
complete demographic information and provides information on the eligibility of the
patient depending on their age (some programs do not offer pediatric palliative care).
Jessica Dietrich, Director of Research to the Center to Advance Palliative Care
explains that entries in the Registry are self-reported but should still be accurate: “All
data entered to the Registry are by self-report. There are logic and numeric validation
checks built into the survey that prevent erroneous information from being entered.
Programs are not motivated to misrepresent themselves, since all data are kept
confidential. Comparative reports, when these become available, will only reveal the
data of peer hospitals in aggregate.”
To be eligible to participate in the Registry, your program must provide non-hospice
palliative care to hospital inpatients of any hospital listed by the American Hospital
Association (AHA). Registering your program in the National Palliative Care Registry is
free. You will be asked to provide the basic contact information of your hospital and
palliative care program in addition to answering a series of questions about key
program structures and processes of care (i.e. members of your team, hours of
availability, etc.). It should also be noted that already having your program listed in
the Provider Directory is different than appearing in the National Palliative Care
Registry. Your program will need to register with the NPCR separately in order to have
a premium listing. To learn more about the registry or to sign up, please visit the GWP
website at www.gwpartnership.org.