About PC-HEART
Executive Summary
The Palliative Care – Heart Failure Education And Research Trials (PC-HEART) Collaborative is a research network formed in 2003 as an outgrowth of the consensus conference on Palliative and Supportive Care in Advanced Heart Failure.
The collaborative includes senior researchers from leading academic medical centers with active Heart Failure research and treatment programs, many of which have established Palliative Care programs. It is a major outreach effort of Patient-centered Education and Research, Inc., a 501(c)(3) non-profit organization based in Salt Lake City.
PC-HEART has been funded in part by a grant from the Robert Wood Johnson Foundation to develop an ongoing structure that permits development and initiation of education and multi-center clinical research efforts to understand how best to manage symptoms and meet the needs of patients with advanced heart failure and their families. PC-HEART has also received much-appreciated funding from other important organizations.
PC-HEART has an ambitious research agenda which participating sites can join. PC-HEART will also be a source through which sites can contribute patients to projects developed by individual investigators.
Because no one center cares for large enough numbers of patients with advanced heart failure to study palliative and supportive care in advanced heart failure, the PC-HEART collaborative uniquely fulfills a key need in the effort to understand and optimize care for heart failure.
See in particular our publications.
Patient-Centered Education and Research, Inc., PC-HEART’s parent organization, was formed in May 2003 as a non-profit corporation to conduct studies to improve patient-centered care. Patient-centered care focuses on understanding patient preferences and manage symptoms to the level of comfort desired. It attempts to reduce the burden of illness on the patient and their family.
Contributions to Patient-centered Education and Research, Inc. are tax-deductible, in accordance with Section 501(c)(3) of the Internal Revenue Code of 1986.
We have a special internal working group called Hospice-PC Clinicians. If you’re interested in joining this group, register at our site and then email Sarah Goodlin about your interest so she can admit you.
Additional Information
Review the 17 pages in these main topics or browse the topics listing.
New Content
Select an interval to review new public content over that interval:
News
Here is PC-HEART news, listed in reverse chronological order. Click on a title to read the item, and click through the pages below to see older items.
"Palliative Care in Congestive Heart Failure" Published in JACC
"Palliative Care in Congestive Heart Failure" Published in JACC
17 September 2009 - 07:48
Permalink
Sarah Goodlin’s comprehensive review “Palliative Care in Congestive Heart Failure” has been published in the Journal of the American College of Cardiology.
“I think that few articles have the potential to do as much good as this outstanding summary of this difficult subject,” commented John Coyle, MD, FACC, Clinical Professor of Medicine at the University of Oklahoma Health Sciences Center, Tulsa.
The article can be accessed online here.
New PC-HEART Site is Up and Running!
New PC-HEART Site is Up and Running!
21 September 2008 - 08:52
Permalink
Welcome to the new PC-HEART web site! We’ve rebuilt the entire system using the latest technologies and have moved to a new hosting facility. We hope that you find the site to work better and more reliably.
You will need to reset your password to access the site. Please see this detailed explanation for more information about why and how to do this.
We apologize for the inconvenience this imposes, but long-term the PC-HEART site will greatly benefit from this transition.
Please email us with any problems. Thank you!
New PC-HEART Site Arrives This Sunday 21 September
New PC-HEART Site Arrives This Sunday 21 September
18 September 2008 - 19:55
Permalink
This weekend we’re moving the PC-HEART web site to a new system and web hosting setting. Re-engineered from the ground up, our new technologies should provide some significant benefits and a better user interface. The move will cause two important points of disruption, however:
- There will be an interruption in access to the site for some number of hours beginning at 0800 PDT and lasting until the Internet has caught up to our new IP address.
- All users will need to redo their password.
Please review this full explanation of how this can be easily accomplished.
The new site is based on cutting-edge technologies (Ruby on Rails) that are much more robust and easily-maintained than our old system, which had grown rather long in the tooth after nearly seven years of service. Most of the enhancements aren’t visible to regular users, and in fact we’ve tried to keep much of the look&feel the same since people have told us they were used to it and didn’t want a lot of change. However, users with administrative roles at the site will find themselves considerably better empowered.
We’ve also moved to a new hosting setting that should provide more reliable and faster performance. We’ll closely monitor this to see if in fact this results.
We hope that you will bear with us during this transition. Please let us know how things go, particularly if you have any problems. We will make sure to help you through the change.
ISP infrastructure Revision Completed
ISP infrastructure Revision Completed
12 May 2008 - 11:29
Permalink
Update: Our conversion to a new fiber-optic network is now complete. You should see some improvement in operations. We apologize again for any inconvenience during the change-over.
Support PC-HEART Through an Online Donation!
Support PC-HEART Through an Online Donation!
29 December 2007 - 07:56
Permalink
PC-HEART is a nonprofit organization that needs financial support to continue its important activities. Any amount of support will be helpful. You can donate online here. Please help us with our work! You can also contact Sarah Goodlin, Director of PC-HEART, for more information or if you are interested in helping us accomplish our work in any way.
Ethical Issues in Care for Persons with Advanced Heart Failure
Ethical Issues in Care for Persons with Advanced Heart Failure
17 March 2006 - 14:20
Permalink
PC-HEART is pleased to sponsor the upcoming conference Ethical Issues in Care for Persons with Advanced Heart Failure April 17-8, 2006, at the St. Regis Hotel in Washington DC. See this article for detailed information and registration form.
The conference aims to catalyze action by health care leaders and set an agenda to address:
We hope that you join us in this important event!
Call for participants in PAIN-HF Study
Call for participants in PAIN-HF Study
29 December 2005 - 16:07
Permalink
The PAIN-HF Study is now recruiting clinical sites to participate in the study.
Details of the Call for participating sites are available by contacting Sarah Goodlin, or Sue Wingate, or via the PC-HEART investigator’s group (you must be a member of this group first).
PAIN-HF study
PAIN-HF study
28 November 2005 - 09:44
Permalink
Heart failure is known to cause shortness of breath and fatigue, yet at least half of persons with heart failure also report the presence of pain. The cause of pain for these persons is not clear. A new study “PAIN-HF” (Pain Assessment, Incidence & Nature in Heart Failure) to be conducted through the PC-HEART collaborative will identify the prevalence of pain, its location, severity and impact on activities and the possible causes of pain in persons living with heart failure.
The study will also try to understand relationships between other problems and pain, as well as what treatments are given to reduce pain.
“This is an important step in helping health care providers better manage pain and related problems in persons with heart failure,” says the study’s lead investigator, Dr. Sarah Goodlin. “We know that drugs commonly used to treat arthritis and other causes of pain are contraindicated in heart failure patients because they impact kidney function, worsen heart failure and result in hospitalization. We don’t know whether patients are provided other treatment, or which treatments are most effective for their pain.”
Other possible causes of pain have not been explored in persons with heart failure. These include the possibility that pain results from swelling in the legs and other parts of the body, or that pain is perceived as a component of other symptoms associated with heart failure, such as shortness of breath, fatigue, depression or anxiety.
The primary goal of PAIN-HF is to identify the prevalence of pain, its nature and location and relation to other symptom distress in persons with advanced heart failure. Information will be gathered through examinations and surveys of patients with advanced heart failure in community outpatient clinics and hospice care sites who are members of PC-HEART.
PAIN-HF Principal investigator is Goodlin; Dr. Sue Wingate is co-investigator. Steering Committee members are Susan J. Bennett, DNS, RN, Professor, Indiana University School of Nursing, Porter Storey MD, Executive Vice President American Academy of Hospice and Palliative Medicine and John Teerlink MD, Assoc. Professor, University of California, San Francisco School of Medicine and the San Francisco Veterans Administration Medical Center.
The study is funded by The Mayday Fund, established in 1992 to further Shirley Steinman Katzenbach’s commitment to social and medical causes. The Mayday Trustees set a goal of closing the gap between a wealth of information about the treatment of pain and the implementation of this knowledge. Over the last ten years, Mayday has supported many different projects, among them, surveys of public attitudes to pain and its treatment, role model and documentation programs, assistance to public and professional advocacy groups, and clinical and academic research. This project addresses the Trustees wish to support projects that result in clinical interventions to reduce the toll of physical pain. Christina Spellman, executive director of the Mayday Fund affirms. “All at Mayday are excited about the potential of this project to document the extent and prevalence of undertreated pain as a first step towards designing a better system of care for those with heart failure who are suffering.”
Clinical Trials / Clinical Research Expo at Medinfo
Clinical Trials / Clinical Research Expo at Medinfo
12 August 2004 - 10:09
Permalink
The Epimetrics Group will showcase the PC-HEART web site and its collaborative tools for academic research networks at the Clinical Trials / Clinical Research Expo at medInfo 2004. This session is sponsored by the AMIA Clinical Trials Working Group and will include a wide range of developers and users:
The Expo is scheduled for Thursday 9 September from 7:30PM to 10:00PM in Yosemite A/B of the Hilton San Francisco.
Upgraded Server Now Functioning
Upgraded Server Now Functioning
01 August 2004 - 12:34
Permalink
After suffering a hard drive crash a week ago and hobbling along on a backup server in the interim, we’re now back in business with an upgraded server box. We think that all functions are running fine and that you should notice substantially improved performance. Please let us know if you encounter any problems, errors or other issues. Thanks!