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
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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.
PC-HEART Publishes Consensus Statement On Palliative and Supportive Care in Advanced H...
PC-HEART Publishes Consensus Statement On Palliative and Supportive Care in Advanced Heart Failure
10 June 2004 - 09:57
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The PC-HEART team has published a consensus statement on standards for care in advanced heart failure in the Journal of Cardiac Failure, Volume 10, No. 3, 2004. The article can be accessed via ScienceDirect’s subscription-based service. We provide the abstract here.
Background: A consensus conference was convened to define the current state and important gaps in knowledge and needed research on “Palliative and Supportive Care in Advanced Heart Failure.”
Evidence: Evidence was drawn from expert opinion and from extensive review of the medical literature, evidence-based guidelines, and reviews.
Conclusions: The conference identified gaps in current knowledge, practice, and research relating to prognostication, symptom management, and supportive care for advanced heart failure (HF). Specific conclusions include:
- Although supportive care should be integrated throughout treatment of patients
with advanced HF, data are needed to understand how to best decrease physical and psychosocial burdens of advanced HF and to meet patient and family needs. - Prognostication in advanced HF is difficult and
data are needed to understand which patients will benefit from which interventions and how best to counsel patients with advanced HF. - Research is needed to identify which interventions improve quality of life
and best achieve the outcomes desired by patients and family members. - Care should be coordinated between sites of care, and barriers to evidence-based practice must be addressed programmatically.
- More research is needed to identify the content and technique of communicating prognosis and treatment options with patients with advanced HF; physicians caring for patients with advanced HF must develop skills to better integrate the patient’s preferences into the goals of care.
New Hospice-PC Clinicians Group
New Hospice-PC Clinicians Group
22 January 2004 - 13:55
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We’ve now opened a new collaborative area in our web site for clinicians working in hospice and palliative-care settings. This is where you can discuss important issues, get involved in projects, and help shape our understandings of what constitutes optimal clinical care in advanced heart failure from the perspective of real experience.
To join this group, you need to register at our site (which is easy and free; see this FAQ for more information). Then you can request to join the group. We may email you about who you are, what you do, and what your interests are to make sure that the group’s objectives meet yours. If so, we’ll add you to the group and then you can join in the activities there.
We’re excited about the potential for breaking through to new ideas and practical insights in this group!
Instructions for Getting Involved at PC-HEART
Instructions for Getting Involved at PC-HEART
05 January 2004 - 15:21
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We’d like to welcome all our current colleagues to our PC-HEART web site! We also welcome all you potential new members! To make it easier for you to use our site, we’ve posted some information you should consult on the Site Registration FAQ and the Joining Us page.
Please read these through, email us with questions or problems, and get involved! Welcome!
PC-HEART Teams with The Epimetrics Group to Deploy Collaborative Web Site
PC-HEART Teams with The Epimetrics Group to Deploy Collaborative Web Site
15 December 2003 - 16:55
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PC-HEART, a heart failure research network of leading clinical investigators, has engaged The Epimetrics Group to provide Internet tools to conduct its research agenda and communicate with the public.
The Epimetrics Group is a San Francisco-based healthcare IT R&D firm that has developed a suite of communication, manuscript management, and data collection tools for clinical researchers. These tools deploy the public portions of the PC-HEART site that you are currently viewing as well as a robust set of facilities for project management in protected, limited-access areas for the PC-HEART investigators.
For those in the realm of Palliative Medicine, Hospice, Cardiology and Heart Failure, Geriatrics, Internal Medicine, etc. please begin to use this forum and others on the AAHPM website to encourage collaboration of ideas for next years workshop series at the AAHPM meeting! Please use this format or contact Dr. Rodney Tucker at rtucker@uab.edu for more dialogue.
We would like to promote a series of workshops, papers, posters, etc. that highlight various areas of advanced heart failure care that will be useful to our colleagues in AAPHM!