LRC Network Web Site

Health Resources Digest April-May 2006 EurasiaHealth Knowledge Network www.eurasiahealth.org ========================================= The Health Resources Digest is distributed free of charge as a service of the EurasiaHealth Knowledge Network/American International Health Alliance (AIHA). If this document is to be re-distributed or posted on another Web site, we request that it be posted in full/without alteration, that credit is given to the EurasiaHealth Knowledge Network as the source of the document, and if possible, a link to www.eurasiahealth.org is included in the credit notice. ============================================================= Palliative Care Resources on the Internet “Palliative Care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” National Cancer Control Programmes: Policies and Managerial Guidelines, 2nd Ed. Geneva: WHO, 2002 “Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patients and family members, helping with decision-making, and providing opportunities for personal growth. Palliative care can be rendered along with life-prolonging treatment or as the main focus of care. “ The National Consensus Project for Quality Palliative Care http://www.nationalconsensusproject.org/WhatIsPC.asp International organizations / projects International Association for Hospice and Palliative Care IAHPC mission is to increase the availability and access to high quality hospice and palliative care for patients and families throughout the world: this is done by promoting communication, facilitating and providing education, and providing information for patients, professionals, health care providers and policy makers around the world. The web-site contains information about its programs, conferences, full-text publications (including Hospice and Palliative Care Manual), training opportunities, educational resources, treatment guidelines and position statements, assessment and research tools. URL: http://healthweb.org/cnt_rjb.cfm?siteid=55654 International Observatory on End of Life Care The aim of this organization is to provide research evidence to impact the development of hospice and palliative care. The “Global Development” section of the web-site contains analyses of the state of palliative care in over 60 countries of the world. Under “Historical Analysis”, you will find examples of a range of projects on the history of hospice and palliative care in different settings. “Ethics” section contains information and links to other web-based resources on that topic. You can also find information about educational opportunities, publications, patient and carer experiences, and other resources. URL: http://www.eolc-observatory.net/ African Palliative Care Association The African Palliative Care Association was established in 2005, and it seeks to promote and support affordable and culturally appropriate quality care across Africa. To achieve this goal, they form collaborative partnerships with new and established national palliative care associations and provide a technical assistance program that includes advocacy and policy influencing, education and training, standards of care, and monitoring, evaluation and research. URL: http://www.apca.co.ug/ European Association for Palliative Care The European Association for Palliative Care (EAPC) was established in 1988, and by 2005 it counted individual members in 40 countries, with collective members from 32 National Associations in 21 European countries, representing a movement of some 50.000 health care workers and volunteers in palliative care. Its main aims are to: promote the implementation of existing knowledge; train those who at any level are involved with the care of patients and families affected by incurable and advanced disease; and promote study and research; bring together those who study and practice the disciplines involved in the care of patients and families affected by advanced disease (doctors, nurses, social workers, psychologists and volunteers); promote and sponsor publications or periodicals concerning palliative care; unify national palliative care organizations and establish an international network for the exchange of information and expertise; address the ethical problems associated with the care of terminally ill patients. On the web-site you can find news, projects, publications, information about conferences, and member organizations. URL: http://www.eapcnet.org/ EAPC-East This web-site is a part of the European Association for Palliative Care - EAPC, and started as part of a project to support the development of palliative care in Eastern Europe. It offers information and a possibility to share and exchange knowledge through the Forum. You can also receive the monthly e-mail newsletter concerning palliative care and issues of interest from and about the Central and Eastern Europe. The major aims of this EAPC project is to improve palliative care and coordinate activities in the Eastern European countries, and build a network of people and organizations interested in, as well as working with, palliative care in Eastern Europe. From this web-site you can download EAPC publications, available in Russian, Croatian, and Hungarian. URL: http://www.eapceast.org/ ECEPT (Eastern and Central Europe Palliative Care Task Force) ECEPT is a newly created international association meant to group palliative care professionals from Eastern and Central Europe, the people who take leading part in the field of caring for the terminally ill. The founded in 2001 Poznan's Palliative Care Resource & Training Center is providing facilities for theoretical and practical training for palliative care professionals from Poland and other countries of the region. The center is also meant to play an important role as a source of information and advice in organization, legal issues and fundraising in palliative and hospice care/cancer pain management; it is also supposed to serve as a means of communication and the exchange of information among local and international palliative care organizations and associations. An on-line newsletter is issued on a regular basis by ECEPT in English. URL: http://www.oncology.am.poznan.pl/ecept/emenu.php National Cancer Control Programmes, World Health Organization (WHO) - Palliative care This web-site offers WHO publications, documents, and abstracts related to cancer pain, terminal illness, and palliative care, and links to other related resources on the Internet. URL: http://www.who.int/cancer/palliative/en/ Cancer Pain Release Cancer Pain Release is the online publication of the World Health Organization dedicated to providing all those concerned with improving pain control in cancer with the latest information on cancer pain and palliative care. Full text of articles published since 1995, and contents of earlier volumes (from 1988) are available there. URL: http://www.whocancerpain.wisc.edu/ Cochrane pain, palliative care and supportive care group: abstracts of the Cochrane reviews The Cochrane reviews are based on the best available information about healthcare interventions. They explore the evidence for and against the effectiveness and appropriateness of treatments (medications, education, etc) in specific circumstances. This site lists titles of systematic reviews carried out by members of the Cochrane Pain, Palliative Care and Supportive Care Group, and includes links to abstracts. New and updated reviews are indicated. Access to full-text reviews is available through HINARI, and through online or CD-ROM subscription. URL: http://www.cochrane.org/reviews/en/topics/85_new.html Gateways/ Resource Collections Bandolier: Palliative and supportive care One in a series of "Bandolier Knowledge Resource Centres" that collate and make available a collection of quality evidence resources relating to medical issues: “Each month PubMed and the Cochrane Library are searched for systematic reviews and meta-analyses published in the recent past. Those that look remotely interesting are read, and where they are both interesting and make sense, they appear in Bandolier, first in the paper version and, after six months, on the web-site. For other web content (such as the specialist resource areas) we search over all times, and where necessary, do systematic reviews ourselves.” This collection focuses on palliative and supportive care and contains articles that have appeared in Bandolier and links to relevant Web resources. URL: http://www.jr2.ox.ac.uk/bandolier/booth/booths/pall.html City of Hope Pain/Palliative Care Resource Center (COHPPRC) The purpose of the COHPPRC is to serve as a clearinghouse to disseminate information and resources that will enable other individuals and institutions to improve the quality of pain management. The COHPPRC is a central source for collecting a variety of materials including pain assessment tools, patient education materials, quality assurance materials, research instruments and other resources. Over 400 materials are available to download on that web-site free of charge. A special section of the site includes a comprehensive list of links to various professional and patient organizations focused on pain management or end-of-life care. URL: http://www.cityofhope.org/prc/ Growth House This is a subject gateway to palliative care and end of life resources on the Internet, aimed at those with a life threatening illness. The site includes topic pages covering a range of subjects, professional forums and mailing lists, and information for professionals, that explains major issues in hospice and home care, palliative care, pain management, grief, death with dignity, and quality improvement. They also provide disease-specific guides for heart failure, end-stage renal disease, and cancer, and overviews of key HIV/AIDS resources. URL: http://www.growthhouse.org/ National Library for Health: Palliative and Supportive Care Specialist library The National Library for Health (NLH) is a library and information service for the National Health Service (NHS UK). The Palliative and Supportive Care Specialist Library is a virtual library providing access to a growing collection of quality evaluated resources and links for health professionals working in the fields of palliative and supportive care. The Specialist Library aims to provide convenient and comprehensive access to the best available evidence in all aspects of palliative and supportive care: symptom management, service provision, populations and settings, death and bereavement, policy, ethics and law, research, education and training. URL: http://www.library.nhs.uk/palliative/Default.aspx Palliative Care Matters Palliative Care Matters is a web-site intended for health-care professionals working in palliative care or related fields. News and information on developments in this field, abstracts of relevant journal articles, titles of books and theses and a moderated discussion forum are available. An important feature of the site allows you, as a registered user, to automatically identify new items that have been added since your last visit. If you also register your profession and home country, several of the pages will show quick menu links to items most likely to interest you. URL: http://www.pallcare.info/ Professional Associations/National Initiatives American Academy of Hospice and Palliative Medicine (AAHPM) The American Academy of Hospice and Palliative Medicine (AAHPM) is an organization of physicians and other medical professionals dedicated to excellence in and advancement of palliative medicine through prevention and relief of patient and family suffering by providing education and clinical practice standards, fostering research, facilitating personal and professional development, and by public policy advocacy. On the web-site you can find information about educational and fellowship programs, publications, resources for physicians, links to related sites. URL: http://www.aahpm.org/ Center to Advance Palliative Care (CAPC) The Center to Advance Palliative Care (CAPC) is dedicated to increasing the availability of quality palliative care services in hospitals and other health care settings for people with life-threatening illnesses, their families, and caregivers. This national initiative provides health care professionals with the tools, training, and technical assistance necessary to start and sustain successful palliative care programs in hospitals and other health care settings. You have to register (enter your e-mail address) to access the Tools Section. URL: http://www.capc.org/ The Initiative for Pediatric Palliative Care (IPPC) The Initiative for Pediatric Palliative Care (IPPC) is both an education and a quality improvement effort, aimed at enhancing family-centered care for children living with life-threatening conditions. IPPC’s comprehensive, interdisciplinary curriculum addresses knowledge, attitudes and skills that health care professionals need in order to better serve children and families. IPPC is a project of the Center for Applied Ethics and Professional Practice (CAEPP), a division of Education Development Center, Inc. (EDC). EDC is a non-profit organization with more than six hundred professional staff, working on three hundred educational projects throughout the United States and in twenty-seven countries. The web-site contains quality improvement tools, training curriculum, and a directory of collaborating hospitals. URL: http://www.ippcweb.org/index.asp Hospice and Palliative Nurses Association (HPNA) The purpose of the Hospice and Palliative Nurses Association (HPNA) is to exchange information, experiences, and ideas; to promote understanding of the specialties of hospice and palliative nursing; and to study and promote hospice and palliative nursing research. The web-site includes information about the organization, its membership and events, educational services, publications, and patient/family education materials. URL: http://www.hpna.org/ Pain and Its Treatment (in Russian) The web-site “Pain and Its Treatment” has been established by the Interregional Siberian Anti-Pain Fund, a Novosibirsk-based non-profit NGO, with support from the International Association for the Study of Pain (IASP). The web-site contains publications, information on conferences and news about pain management, ethics and palliative care. URL: http://www.painstudy.ru/ Promoting Excellence in End-of-Life Care Promoting Excellence is a national program of the Robert Wood Johnson Foundation. The Promoting Excellence in End-of-Life Care web-site is dedicated to showcase models to improve access and quality in the palliative care, hospice and end-of-life health care. The web-site contains: clinical care, educational, organizational, and evaluation tools; publications; links to other web-based resources; demonstration projects; national workgroups; reports and recommendations. URL: http://www.promotingexcellence.org/ Foundation for Palliative Care and Rehabilitation (in Russian) Established in 1995, the Foundation focuses on establishing charitable societies, associations, and funds; organization of congresses, conferences, workshops, and schools; education and training of healthcare providers; publishing activities. The web-site contains on-line textbooks on palliative care, information about conferences and training opportunities. URL: http://www.palmedfund.ru Journals BMC Palliative Care “BMC Palliative Care publishes original research articles in the clinical, scientific, ethical and policy issues, local and international, regarding all aspects of hospice and palliative care for the dying and for those with profound suffering related to chronic illness.” Free full-text of all articles. URL: http://www.biomedcentral.com/bmcpalliatcare/ bmj.com collected resources : palliative medicine Collected resources on palliative medicine from the online British Medical Journal. BMJ collections list the most recent BMJ articles (usually with links to the full-text) in a subject area or specialty, and also links to relevant books and journals from the BMJ Publishing Group. URL: http://bmj.bmjjournals.com/cgi/collection/palliative_medicine Innovations in End-of-Life Care All 28 past thematic issues, from January 1999 through September 2003, are now archived at this site and are available to read, download, and print for free. This international, online journal features peer-reviewed promising practices in end-of-life care, useful tools, selected bibliographies, and other resources. URL: http://www2.edc.org/lastacts/ Journal of pain and symptom management The Journal of Pain and Symptom Management covers all aspects of pain management and palliative care. It is aimed at both clinicians and researchers working in pain management, palliative care and hospice care, including oncologists, anesthesiologists, neurologists, pharmacologists, nurses, therapists, psychologists and psychiatrists. Available through HINARI. URL: http://www.sciencedirect.com/science/journal/08853924 Resources for Patients/Families Caring Connections Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer engagement initiative to improve care at the end of life. It provides a variety of free resources on topics including: advance care planning, caregiving, pain, financial issues, hospice and palliative care, and grief and loss. It provides information to help people make decisions about end-of-life care and services before a crisis, and spearheads a national consumer engagement campaign called It's About How You LIVE. It’s About How You LIVE is a national consumer engagement campaign to empower people to make informed decisions about end-of-life care and services. The goal of this campaign is to provide a unified message across the country that motivates people to take action to improve end-of-life care for themselves, their loved ones, and their communities. URL: http://www.caringinfo.org/ Hospice Net Hospice Net provides information and support to patients and families facing life-threatening illnesses. The web-site includes the following sections: Services, Patients, Children, Caregivers, Bereavement. URL: http://www.hospicenet.org/ Education/Training resources Cancer pain management e learning This site is aimed at all health care practitioners involved in pain management for patients with cancer, including specialist nurses, junior doctors, general practitioners, GP registrars and senior medical students. The site consists of modular tutorials, self-assessment with feedback, and links for further reading and research. After working through all the material on the site, users should be able to: take a clear and detailed pain history; apply the principles of the WHO approach when dealing with cancer pain; make appropriate choices when prescribing and reviewing opiates for pain management; recognize appropriate drugs for use with a syringe driver. URL: http://www.cancerpain.org.uk/ The Center for Palliative Care Education The Center for Palliative Care Education is an educational resource center and training program. Its mission is to improve palliative care for people with HIV/AIDS by increasing the knowledge, skills, and comfort level of clinicians to provide this care. The Center for Palliative Care Education is a project of the University of Washington's Northwest AIDS Education and Training Center. They develop training modules and accompanying materials on HIV/AIDS palliative care. Although focused on HIV, the materials are designed to be applicable to other life-threatening illnesses. Each module consists of interactive lectures in the form of Power Point presentations, slide notes, skills building and experiential exercises, learning objectives, sample agendas, evaluation forms, suggested handouts, and resource lists URL: http://depts.washington.edu/pallcare/about/index.shtml Current Learning in Palliative Care The Current Learning in Palliative Care Index (CLIP Index) is a set of free 15 minute online tutorials aimed at providing health care professionals, carers and teams with the knowledge and skills needed in their daily work. The tutorials comprise a series of work sheets set at introductory, intermediate and advanced levels, and cover: an introduction to palliative care, helping the patient with pain, helping patients with symptoms other than pain, moving the ill patient, psychological needs, helping the patient with reduced hydration and nutrition, procedures in palliative care, helping people with communication difficulties, the last hours and days, and bereavement. URL: http://www.helpthehospices.org.uk/elearning/index.htm End of Life/Palliative Education Resource Center (EPERC) This site is intended to support individuals involved in the design, implementation, and/or evaluation of End-of-Life/Palliative education for physicians, nurses and other health care professionals. Major content areas in EOL/Palliative education include: pain, non-pain symptoms, communications skills, ethics, terminal care, and clinical interventions used near the end-of-life. Fast Facts are peer reviewed, one-page outlines of key information on important end-of-life clinical topics for end-of-life educators and clinicians. A "Starter Kit" is a collection of pre-selected articles, books, teaching materials and Web resources that have been assembled for beginners--medical educators who have recently accepted a new teaching role, have been asked to build a curriculum URL: http://www.eperc.mcw.edu/ The EPEC Project: Education on Palliative and End-of-Life Care The EPEC Project, through the Feinberg School of Medicine, Northwestern University, teaches fundamental palliative care skills in communication, ethical decision-making, psychosocial considerations, and symptom management. The complete EPEC Curriculum is available as Online Learning for CME credit (each module for $30). URL: http://www.epec.net/EPEC/webpages/index.cfm Guidelines The National Consensus Project for Quality Palliative Care (NCP) “The purpose of the National Consensus Project for Quality Palliative Care is to promote the implementation of Clinical Practice Guidelines that ensure care of consistent and high quality, and that guide the development and structure of new and existing palliative care services.” The guidelines, developed through consensus of five major United States palliative care organizations, describe core precepts and structures of clinical palliative care programs. URL: http://www.nationalconsensusproject.org/ National Comprehensive Cancer Network Advanced Cancer and Palliative Care Treatment Guidelines for Patients – Version I, December 2003. Work-Up (Evaluation) and Treatment Guidelines: Decision Trees. The National Comprehensive Cancer Network is an alliance of 20 of the world’s leading cancer centers, working together to develop treatment guidelines for most cancers. URL: http://www.nccn.org/patients/patient_gls/_english/_palliative/contents.asp ============================================================= Related EurasiaHealth Knowledge Network links: Palliative Care in HIV Management (GALEN Module No. 13) URL: http://www.eurasiahealth.org/eng/health/resources/81639/ Ensuring Competency in End-of-life Care: Controlling Symptoms URL: http://www.eurasiahealth.org/eng/health/resources/81914/ Sedation in Palliative Care – A Critical Analysis of 7 Years Experience URL: http://www.eurasiahealth.org/eng/health/resources/82064/ Quality end-of-life care: A global perspective URL: http://www.eurasiahealth.org/eng/health/resources/81918/ ============================================================= Health Resources Digest Forthcoming Topics [Provisional] Telemedicine; Critical Appraisal Tools; Electronic Patient Records; Copyright Issues on the Internet; Medical Calculators If you have a suggestion for a Digest topic, or would like to contribute information about Internet resources, then please contact ibra@zadar.net ============================================================= Compiled by Irina Ibraghimova, Coordinator, Medical and Information Resources American International Health Alliance ibra@zadar.net Back issues of the Health Resources Digest are archived at http://www.eurasiahealth.org/eng/misc/publication3/ For More Information... Please contact the EurasiaHealth Knowledge Network: * if you would like to subscribe to EURASIAMEDINFO by e-mail * if you would like more information about the EurasiaHealth Knowledge Network Richard Custer, Research Associate, Information and Communication Technology Programs, American International Health Alliance rcuster@mindspring.com