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i Cancer Web Resources |
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American Association for Cancer Research While this site is more geared towards medical professionals, its list of publications may prove helpful to patients. Perhaps the best-known cancer resource on the Web, the American Cancer Society’s site is host to valuable information for patients, friends, family, survivors, and medical professionals. Their “Interactive Help” section is useful (though it must be remembered that not even the ACS has all information about the latest clinical trials results). Being a Patient (New York Times) The New York Times produced a special series of articles on being a patient, all of which are compiled on their Web site. Article topics include the overabundance of information available to patients, shift changes in hospitals, treatment costs, the fear of being ill, etc. This Web site serves as an online community center for cancer patients, supported by the Cancer Treatment Centers of America and the Cancer Treatment Research Foundation (both of which have their own helpful Web sites). A cancer survivor provides a wealth of information on cancer statistics, treatments, finance, etc. Particularly useful were the sections on “Researching Your Options” and “Clinical Trials and Experimental Treatments.” The latter contains a section on “Getting New Treatments Outside a Clinical Trial” that is well worth reading. The National Cancer Institute (part of the National Institutes of Health) created this site to provide information on cancer news and resources. Cancer Survivors Network (part of the American Cancer Society) The American Cancer Society devotes a separate Web site to cancer survivors. It contains survivors’ personal accounts of their battles with cancer, chat rooms, information on support groups for survivors, and other useful resources. CarePages.com allows patients and their loved ones to create Web sites that enable them to communicate information about their illnesses to friends and family. Family and friends are notified via e-mail of any updates to the Web site, and when they visit, they are able to post messages for the patient. Like CarePages.com, Caringbridge.org is a site allowing patients and their families to create Web sites to help them communicate about their illnesses with loved ones. The Center for Patient Partnerships at the University of Wisconsin-Madison The goal of this center sounds like a line directly from The Patient from Hell: "We are committed to empowering patients as equal partners with health care providers." The group is made up of doctors, researchers, teachers and health policy and management experts, all of whom are committed to patient advocacy, education, and research. They provide advocacy services free of charge to anyone, anywhere with a life-threatening disease. Daily Strength is an online community for people suffering from various ailments. Register to be part of the lymphoma community or one of the numerous other communities -- it's free and will connect you with others with whom you may share stories and advice. Google is a Web search engine and not a cancer Web site per se, but it, too, is a valuable resource for online cancer research. If you perform a search on three or four words relevant to your disease, you are what seems to be an inexhaustible list of Web sites containing those terms. Try different words and combinations—but be prepared to spend days looking into all the leads you’ll get. Some Web sites you encounter using this method will be better than others, and after a while, you should be able to distinguish useful from not quickly. For patients in the Bay Area, Healthcare Liaison is a consulting/advocacy group for patients and their families. It was founded by Joanna Smith, who is a licensed clinical social worker (LCSW) and has 25 years of experience in the healthcare and mental health fields. As mentioned in The Patient from Hell, I believe there is a need for more integrated medical care and centralized patient records. If you are worried that your medical records are not centralized, you may be interested in iHealthRecord. On their Web site, you may enter information about your insurance, emergency contacts, medical conditions, and medications, all free of charge. Your information is always accessible online and can only be accessed with your username and password. It may be useful to your doctors or in case of emergency, as you could authorize them to log on to your or a loved one’s account. International Foundation for Anticancer Drug Discovery The primary goals of IFADD are to streamline the process of drug discovery and to educate the public about promising new drugs in development. It accomplishes these tasks through patient advocacy, public education, and federal and state legislation. It has become well known for its advocacy work with patients with stage IV cancer, helping them to enroll in clinical trials that may prove more effective than other treatment and attempting to provide them with the best care. Jeanne D. Kennedy - Health Services & Nonprofit Consulting After 25 years as Director of Community & Patient Relations at Stanford Hospital, Jeanne Kennedy decided to start her own company to help patients navigate "the system." Visit her Web site to learn about the patient advocacy and other services she offers. The Leukemia & Lymphoma Society The Leukemia & Lymphoma Society is perhaps the best known – and the US’s largest – voluntary health organization focused on funding research on blood cancers, cancer education, and patient services. Their Web site gives valuable information on blood cancers and current trials, as well as support provided for patients and their families. The Lymphoma Research Foundation is the U.S.’s largest voluntary health organization focused on lymphoma. It funds a significant amount of lymphoma research and valuable information for patients and medical professionals. Of particular interest to patients, their families, and their advocates will be the section of the Web site on “Patient Support,” which includes information on treatments, support groups, and financial aid. Mantle Cell Lymphoma Consortium The Mantle Cell Lymphoma Consortium, established by the Lymphoma Research Foundation, represents a group of 75+ scientists studying mantle cell lymphoma. It provides information on scientific advances, information for patients on their disease, a searchable clinical trials database, as well as other useful items. See the "Upcoming Events" link for patient- and professional-oriented sessions on mantle cell lymphoma. National Patient Advocate Foundation To see what sorts of legislative initiatives related to patient advocacy are currently being considered, see this Web site. It does not provide medical advice per se, but it does give an extensive overview of the politicking being carried out in the hopes of passing laws that make life better for patients. If you're encouraged by what you see, consider joining the Advocates Alliance for Action (AAA), which you can do from the NPAF site. The AAA attempts to educated elected officials on patient advocate-related legislation, to inform patients of services offered by the Patient Advocate Foundation, and to raise money for lobbying efforts. OncoLink (from the University of Pennsylvania) This site gives information on everything from types of cancer to clinical trials to coping with cancer. Check out the OncoLink library for a diversity of reading on cancer. Patient Advocacy Resources (from the University of Connecticut Health Center) The University of Connecticut Health Center library provides a helpful list of patient advocacy books and Web sites. If you need a case manager or attorney to act as liaison between you and your insurance agency, employer, and/or creditors, see the services offered by the Patient Advocate Foundation and detailed on this Web site. Patient Advocate Liaison Services This is the Web site for a professional patient advocate based in Tucson, AZ. It gives a good overview of what to expect from a patient advocate. It is our hope that such advocates and Web sites will proliferate in the future. This site represents a collaboration of voluntary health organizations, scholarly and medical publishers, medical societies, and information professionals. Its goal is to provide patients and caregivers with up-to-date information on and interpretation of the latest scientific research about their diseases. The three diseases on which the Web site will initially focus are cancer, heart disease, and diabetes. After interpreting new data, the site will give viewers the option to access the full research articles on which the information is based for free. The site is currently in pilot phase and will begin posting research results in July 2005. This Web site is run by a non-profit organization made up of medical professionals, legal advisors, advocates, and HMO administrators. It gives excellent advice on such topics as how to get a second opinion or be prescribed the medicine you need. Along with the advice, it offers letters and forms you can print and use for requesting medical records and asking to see a specialist, among other things. Check out their "Legal Advice" link, too. It provides an e-mail address for the organization's legal team, which may be able to help you with your legal questions related to your disease. People Living with Cancer (from the American Society of Clinical Oncologists) The ASCO Web site provides in-depth resources on cancer types, coping with cancer, and understanding cancer. Under the “Understanding Cancer” category, there is a very useful section on “Communicating With Your Doctor” that gives guidelines for choosing an oncologist and formulating questions to ask him/her, among other things. Visit this Web site to learn about The Wellness Community, a non-profit group with 22 locations within the US and two outside it providing emotional support and education to cancer patients and their families. Their facilities serve as meeting places and activity centers for cancer patients. The Ulman Cancer Fund for Young Adults The Ulman Cancer Fund provides information, support, and other resources, free of charge, to young adults afflicted with cancer and their friends and families. See the Web site's "Services" page for information on support groups, educational resources, and information on their promising Patient Navigator Program. This program, which is a pilot program being undertaken in partnership with the Johns Hopkins Kimmel Cancer Center, connects recently diagnosed cancer patients with young adult cancer survivors and Kimmel Center staff to teach patients how to be their own advocates. Of course, this is not an exhaustive list of all cancer resources available on the Web; there are thousands of pages containing useful information. Once you have received a diagnosis, look up your specific disease on the Web for more information.
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