E-Empowerment

PCRI Insights November, 2004 vol. 7, no. 4
By Arthur Lurvey, MD, Medicare Contractor Medical Director & PCRI Board Member

In his article entitled Self-Empowerment: The Way to Find the Best Available Treatment for Your PC (Insights, Vol. 7, No. 3, August 2004) Dr. Mark Scholz makes the point that “the newly diagnosed cancer patient…must become informed himself by doing his own research and by taking responsibility for knowing as much as he can about his options.” This important task has become infinitely easier because of one source – the Internet.

The Internet allows interested patients and their families as well as medical professionals to have up-to-date scientific information at their fingertips. Most textbooks and journals, as well as abstracts of nearly all peer-reviewed journals, are on-line and can be accessed without charge. Patients can learn about the latest scientific information regarding PC and various treatment options through Internet sites that cater to the lay public.

There are many medical sites on the Internet. Where should you begin? I have discovered the following sites to be particularly useful.

 The National Library of Medicine (NLM)
www.nlm.nih.gov contains just about every significant medical publication in abstract or title form. Once at that site, clicking on the area “Health Care Professionals” takes you to several choices:

PubMed
www.ncbi.nlm.nih.gov/entrez/query.fcgi

NLM Gateway
gateway.nlm.nih.gov/gw/Cmd

or PubMed Central
www.pubmedcentral.nih.gov

PubMed allows searches of old and recent journal articles with 15 million citations–searchable by title, author, or subject. NLM Gateway allows single searches through several different NLM sources and is probably the most complete of the search engines or multiple retrieval systems. Through NLM, you can switch to books, or can ask for similar articles, and can store your results for subsequent download. PubMed Central gives you a list of journals that allow download of full text articles – either immediately at publication or a few months later. Another part of the NLM home page takes you to Clinical Trials (www.clinicaltrials.gov/). You can search by disease, location, treatment, and sponsor; and there are search tips and helpful suggestions.

 MD Consult
www.mdconsult.com is a collection of 40 full textbooks and 50 plus journals of Elsevier Corporation available through an annual subscription costing about $125. There is a search function that uses the National Library of Medicine’s Medline, and various other services including CME listings and patient handouts. Searching is very easy through both journals and textbooks, and many journals can be downloaded with full text.

 Merck-Medicus
www.Merckmedicus.com is a free service of Merck Pharmaceuticals for physicians and other health professionals who register on-line. There is a library of over 50 texts and 200 journals, as well as patient handouts, health maps, drug references, and various clinical tools. Merck-Medicus also allows a limited use of MD Consult above.

 Physicians Desk Reference
www.PDR.net is an online edition of the well known pharmaceutical publication. Medications can be searched for, as well as information on clinical trials, new FDA drugs approvals, and patient information. Physicians and other health professionals need to register, but usage of the site is free.

 Medscape
www.medscape.com has a resource center of articles based on listing of diseases, patient education modules, coverage of many clinical meetings and seminars, and discussion sites. The site is free with professional registration, though some contents (with collaboration of American College of Physician) can be purchased.

 Free Medical Journals
www.freemedicaljournals.com has currently 1380 journals with free access. Though some of the most important journals are not on their list, there is still considerable content without charge – and new journals are added regularly.

 Medical Student
www.medicalstudent.com is a digital library of free medical education and information, including some textbooks, journals, listing of professional societies, patient and consumer education, medical education sites, and medical board exam review sites.

 Centers for Medicare& Medicaid (CMS)
www.cms.hhs.gov offers a wealth of free material for both healthcare professional and lay people. One can access national or local coverage at www.cms.hhs.gov\coverage to determine if a service or medication is covered by Medicare contractors in your locale. Find Medicare rules at www.cms.hhs.gov/manuals where all instructions are given to various contractors and all transmittals or rules are listed. From the home page, many different aspects of Medicare can be found and addressed, and the search features are good – although often you get far too much information and it takes practice to limit the searches.

 National Guideline Clearinghouse
www.guideline.gov lists all clinical practice guidelines established by professional specialty societies. For patients, a separate Medicare site (www.medicare.gov) is available to explain rules and answer most question. Related important Federal Government sites include the Agency For Healthcare Research and Quality (www.ahcpr.gov) , and the Food and Drug Administration (www.fda.gov).

Other Sites of Interest
www.emedicine.com an online journal free with useful articles—not always peer reviewed.

www.oncolink.upenn.edu/ from the Abramson Cancer Center of the University of Pennsylvania.

www.AMA-assn.org Web site for the American Medical Association.

www.urologyhealth.org is a site for patient information from the AUA (American Urological Association).

www.PLWC.org People Living With Cancer is the patient information Web site of ASCO (American Society of Clinical Oncology).

These are but a few of the many medical and clinical scientific sites on the Web, and so one should be careful when interpreting information on-line. However, the sites in this article have been checked and are usually careful with their content. In any event, you should check with your personal physician and discuss what you read. Even experts disagree with some treatments, and early trials – though honorable and statistically significant – may not be reproducible or endure over time.

I call this E-Empowerment. With this wealth of research materials available via the Internet, patients can become informed co-decision makers working with their physicians to best treat any disease entities. That sort of self-empowerment will be an invaluable asset in finding the best available treatment for your prostate cancer. 

 

Prostate Cancer Research Institute (PCRI)

Material provided by PCRI is intended for educational purposes for discussion with your physician and should not be considered as medical advice. Information and opinions expressed on this website are not an endorsement by PCRI for any treatment, product or service.