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		<title>WHAT ARE BEDBUGS?  ARE THEY DANGEROUS?</title>
		<link>http://www.mydoctor1on1.com/2010/10/what-are-bedbugs-are-they-dangerous/</link>
		<comments>http://www.mydoctor1on1.com/2010/10/what-are-bedbugs-are-they-dangerous/#comments</comments>
		<pubDate>Mon, 11 Oct 2010 15:07:01 +0000</pubDate>
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		<description><![CDATA[CBBC &#8211; Newsround &#8211; In Pics: Up close with GROSS bugs in YOUR home &#8211; BBC Newsround Scientific American Brendan Borrell August 31, 2010 What Are Bedbugs? Are They Dangerous? [Re-post]: Scientific American [CLICK HERE - PATIENT-CENTERED RESOURCES] &#8220;NEW YORK—Sleep tight and don&#8217;t let the bedbugs bite? If only. The creepy critters have become such [...]]]></description>
			<content:encoded><![CDATA[<div><span style="font-family: arial; color: #000000;"><span style="font-family: arial; color: #000000;"><span style="font-family: arial; color: #000000;"><span style="font-family: arial; color: #000000;"><img class="size-full wp-image-1218 alignnone" title="bed bugs" src="http://www.mydoctor1on1.com/wp-content/uploads/2010/10/48623048_bugs_01.jpg" alt="" width="247" height="177" /> </span></span></span></span></div>
<div><span style="font-family: arial; color: #000000;"><span style="font-family: arial; color: #000000;"><span style="font-family: arial; color: #000000;"><span style="font-family: arial; color: #000000;"> </span></span><span style="font-family: arial; color: #000000;"> </span></span></span></div>
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<p><a href="http://news.bbc.co.uk/cbbcnews/hi/newsid_8880000/newsid_8889200/8889269.stm" target="_blank">CBBC &#8211; Newsround &#8211; In Pics: Up close with GROSS bugs in YOUR home</a> &#8211; BBC Newsround</p>
</div>
<div><span style="font-family: arial; color: #000000;"><span style="font-family: arial; color: #000000;"><span style="font-family: arial; color: #000000;">Scientific American</span></span></span></div>
<div><span style="font-family: arial; color: #000000;"> Brendan Borrell</span></div>
<div><span style="font-family: arial; color: #000000;"> August 31, 2010</span></div>
<div><span style="font-family: arial; color: #000000;"><span style="font-family: arial; color: #000000;"><span style="font-family: arial; color: #000000;"><span style="font-family: arial; color: #000000;"><a href="http://www.scientificamerican.com/article.cfm?id=what-are-bedbugs-are-they" target="_blank">What Are Bedbugs? Are They Dangerous? [Re-post]: Scientific American</a></span></span></span></span></div>
<p><span style="font-family: arial; color: #000000;">[<a href="http://www.mydoctor1on1.com/patient-centered-resources/bedbugs-cimex-lecturlarius/">CLICK HERE - PATIENT-CENTERED RESOURCES</a>]</span></p>
<p>&#8220;NEW YORK—Sleep tight and don&#8217;t let the bedbugs bite? If <em>only</em>. The creepy critters have become such a nuisance here that the city council is mulling legislation that would <a href="http://www.newsday.com/news/local/newyork/ny-nybug0226,0,3295256.story">establish</a> a bedbug task force, ban the sale of used mattresses, train exterminators, and regulate mattress disposal. Just how infested is Gotham? According to the <a href="http://www.nydailynews.com/ny_local/brooklyn/2009/02/24/2009-02-24_city_backs_battle_against_bedbugs.html"><em>New York Daily News</em></a>, there were 22,218 complaints to the city&#8217;s 311 hotline about infestations of the blood-sucking hemipterans, a 34 percent jump since this time last year.</p>
<p><span style="font-family: arial; color: #000000;"><span style="font-family: arial; color: #000000;"><span style="font-family: arial; color: #000000;"><span style="font-family: arial; color: #000000;"><img class="alignleft" title="Bed Bugs" src="http://www.scientificamerican.com/media/inline/what-are-bedbugs-are-they_1.jpg" alt="" width="191" height="159" /></span></span></span></span>And the Big Apple is not alone in its battle against the bugs. In Chicago, the number of official complaints doubled from 900 to 1,650 during that same period, according to the <a href="http://www.chicagotribune.com/features/lifestyle/health/chi-0226-bedbugsfeb26,0,3045951.story"><em>Tribune</em></a>. Boston already slaps warning stickers on discarded furniture and Cincinnati has its own bedbug task force. The bugs, which originally hailed from Europe, were nearly wiped out by DDT (dichlorodiphenyltrichloroethane) in the 1950s. But they have been making a comeback since the insecticide was banned in the U.S. in 1972, a decade after journalist Rachel Carson documented the chemical&#8217;s damaging effects on humans and wildlife in her book <em>Silent Spring&#8221; </em>. &#8230;.. [READ MORE ... <a href="http://www.scientificamerican.com/article.cfm?id=what-are-bedbugs-are-they" target="_blank">What Are Bedbugs? Are They Dangerous? [Re-post]: Scientific American</a> ]</p>

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		<title>YOUNG ATHLETE SUDDEN DEATH &#8211; HOW IMPORTANT ARE OUR CHILDREN?</title>
		<link>http://www.mydoctor1on1.com/2010/09/young-athlete-sudden-death-how-important-are-our-children/</link>
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		<pubDate>Fri, 24 Sep 2010 14:06:46 +0000</pubDate>
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		<category><![CDATA[ATHLETE SUDDEN DEATH]]></category>

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		<description><![CDATA[SUDDEN DEATH in young school athletes participating in recreational sports such as football, basketball or other physically exerting competitive sports, is a devastating event, both on and off the field.  The incidence of nontraumatic sudden death in organized high school / college athletes has been reported at 7.5 (male) and 1.3 (female) per million per [...]]]></description>
			<content:encoded><![CDATA[<div>SUDDEN DEATH in young school athletes participating in recreational sports such as football, basketball or other physically exerting competitive sports, is a devastating event, both on and off the field.  The incidence of nontraumatic sudden death in organized high school / college athletes has been reported at 7.5 (male) and 1.3 (female) per million per year.  These unexpected events occur instantaneously.</div>
<p></p>
<div>Given the recent deaths of Reggie Garret, age 16, playing high school football, and Jose Cruz, age 20, participating in college wrestling, raise the question as to what is our best clinical practice that we can provide for these young athletes&#8217; medical evaluation.  We should re-evaluate our athletic screening standards, perhaps concentrating on those children who would classify at high-risk or those children who are identified with positive findings in history, physical examination, lab testing or cardiac evaluations with EKG or other diagnostic modalities.  Our goal should be to protect the health and well-being of our children, while not being blinded by the shining lights of competitive sports as well as finding an appropriate screening tool that is cost-effective and life-saving.</div>
<p></p>
<div>The following resources may help to better understand the &#8220;risk/benefit&#8221; discussions for sudden death in young school athletes.</div>
<p></p>
<div>1. <a href="http://circ.ahajournals.org/cgi/content/full/94/4/850" target="_blank">Cardiovascular Preparticipation Screening of Competitive Athletes: A Statement for Health Professionals From the Sudden Death Committee (Clinical Cardiology) and Congenital Cardiac Defects Committee (Cardiovascular Disease in the Young), American Heart Association &#8212; Maron et al. 94 (4): 850 &#8212; Circulation</a></div>
<div>2. <a href="http://circ.ahajournals.org/cgi/reprint/CIRCULATIONAHA.107.189473?eaf" target="_blank">Cardiovascular Monitoring of Children and Adolescents With Heart Disease Receiving Medications for Attention Deficit/Hyperactivity Disorder: A Scientific Statement From the American Heart Association Council on Cardiovascular Disease in the Young Congenital Cardiac Defects Committee and the Council on Cardiovascular Nursing &#8212; Vetter et al. 117 (18): 2407 &#8212; Circulation</a></div>
<div>3. <a href="http://www.nejm.org/doi/full/10.1056/NEJM199604183341607" target="_blank">Sudden Death from Cardiac Causes in Children and Young Adults — NEJM</a></div>
<div>    The New England Journal of Medicine &#8211; 1996</div>
<div>    Subscription or article purchase required.</div>
<div>4. <a href="http://www.aafp.org/afp/980600ap/oconnor.html" target="_blank">Sudden Death in Young Athletes: Screening for the Needle in a Haystack &#8211; June 1998 &#8211; American Academy of Family Physicians</a> </div>
<div>5. <a href="http://www.bmj.com/content/341/bmj.c4923.full" target="_blank">Can electrocardiographic screening prevent sudden death in athletes? Yes &#8212; Pelliccia and Corrado 341 &#8212; bmj.com</a></div>
<div>    The British Medical Journal &#8211; 2010</div>
<div>6. <a href="http://www.massgeneral.org/about/pressrelease.aspx?id=1211" target="_blank">Adding ECG to health exams may prevent sudden cardiac death in young athletes &#8211; Massachusetts General Hospital, Boston, MA</a> - 2010</div>
<div>7. <a href="http://www.hopkinsmedicine.org/news/media/releases/High_School_Athletes_Offered_Free_Screening_for_Risk_of_Dangerous_Heart_Abnormalties" target="_blank">High School Athletes Offered Free Screening for Risk of Dangerous Heart Abnormalties &#8211; 05/20/2009</a></div>
<div>    Johns Hopkins Medicine</div>
<div>    Johns Hopkins University</div>
<div>8. <a href="http://health.usnews.com/health-news/family-health/heart/articles/2010/09/10/clearing-kids-for-sports-participation-sparks-conflicts.html" target="_blank">Clearing Kids for Sports Participation Sparks Conflicts &#8211; US News and World Report</a> - 2010</div>
<div>9. <a href="http://well.blogs.nytimes.com/2010/03/01/screening-the-hearts-of-young-athletes/" target="_blank">Screening the Hearts of Young Athletes &#8211; NYTimes.com</a> - 2010</div>

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		<title>STEM CELLS &#8211; THE DEBATE CONTINUES</title>
		<link>http://www.mydoctor1on1.com/2010/09/stem-cells-the-debate-continues/</link>
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		<pubDate>Wed, 15 Sep 2010 22:37:49 +0000</pubDate>
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		<description><![CDATA[The Hastings Center The Hastings Center &#8211; Bioethics and Public Policy &#8220;Ever since 1998, when researchers discovered that stem cells extracted from embryonic tissue could regenerate to become any type of cell, the nation has stood divided on the morality of such research&#8230; When stem cells are taken from an embryo, the embryo loses its [...]]]></description>
			<content:encoded><![CDATA[<h3>The Hastings Center</h3>
<div><a href="http://www.thehastingscenter.org/" target="_blank">The Hastings Center &#8211; Bioethics and Public Policy</a></div>
<p>&#8220;Ever since 1998, when researchers discovered that stem cells extracted from embryonic tissue could regenerate to become any type of cell, the nation has stood divided on the morality of such research&#8230;</p>
<p><img class="alignleft" style="border: 0px;" title="stem cells " src="http://www.thehastingscenter.org/uploadedImages/Issues/stem-cells-issues.jpg" border="0" alt="stem cells " />When stem cells are taken from an embryo, the embryo loses its viability: it cannot become implanted into a womb or develop into a fetus. To knowingly damage an embryo in order to remove stem cells is, for some, equal to destroying human life. For others, who see great promise in what stem cells might do to cure illnesses such as Alzheimer’s disease and Parkinson’s disease, it is immoral not to move forward with such research.</p>
<p>The polarity of these arguments does not do justice to the complexity of the issues involved. The question of whether to pursue stem cell research rests in a larger context of questions about nascent human life and the imperatives of scientific research&#8230;.. &#8221; [<a href="http://www.thehastingscenter.org/Issues/Default.aspx?v=260">Read more... </a>]</p>
<p><strong>Search the following Patient-Centered Resources to learn more: </strong></p>
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<li><a href="http://www.mydoctor1on1.com/patient-centered-resources/stem-cells/">http://www.mydoctor1on1.com/patient-centered-resources/stem-cells/</a></li>
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		<title>HOSPITAL READMISSIONS &#8212; WHERE IS THE BLAME?</title>
		<link>http://www.mydoctor1on1.com/2010/08/hospital-readmissions-where-is-the-blame/</link>
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		<pubDate>Wed, 25 Aug 2010 18:38:58 +0000</pubDate>
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		<description><![CDATA[Cost savings in health care reform have recently focused on patient hospital readmissions within 30 days after hospital discharge.  So, where is the blame &#8212; physicians, nurses, hospital administrators, health insurance companies, subacute nursing care facilities, discharge planners, patients and / or patient families, adequacy of post-discharge care, natural history of disease, discharge diagnosis, home [...]]]></description>
			<content:encoded><![CDATA[<p>Cost savings in health care reform have recently focused on patient hospital readmissions within 30 days after hospital discharge.  So, where is the blame &#8212; physicians, nurses, hospital administrators, health insurance companies, subacute nursing care facilities, discharge planners, patients and / or patient families, adequacy of post-discharge care, natural history of disease, discharge diagnosis, home health agencies, medication adverse events&#8230;<br />
The following selection of materials will give you a better understanding of the multiple complex relationships that encompass this costly issue in health care delivery today in America.</p>
<p>1.  <a href="http://archinte.ama-assn.org/cgi/content/full/160/8/1074" target="_blank">Arch Intern Med &#8212; Hospital Readmissions as a Measure of Quality of Health Care: Advantages and Limitations, April 24, 2000, Benbassat and Taragin 160 (8): 1074</a></p>
<p>2.  <a href="http://www.nejm.org/doi/pdf/10.1056/NEJMsa0803563" target="_blank">http://www.nejm.org/doi/pdf/10.1056/NEJMsa0803563</a>      The New England Journal of Medicine      Rehospitalizations among Patients in the Medicare Fee-for-Service Program      Stephen F. Jencks, MD, MPH et al      NEJM 2009; 360:1418-28</p>
<p>3.  <a href="http://www.hhnmag.com/hhnmag_app/jsp/articledisplay.jsp?dcrpath=TRUSTEEMAG/Article/data/03MAR2010/1003TRU_backtobasics&amp;domain=TRUSTEEMAG" target="_blank">Back to Basics: Readmission Policy and Prevention</a>      Hospitals &amp; Health Networks      Beth Feldpush, PhD et al      American Hospital Association      March 2010</p>
<p>4.  <a href="http://www.ihi.org/NR/rdonlyres/9D0C0048-2B35-4D31-B684-1665E3D51CFF/0/BisognanoBoutwellImprovingTransitionstoReduceReadmissions_FrontiersApr09.pdf" target="_blank">http://www.ihi.org/NR/rdonlyres/9D0C0048-2B35-4D31-B684-1665E3D51CFF/0/BisognanoBoutwellImprovingTransitionstoReduceReadmissions_FrontiersApr09.pdf</a>       Improving Transitions to Reduce Readmissions &#8211; 2009       Maureen Bisognano and Amy Boutwell       Institute for Healthcare Improvement (IHI)       Cambridge, MA.       <a href="http://www.ihi.org/" target="_blank">www.ihi.org</a></p>
<p>5.  <a href="http://www.ahrq.gov/about/annualconf09/jack.htm" target="_blank">AHRQ 2009 Annual Conference, Slide Presentation: Project RED: Reengineering the Hospital Discharge Process (Text Version)</a>       Brian Jack, MD       Boston University School of Medicine</p>
<p>6.  <a href="http://www.cfmc.org/caretransitions/files/Care_Transition_Article_Remington_Report_Jan_2010.pdf" target="_blank">http://www.cfmc.org/caretransitions/files/Care_Transition_Article_Remington_Report_Jan_2010.pdf</a>       Improving Care Transitions and Reducing Hospital Readmissions:       Establishing The Evidence For Community-Based Implementation Strategies Through         The Care Transition Theme       Thiomedi Ventura, MS, MPH et al       The Remington Report       Jan/Feb 2010       <a href="http://www.remingtonreport.com/" target="_blank">www.remingtonreport.com</a>  </p>
<p>7.  <a href="http://www.ahrq.gov/news/kt/red/readmissionslides/readslides-contents.htm" target="_blank">Reducing Avoidable Hospital Readmissions: Slide Presentation</a>      Florida Hospital Association &#8211; June 2010      Steve Hines, PhD      VP, Research      Health Research and Educational Trust</p>

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		<title>LETTING GO</title>
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		<pubDate>Tue, 10 Aug 2010 21:16:48 +0000</pubDate>
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		<description><![CDATA[WHAT SHOULD MEDICINE DO WHEN IT CAN&#8217;T SAVE YOUR LIFE? Atul Gawande, MD THE NEW YORKER Annals of Medicine August 2, 2010 &#8220;Modern medicine is good at staving off death with aggressive interventions &#8212; and bad at knowing when to focus, instead, on improving the days that terminal patients have left&#8230;&#8221; Click here to read [...]]]></description>
			<content:encoded><![CDATA[<div>WHAT SHOULD MEDICINE DO WHEN IT CAN&#8217;T SAVE YOUR LIFE?</div>
<div>Atul Gawande, MD</div>
<div><strong>THE NEW YORKER</strong></div>
<div>Annals of Medicine</div>
<div>August 2, 2010</div>
<div>&#8220;Modern medicine is good at staving off death with aggressive interventions &#8212; and bad at knowing when to focus, instead, on improving the days that terminal patients have left&#8230;&#8221;</div>
<div><strong> </strong></div>
<div><strong>Click here to read more&#8230;.</strong></div>
<div><a href="http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande">Hospice medical care for dying patients : The New Yorker</a></div>
<div>Search the following Patient-Centered Resources to learn more:</div>
<div>1.  <a href="http://www.mydoctor1on1.com/patient-centered-resources/end-of-life-care/">End of Life Care</a></div>
<div>2.  <a href="http://www.mydoctor1on1.com/patient-centered-resources/palliative-care/">Palliative Care</a></div>
<div>3.  <a href="http://www.putitinwriting.org/putitinwriting_app/index.jsp" target="_blank">Advance Directives</a></div>

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		<title>Fight The Bite &#8211; West Nile Virus</title>
		<link>http://www.mydoctor1on1.com/2010/07/fight-the-bite-west-nile-virus/</link>
		<comments>http://www.mydoctor1on1.com/2010/07/fight-the-bite-west-nile-virus/#comments</comments>
		<pubDate>Thu, 08 Jul 2010 17:43:26 +0000</pubDate>
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		<description><![CDATA[IT&#8217;s SUMMERTIME &#8230;    A West Nile virus prevention and education campaign brought to you by Colorado&#8217;s state and local health departments The Fight the Bite campaign is now used across the USA in 21 states, in Canada, and in Italy. Contact us to use the logo and educational materials: - www.FightTheBiteColorado.com - Fight The Bite [...]]]></description>
			<content:encoded><![CDATA[<h2><span style="color: #ff6600;">IT&#8217;s SUMMERTIME</span> &#8230;</h2>
<p><img class="size-full wp-image-587 alignleft" style="border: 0px;" title="Fight The Bite - West Nile Virus" src="http://www.mydoctor1on1.com/wp-content/uploads/2010/07/fight-bite.gif" alt="Fight The Bite - West Nile Virus" width="160" height="241" /></p>
<p> </p>
<p> A West Nile virus prevention and education campaign brought to you by Colorado&#8217;s state and local health departments</p>
<p>The Fight the Bite campaign is now used across the USA in 21 states, in Canada, and in Italy. Contact us to use the logo and educational materials:</p>
<p>- <a href="http://www.FightTheBiteColorado.com">www.FightTheBiteColorado.com</a> - Fight The Bite Colorado</p>
<p>- Patient-Centered Resources &#8211; <a href="http://www.mydoctor1on1.com/patient-centered-resources/west-nile-virus/">West Nile Virus</a></p>
<p> </p>
<p> </p>
<p><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="FONT-FAMILY: Arial; FONT-SIZE: 10pt"> </span></span></span></span></p>
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		<title>Genetic Testing</title>
		<link>http://www.mydoctor1on1.com/2010/06/genetic-testing/</link>
		<comments>http://www.mydoctor1on1.com/2010/06/genetic-testing/#comments</comments>
		<pubDate>Mon, 28 Jun 2010 12:40:07 +0000</pubDate>
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		<category><![CDATA[Genetic Testing]]></category>

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		<description><![CDATA[Adapted from www.genome.gov/10002335 &#8212;  National Human Genome Research Institute. The term &#8220;genetic testing&#8221; covers an array of techniques including analysis of human DNA, RNA or protein. Genetic tests are used as a health care tool to detect gene variants associated with a specific disease or condition, as well as for non-clinical uses such as paternity [...]]]></description>
			<content:encoded><![CDATA[<p><img class="alignleft" title="Genetic Testing" src="http://www.genome.gov/Images/content/lab_worker.jpg" alt="" width="198" height="138" /><span><span style="font-family: arial; color: black; font-size: "><strong><em>Adapted from www.genome.gov/10002335</em></strong> &#8212;  National Human Genome Research Institute</span></span>. The term &#8220;genetic testing&#8221; covers an array of techniques including analysis of human DNA, RNA or protein. Genetic tests are used as a health care tool to detect gene variants associated with a specific disease or condition, as well as for non-clinical uses such as paternity testing and forensics. In the clinical setting, genetic tests can be performed to confirm a suspected diagnosis, to predict the possibility of future illness, to detect the presence of a carrier state in unaffected individuals (whose children may be at risk), and to predict response to therapy. They are also performed to screen fetuses, newborns or embryos used in in vitro fertilization for genetic defects.</p>
<p>Scientists are revealing ever more associations between particular gene mutations and disease, and over a thousand tests can now determine whether a person carries a particular disease-associated allele. As the number of tests continues to rise, their use in the health care setting is becoming more commonplace. NHGRI is funding research into innovative sequencing technologies so that, in a few years, the sequencing of a patient&#8217;s entire genome will be an affordable standard diagnostic tool used in health care. Using genomic sequencing, it will be possible to analyze all of a patient&#8217;s genes to detect which disease-associated gene variants they carry.</p>
<ul>
<li><strong>A Brief Primer on Genetic Testing</strong><br />
A paper presented at the World Economic Forum in 2003 by Francis Collins.Many genetic tests are marketed directly to consumers on the internet and elsewhere. Some companies advertise clinical genetic tests directly to consumers. This raises concern because it leads to instances where customers receive clinically significant test results without appropriate counseling from a health care professional, and are left to interpret complex results on their own. Other companies offer tests and associated merchandise purported to help clients select an optimal diet, stop smoking, or maintain a youthful appearance. These claims lack sufficient scientific support to demonstrate their validity.</li>
</ul>
<p>Several agencies are involved in oversight of genetic testing. The Centers for Medicare and Medicaid Services (CMS) regulates clinical laboratory testing to ensure laboratory compliance with the Clinical Laboratory Improvement Amendment of 1988, showing accuracy and reliability in conducting assays. The Federal Trade Commission (FTC) oversees advertising of tests and products. The Food and Drug Administration (FDA) regulates tests sold as &#8220;diagnostic devices,&#8221; that is, tests manufactured by one company and then sold as a kit to a laboratory for genetic testing. However, the FDA does not regulate &#8220;home brew&#8221; tests, that is, tests that are both manufactured and performed by the same laboratory. Many common genetic tests (including the BRCA breast cancer gene tests) fall into this category. Because of this regulatory exception, genetic testing services using home brew tests can be marketed directly to the medical community &#8211; and the public &#8211; without FDA regulation or oversight.</p>
<h4 id="al-2">The Growth of Genetic Testing Raises Questions</h4>
<ul>
<li>How should such tests be regulated? Should &#8220;home brew&#8221; tests be regulated by the FDA just like diagnostic devices?</li>
<li>What criteria should be used to determine whether a test can be patented (See <a href="http://www.mydoctor1on1.com/19016590">Intellectual Property and Genomics</a>), and how do such patents affect scientific research?</li>
<li>What level of analytical validity (accuracy of the test result), clinical validity (use of the test as a diagnostic tool), or clinical utility (use of test result for treatment) should be required for tests offered to the public?</li>
<li>What counseling should be provided for recipients of test results, and who should provide that guidance?</li>
<li>How can the public be protected from <a href="http://www.mydoctor1on1.com/10002077">genetic discrimination</a>?</li>
</ul>
<h4 id="al-3">Legislation on Genetic Testing</h4>
<p>Legislation is being considered by Congress that would prohibit genetic discrimination by employers or health insurance providers (See: <a href="http://www.mydoctor1on1.com/10002077">Genetic Discrimination: Legislation</a>).</p>
<ul>
<li><a href="http://thomas.loc.gov/cgi-bin/bdquery/z?d109:h.r.01353:">Prenatally Diagnosed Condition Awareness Act</a> [thomas.loc.gov](Introduced in House March 16, 2005) [H.R.1353.IH]</li>
<li><a href="http://thomas.loc.gov/cgi-bin/bdquery/z?d109:s.00609:">Prenatally Diagnosed Condition Awareness Act</a> [thomas.loc.gov] (Introduced in Senate )[S.609.IS]</li>
<li><a href="http://www.ncsl.org/programs/health/genetics/Oversight.pdf">Overview of Genetic Testing</a> [ncsl.org] By Laura Sternesky, Association of State and Territorial Health Officials. January 2002.</li>
</ul>
<h5>Advisory Committees:</h5>
<p>The Secretary&#8217;s Advisory Committee on Genetics, Health, and Society (SACGHS) &#8211; staffed by the National Institutes of Health (NIH) Office of Biotechnology Activities &#8211; provides policy advice to the Department of Health and Human Services (DHHS) on the broad array of complex medical, ethical, legal and social issues raised by genetic testing.</p>
<ul>
<li><strong>SACGHS Web site</strong>: <a href="http://www4.od.nih.gov/oba/sacghs.htm">Secretary&#8217;s Advisory Committee on Genetics, Health, and Society</a> [od.nih.gov]</li>
<li><strong>SACGHS Predecessor Committee</strong>: <a href="http://www4.od.nih.gov/oba/sacgt/gtdocuments.html">Secretary&#8217;s Advisory Committee on Genetic Testing</a> (SACGT) [od.nih.gov] (charter expired)</li>
</ul>
<h4 id="al-4">NHGRI Interest in Genetic Testing</h4>
<h5>Concerns and Activities</h5>
<p>Tests that detect gene variants associated with disease are diagnostic tools that advance healthcare. Because of its increasing influence on public health, the NHGRI is monitoring the development of genetic testing practices. NHGRI is particularly interested in issues surrounding the establishment of clinical utility and validity of such tests. As a member of SACGHS, NHGRI is participating in designing advisory guidelines for the direct marketing of tests to consumers.</p>
<p>NHGRI is concerned that public fear of <a href="http://www.mydoctor1on1.com/10002077">genetic discrimination</a> is hindering scientific advances that would lead to diagnostic genetic tests and drugs targeted to individuals with a specific genetic profile.</p>
<p>NHGRI is studying the possible effects of intellectual property on the future of genetic testing and the integration of genomic medicine into health care in the U.S.</p>
<ul>
<li>See: <a href="http://www.nationalacademies.org/morenews/20051117.html">Reaping the Benefits of Genomic and Proteomic Research: Intellectual Property Rights, Innovation, and Public Health</a> [nationalacademies.org]</li>
</ul>
<p>Genetic counseling is important for those who are considering genetic testing. NHGRI is interested in assuring high standards for the field and participates in a joint training program for genetic counselors with Johns Hopkins University. NHGRI is committed to helping ensure access to genetic counselors for those in need.</p>
<ul>
<li><a href="http://www.mydoctor1on1.com/12010659">Direct to Consumer Marketing of Genetic Tests</a></li>
<li><a href="http://www.mydoctor1on1.com/12010660">NHGRI Direct to Consumer Advertising Workshop Summary</a></li>
<li><a href="http://www4.od.nih.gov/oba/sacghs/reports/DTCletter.pdf">Direct-to-Consumer marketing SACGHS Letter to the Secretary of Health and Human Services</a> [od.nih.gov] (December 8, 2004)</li>
<li><a href="http://www4.od.nih.gov/oba/sacghs/reports/Secretary_Response_to_SACGHS_03_03_05.pdf">Secretary Leavitt&#8217;s Response to SACGHS</a> [od.nih.gov] (March 3, 2005)</li>
<li><a href="http://www.mydoctor1on1.com/10002350">Senate Labor and Human Resources Committee Hearing on NIH Revitalization, Cancer &amp; Genetics</a><br />
Testimony by NHGRI Director Dr. Francis Collins, March 6-7, 1996.</li>
</ul>
<h4 id="al-5">Policy Recommendations</h4>
<p>Discrimination in health insurance, and the fear of potential discrimination, threaten both society&#8217;s ability to use new genetic technologies to improve human health and the ability to conduct the very research we need to understand, treat and prevent genetic disease. NHGRI advocates for a federal resolution to the public&#8217;s concern that, by availing themselves to genetic tests, they risk being discriminated against by employers and heath insurance providers (See: <a href="http://www.mydoctor1on1.com/10002077">Genetic Discrimination</a>).</p>
<p>NHGRI supports <a href="http://www.nationalacademies.org/morenews/20051117.html">intellectual property</a> [national academies.org] practices that both enable research to advance and foster the development of genetic testing products and associated medicines.</p>
<ul>
<li><a href="http://www.mydoctor1on1.com/10002352">Subcommittee Hearing on Task Force for Genetic Testing</a><br />
Testimony by NHGRI Director Dr. Francis Collins, July 22, 1997</li>
<li><a href="http://www.genome.gov/10002351">Advances in Genetics Research and Technologies: Challenges for Public Policy</a><br />
Senate Committee on Labor and Human Resources. Testimony by NHGRI Director Dr. Francis Collins, July 25, 1996.</li>
<li><a href="http://www.house.gov/science/francis_collins.htm">Technological Advances in Genetics Testing: Implications for the Future</a> [house.gov] House Committee on Science, Subcommittee on Technology, September 17, 1996</li>
<li><a href="http://www.mydoctor1on1.com/10002349">Senate Cancer Coalition Hearing on Genetic Testing</a><br />
Senate Cancer Coalition. Testimony by NHGRI Director Dr. Francis Collins, September 29, 1995.</li>
</ul>
<h4 id="al-6">Reports on Genetic Testing</h4>
<ul>
<li><a href="http://www.mydoctor1on1.com/Pages/Health/PatientsPublicInfo/GeneticTestingWhatItMeansForYourHealth.pdf">Genetic Testing: What It Means For Your Health and Your Family&#8217;s Health</a></li>
<li><a href="http://www.genetests.org/">Genetests</a> [genetests.org]<br />
NIH database of available genetic tests and clinics and laboratories performing genetic testing</li>
<li><a href="http://www.mydoctor1on1.com/10001733">Promoting Safe and Effective Genetic Testing in the United States</a></li>
<li><a href="http://www.aei.org/books/bookID.99,filter.social/book_detail.asp">Genetic Testing and the Use of Information</a> [aei.org]</li>
<li><a href="http://www.dnapolicy.org/genetics/testing.jhtml.html">Genetic and Public Policy Center Summary of Genetic Testing</a> [dnapolicy.org]</li>
<li><a href="http://www.mydoctor1on1.com/16015415">Task Force Recommends Against Routine Testing for Genetic Risk of Breast or Ovarian Cancer in the General Population</a>
<ul>
<li>Read the Recommendation: <a href="http://www.ahrq.gov/clinic/uspstf/uspsbrgen.htm">Genetic Risk Assessment and BRCA Mutation Testing for Breast and Ovarian Cancer Susceptibility</a> [ahrq.gov]<br />
U.S. Preventive Services Task Force, September 2005</li>
</ul>
</li>
<li><a href="http://consensus.nih.gov/1997/1997GeneticTestCysticFibrosis106html.htm">Genetic Testing for Cystic Fibrosis Consensus Statement</a> [consensus.nih.gov]<br />
1997 Conference.</p>
<ul>
<li><a href="http://www.mydoctor1on1.com/10001741">Followup Workshop</a><br />
1997</li>
<li><a href="http://www.mydoctor1on1.com/10001755">Population Screening for the Cystic Fibrosis Gene</a><br />
1990 National Institutes of Health Workshop Statement.</li>
</ul>
</li>
<li><a href="http://www.mydoctor1on1.com/10001733">Promoting Safe and Effective Genetic Testing in the United States</a><br />
1997 Report by the Ethical, Legal and Social Implications Program Working Group Task Force.</li>
<li><a href="http://www.mydoctor1on1.com/10001753">Reproductive Testing: Impact on Women</a><br />
1993 National Institutes of Health Workshop Statement.</li>
</ul>
<div><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"> </span></span></span></span></span></div>
<div><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"> </span></span></span></span></span></div>
<p><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"> </span></span></span></span></span></p>
<div><span style="FONT-WEIGHT: bold">THE NEW YORK TIMES</span></div>
<div>Andrew Pollack</div>
<div>June 11, 2010</div>
<div><span style="FONT-WEIGHT: bold">F.D.A. FAULTS COMPANIES ON UNAPPROVED GENETIC TESTS</span></div>
<div><span style="FONT-WEIGHT: bold"><a href="http://www.nytimes.com/2010/06/12/health/12genome.html?ref=health">F.D.A. Faults 5 Companies on Genetic Tests &#8211; NYTimes.com</a><br />
</span></div>
<div><span style="FONT-WEIGHT: bold"><br />
</span></div>
<div><span style="FONT-WEIGHT: bold"><br />
</span></div>
<div><span style="FONT-WEIGHT: bold">MEDICAL NEWS TODAY</span></div>
<div>June 12, 2010</div>
<div><span style="FONT-WEIGHT: bold">FIVE GENETIC TEST MAKERS TOLD TO GET FDA APPROVAL</span></div>
<div><span style="FONT-WEIGHT: bold">BEFORE SELLING PRODUCTS TO THE PUBLIC</span></div>
<div><span style="FONT-WEIGHT: bold"><a href="http://www.medicalnewstoday.com/articles/191581.php">Five Genetic Test Makers Told To Get FDA Approval Before Selling Products To The Public</a><br />
</span></div>
<div><span style="FONT-WEIGHT: bold"><br />
</span></div>
<div><span style="FONT-WEIGHT: bold"><br />
</span></div>
<div><span style="FONT-WEIGHT: bold">LETTERS TO INDUSTRY</span></div>
<div><span style="FONT-WEIGHT: bold">U.S. FOOD AND DRUG ADMINISTRATION</span></div>
<div><span style="FONT-WEIGHT: bold"><br />
</span></div>
<div><span style="FONT-WEIGHT: bold"><a href="http://www.fda.gov/MedicalDevices/ResourcesforYou/Industry/ucm111104.htm">Letters to Industry</a><br />
</span></div>
<p><span style="FONT-WEIGHT: bold"> </span></p>
<p><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"><span style="FONT-WEIGHT: bold"> </span></span></span></span></span></span></p>
<li><a href="http://www.mydoctor1on1.com/downloads/MedicalDevices/ResourcesforYou/Industry/UCM215239.pdf">Letter to Knome, Inc. Concering the KnomeCOMPLETE (PDF &#8211; 91KB)</a><br />
June 10, 2010</li>
<li><a href="http://www.mydoctor1on1.com/downloads/MedicalDevices/ResourcesforYou/Industry/UCM215240.pdf">Letter to 23andMe, Inc. Concerning the 23andMe Personal Genome Service (PDF &#8211; 103KB)</a><br />
June 10, 2010</li>
<li><a href="http://www.mydoctor1on1.com/downloads/MedicalDevices/ResourcesforYou/Industry/UCM215241.pdf">Letter to deCODE Genetics Concerning the deCODEme Complete Scan (PDF &#8211; 96KB)</a><br />
June 10, 2010</li>
<li><a href="http://www.mydoctor1on1.com/downloads/MedicalDevices/ResourcesforYou/Industry/UCM215242.pdf">Letter to Illumina, Inc. Concerning the Illumina Infinium HumanHap550 array (PDF &#8211; 88KB)</a><br />
June 10, 2010</li>
<li><a href="http://www.mydoctor1on1.com/downloads/MedicalDevices/ResourcesforYou/Industry/UCM215243.pdf">Letter to Navigenics Concerning the NaviGenics Health Compass (PDF &#8211; 85KB)</a><br />
June 10, 2010</li>
<li><a href="http://www.mydoctor1on1.com/MedicalDevices/ResourcesforYou/Industry/ucm211866.htm">Letter to Pathway Genomics Corporation Concerning the Pathway Genomics Genetic Health Report</a><br />
May 10, 2010</li>

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		<title>EVALUATION OF MEDICAL WEB RESOURCES</title>
		<link>http://www.mydoctor1on1.com/2010/06/evaluation-of-medical-web-resources/</link>
		<comments>http://www.mydoctor1on1.com/2010/06/evaluation-of-medical-web-resources/#comments</comments>
		<pubDate>Mon, 07 Jun 2010 21:23:41 +0000</pubDate>
		<dc:creator>admin</dc:creator>
				<category><![CDATA[.]]></category>

		<guid isPermaLink="false">http://www.mydoctor1on1.com/?p=1059</guid>
		<description><![CDATA[The medical Internet can be a vast and intimidating place when you are researching for reliable and authoritative medical information. The following resources will help you better navigate the medical internet, so that you are a more informed patient and medical professional. The importance of critical medical thinking and academic/educational resources highlights the continuing need [...]]]></description>
			<content:encoded><![CDATA[<p>The medical Internet can be a vast and intimidating place when you are researching for reliable and authoritative medical information. The following resources will help you better navigate the medical internet, so that you are a more informed patient and medical professional. The importance of critical medical thinking and academic/educational resources highlights the continuing need for the emphasis of KNOWLEDGE&#8230; Everyone now must be involved with &#8220;Participatory Medicine,&#8221; in our new era of health care delivery. <strong>THE NEW ENGLAND JOURNAL OF MEDICINE</strong></p>
<div><span style="font-weight: bold;"> </span></div>
<div><span style="font-weight: bold;">UNTANGLING THE WEB &#8211; PATIENTS, DOCTORS AND THE INTERNET</span></div>
<div><span style="font-weight: bold;">Pamela Hartzband, MD et al</span></div>
<div><span style="font-weight: bold;">Vol. 362:1063-66</span></div>
<div><span style="font-weight: bold;">June 07, 2010</span></div>
<div><span style="font-weight: bold;"> </span></div>
<ul>
<li><span style="font-weight: bold;"><a href="http://content.nejm.org/cgi/content/full/362/12/1063" target="_blank">NEJM &#8212; Untangling the Web &#8212; Patients, Doctors, and the Internet</a> </span></li>
</ul>
<p><span style="font-weight: bold;"> </span></p>
<ul>
<li><span style="font-weight: bold;"><a href="http://www.mlanet.org/resources/userguide.html" target="_blank">Medical Library Association | Resources : A User&#8217;s Guide to Finding and Evaluating Health Information on the Web</a> </span></li>
<li><span style="font-weight: bold;"><a href="http://www.nlm.nih.gov/medlineplus/evaluatinghealthinformation.html" target="_blank">Evaluating Health Information: MedlinePlus</a> </span></li>
<li><span style="font-weight: bold;"><a href="http://www.nlm.nih.gov/medlineplus/healthywebsurfing.html" target="_blank">MedlinePlus: Guide to Healthy Web Surfing</a> </span></li>
<li><span style="font-weight: bold;"><a href="http://www.nlm.nih.gov/medlineplus/healthfraud.html" target="_blank">Health Fraud: MedlinePlus</a> </span></li>
<li><span style="font-weight: bold;"><a href="http://www.nlm.nih.gov/medlineplus/webeval/webeval.html" target="_blank">Evaluating Internet Health Information: A Tutorial from the National Library of Medicine</a> </span></li>
<li><span style="font-weight: bold;"><a href="http://www.cancer.gov/cancertopics/factsheet/Information/internet" target="_blank">Evaluating Health Information on the Internet &#8211; National Cancer Institute</a> </span></li>
<li><span style="font-weight: bold;"><a href="http://www.library.arizona.edu/help/tutorials/webinfo/" target="_blank">Evaluating Information on the Web | The University of Arizona University Libraries</a> </span></li>
<li><span style="font-weight: bold;"><a href="http://www.ucsfhealth.org/adult/edu/EvaluatingHealthInfo.html" target="_blank">Patient Education | Evaluating Health Information</a>  &#8211; </span><span style="font-weight: bold;">University of California, San Francisco</span></li>
<li><span style="font-weight: bold;"><a href="http://www.health-insight.harvard.edu/" target="_blank">Health Insight &#8211; Taking Charge of Health Information</a>  &#8211; </span><span style="font-weight: bold;">Harvard University</span></li>
<li><span style="font-weight: bold;"><a href="http://healthlinks.washington.edu/howto/navigating/" target="_blank">Navigating the Web: Using Search Tools and Evaluating Resources</a>  &#8211; </span><span style="font-weight: bold;">Healthlinks, University of Washington, Seattle, WA.</span></li>
<li><span style="font-weight: bold;"><a href="http://www.library.cornell.edu/olinuris/ref/research/skill26.htm" target="_blank">Critically Analyzing Information Sources</a>  &#8211; </span><span style="font-weight: bold;">Cornell University</span></li>
<li><span style="font-weight: bold;"><a href="http://nccam.nih.gov/health/webresources/" target="_blank">Evaluating Web-Based Health Resources [NCCAM CAM Basics]</a>  &#8211; </span><span style="font-weight: bold;">National Center for Complementary and Alternative Medicine</span></li>
<li><span style="font-weight: bold;"><a href="http://www.hon.ch/HONcode/Conduct.html" target="_blank">HONcode: Principles &#8211; Quality and trustworthy health information</a>  &#8211; </span><span style="font-weight: bold;">Health on the Net Foundation</span></li>
<li><span style="font-weight: bold;"><a href="http://www.quackwatch.org/index.html" target="_blank">Quackwatch</a></span></li>
</ul>

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		<title>The Promise of Personalized Medicine</title>
		<link>http://www.mydoctor1on1.com/2010/05/the-promise-of-personalized-medicine/</link>
		<comments>http://www.mydoctor1on1.com/2010/05/the-promise-of-personalized-medicine/#comments</comments>
		<pubDate>Fri, 28 May 2010 16:48:00 +0000</pubDate>
		<dc:creator>admin</dc:creator>
				<category><![CDATA[.]]></category>
		<category><![CDATA[biology of disease]]></category>
		<category><![CDATA[Dr. Zerhouni]]></category>
		<category><![CDATA[Elias A. Zerhouni]]></category>
		<category><![CDATA[M.D]]></category>
		<category><![CDATA[NIH]]></category>
		<category><![CDATA[radiology]]></category>

		<guid isPermaLink="false">http://www.mydoctor1on1.com/?p=155</guid>
		<description><![CDATA[Located at:  The Promise of Personalized Medicine                    Medline Plus &#8211; The Magazine                    National Institutes of Health NIH Director Elias A. Zerhouni, M.D., leads the NIH&#8217;s 27 Institutes and Centers, with more than 18,000 employees and a 2006 [...]]]></description>
			<content:encoded><![CDATA[<div class="wp-caption alignleft" style="width: 260px"><img title="Photo courtesy of NIH" src="http://www.nlm.nih.gov/medlineplus/magazine/issues/winter07/images/drz01.jpg" alt="Photo courtesy of NIH" width="250" height="166" /><p class="wp-caption-text">Photo courtesy of NIH</p></div>
<div>Located at:  <a href="http://www.nlm.nih.gov/medlineplus/magazine/issues/winter07/articles/winter07pg2-3.html" target="_blank">The Promise of Personalized Medicine</a></div>
<div>                   Medline Plus &#8211; The Magazine</div>
<div>                   National Institutes of Health</div>
<p>NIH Director Elias A. Zerhouni, M.D., leads the NIH&#8217;s 27 Institutes and Centers, with more than 18,000 employees and a 2006 budget of $28.6 billion. A well-respected leader in the field of radiology and medicine, he has spent his career providing clinical, scientific, and administrative leadership. Recently, Dr. Zerhouni sat down with magazine coordinator Christopher Klose to discuss some of Dr. Zerhouni&#8217;s own experiences and hopes for the future of medicine. <span><strong>Klose:</strong></span> <em>What motivated you to become a doctor?</em> <span><strong>Dr. Zerhouni</strong></span>: I just like people; the interaction and sense of being relevant. At first, I wanted to be a mathematician or a physicist. I was more interested in rocketry and some of the careers typical of the 1950s. Years later when I was in university, I volunteered in the poor areas. I saw what was going on with the poor and that touched me. That was when I realized that it&#8217;s great to send rockets to the moon, but perhaps the most important thing is people. That&#8217;s why I went into medicine. <span><strong>Klose:</strong></span> <em>Why did you decide to specialize in radiology?</em> <span><strong><span id="more-155"></span>Dr. Zerhouni</strong></span>: Sometimes, life is just a matter of encountering people who show you something interesting. I had a radiologist who showed me my first CAT [computed axial tomography] scan. Right away, I realized this was important; this was something I could do. Radiology has a direct impact on understanding the biology of disease. Here is the crux of my research. I&#8217;m not a biologist but I work in biology, I&#8217;m not a mathematician, yet I use mathematics. Every piece of work I&#8217;ve done has been to increase our ability to quantify – to use quantitative methods – to extract biological information. For example, I first discovered CAT scans could be used to measure calcium density within tissues, which led to my getting a patent. This paved the way for doing the same with lung cancer and then osteoporosis. And I discovered a technique in MRI [magnetic resonance imaging] that allows you to measure cardiac function very precisely. For me, it has been this constant intermarriage of the physical and biological sciences in which the whole is greater than the sum of the parts. If you look at the history of medicine, of science in general, we&#8217;ve always gone from being able to empirically observe to being able to measure accurately. The direction has always been to go from less precise to more precise tools, from less to more quantitative data, to inform yourself and increase your knowledge.</p>
<div id="imgright_green"><img class="alignright" src="http://www.nlm.nih.gov/medlineplus/magazine/issues/winter07/images/drz02.jpg" alt="NIH Director Elias A. Zerhouni" /></div>
<p><span><strong>Klose:</strong></span> <em>How would you describe your own approach to research?</em> <span><strong>Dr. Zerhouni</strong></span>: I&#8217;m sort of a hybrid because I believe that seeing trends is key. I don&#8217;t like to just analyze things. I&#8217;m entrepreneurial and want to make a difference. And that really requires what I would call operational attention. So I&#8217;m not really a detail person; details are a tool for reaching endpoints, to drive a particular vision. <span><strong>Klose:</strong></span> <em>How do you see medicine today changing?</em> <span><strong>Dr. Zerhouni</strong></span>: The relationship between patient and doctor is changing quickly. Before, the patient was passive and receiving, the doctor all-knowing and giving. We tried to cure people of whatever had evolved in them. Now we need to be much more predictive about what happens to whom, and when, because we&#8217;re dealing with more long-term, chronic diseases. Traditional one-size-fits-all treatments must be tailored to the individual because people don&#8217;t react exactly alike. If we&#8217;re smart enough, we will be able to preempt disease—to strike it before it strikes the patient. <span><strong>Klose:</strong></span> <em>How do you see the doctor-patient evolution coming about?</em> <span><strong>Dr. Zerhouni</strong></span>: This will require much more health education, more literacy on the part of patients, and much more communication. Look at heart disease, for example. In the past it was, &#8220;If you have chest pain, come and see me.&#8221; Now it&#8217;s &#8220;If you have high cholesterol you have to watch it; here is the kind you have and what you need to do.&#8221; In other words, there is an explanation relationship between doctor and patient. Every time a new element of complexity is added, the need for communication doubles. This is where I think we need to have a multiplicity of media to increase the health literacy of the public. <span><strong>Klose:</strong></span> <em>How does this new need for communication affect the future of health literacy?</em> <span><strong>Dr. Zerhouni</strong></span>: We are in a revolutionary period of medicine that I call the four Ps: predictive, personalized, preemptive and participatory. This requires patient involvement well before disease strikes. As opposed to the doctor-centric, curative model of the past, the future is going to be patient-centric and proactive. It must be based on education and communication. This is what I am pushing for at NIH. I like to change things and believe we need to be ahead of the curve. The challenge is to channel the energy of this outstanding organization to help the public better care for itself. No one knows exactly how to do this. It requires voluntary, intelligent participation, not passive acceptance. We can provide the information, but you have to do something for yourself. <span><strong>Klose:</strong></span> <em>How does this new magazine—NIH MedlinePlus—fit into the four Ps model?</em> <span><strong>Dr. Zerhouni</strong></span>: MedlinePlus is another link in our changing world, part of the hand-in-hand approach that NIH wants to extend to the public as we both travel this new era of health care – learning and working together. <span><strong>Klose:</strong></span> <em>What advice would you offer our readers about the future of health care?</em> <span><strong>Dr. Zerhouni</strong></span>: If you want a long and healthy life, take responsibility for yourself. NIH wants to give you the best tools to do that. That&#8217;s our mission. So, the big thing is: No one has the answer but you. Take responsibility for your care because you can affect it more than any doctor or drug can by doing very simple things, and by knowing where to get more information if what you&#8217;re doing is not enough. Take charge with knowledge. We&#8217;ll give you the knowledge; you provide the power. Knowledge with action is power.</p>
<div id="imgleft_blue"><img src="http://www.nlm.nih.gov/medlineplus/magazine/issues/winter07/images/drz03.jpg" alt="NIH Director Elias A. Zerhouni" />Photo courtesy of NIH</div>
<p><span><strong>Klose:</strong></span> <em>What is the prognosis for our ailing health care system?</em> <span><strong>Dr. Zerhouni</strong></span>: That&#8217;s a tough question. What&#8217;s really amazing is it&#8217;s not that people don&#8217;t know or don&#8217;t have an idea what to do. We know that if we could change behaviors then we could reduce the disease burden; that if you can stick to a diet and an exercise program and maintain certain parameters, such as not smoking, you&#8217;d be fine. We know that prevention is more important than ever, yet the system does not fund prevention. The mystery to me is why the system is so resistant to change. My total experience as a scientist, then as a science administrator and now as an institutional leader has been about managed change. It&#8217;s clear to me that this is a revolutionary period of change, and there is no magic answer. <span><strong>Klose:</strong></span> <em>What&#8217;s to be done to improve the health care system?</em> <span><strong>Dr. Zerhouni</strong></span>: Just like anything else, it is going to take the ability to free up the American genius in adapting itself to a challenge. Right now, everyone&#8217;s focused on finding the magic answer. But health care is different from region to region across the country. We need to give people the degrees of freedom they need to experiment with different health care solutions. We need to get back to the genius of our country. The more we free our ability to do that, the more we make sure that we don&#8217;t become so bureaucratic and so rigid that there is only one solution – the one we&#8217;ve used for 50 years that says, &#8220;Well, we&#8217;ve been doing this for 50 years, it&#8217;s worked! We&#8217;re great! We&#8217;re wonderful! Why don&#8217;t we just rest on our laurels? Why try something else?&#8221; The NIH must serve as the source of the most credible knowledge. Not to spoon-feed people, but to empower them to feel that there is no limit to what they can achieve for themselves in their own health — just like there is no limit to what you can achieve in this country. <span style="font-family: arial; color: #000000; font-size: x-small;"><span style="font-family: arial; color: #000000; font-size: x-small;"></p>
<div>Located at:  <a href="http://www.nlm.nih.gov/medlineplus/magazine/issues/winter07/articles/winter07pg2-3.html" target="_blank">The Promise of Personalized Medicine</a></div>
<div>                   Medline Plus &#8211; The Magazine</div>
<div>                   National Institutes of Health</div>
<p></span></span></p>

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		<title>A Patient-Centric Definition of Participatory Medicine</title>
		<link>http://www.mydoctor1on1.com/2010/05/a-patient-centric-definition-of-participatory-medicine/</link>
		<comments>http://www.mydoctor1on1.com/2010/05/a-patient-centric-definition-of-participatory-medicine/#comments</comments>
		<pubDate>Fri, 28 May 2010 15:38:36 +0000</pubDate>
		<dc:creator>admin</dc:creator>
				<category><![CDATA[.]]></category>
		<category><![CDATA[Gilles Frydman]]></category>
		<category><![CDATA[Participatory Medicine]]></category>

		<guid isPermaLink="false">http://www.mydoctor1on1.com/?p=148</guid>
		<description><![CDATA[by Gilles Frydman on April 2, 2010, from http://e-patients.net Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners. This new definition devised by the board of the Society of Participatory Medicine provides clarity [...]]]></description>
			<content:encoded><![CDATA[<div>by Gilles Frydman on April 2, 2010, from <a href="http://e-patients.net" target="_blank">http://e-patients.net</a></div>
<div>
<p><strong>Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.</strong></p>
<p>This new definition devised by the board of the Society of Participatory Medicine provides clarity for the movement. It is a paradigmatic shift and frames a view of medicine currently embraced only by a minority of patients and physicians. The mission of the SPM will focus entirely on advocacy, information, and tools to lead and accelerate change in the culture of health care to this participatory model.</p>
<p>We are essentially patient centric and <strong>all of our ideas are designed to optimize the care received by the patient</strong> at any time. Since a majority of care is done through self-help, participatory medicine is deeply involved in understanding, cataloging, and scientifically assessing the parameters of self-help and its impact on the medical system.<span id="more-5314"> </span></p>
<p><span id="more-148"></span>Recent posts on this blog have touched on the <a href="http://e-patients.net/archives/2010/03/patient-to-doctor-why-arent-you-harder-on-me.html">changing patient-doctor relationship</a> in the care process, and both the posts and comments reflect the tension elicited when the quasi sacrosanct role of the doctor is referenced.  Posters note how difficult it is to change how health professionals see the role of patients. And more than once I have seen conclusions that for most people the Internet does not replace doctors.</p>
<p>I personally never intended to replace my doctors, but for 21 years I’ve lived with the idea that we can be much better patients by becoming informed about our particular health issues. Once a medical problem has been identified, I rely on a combination of inputs from doctors, from high-quality, validated resources, and from the now-essential patient-driven online community.</p>
<p>The repeated reminders that we do not intend to replace doctors seem a bit apologetic, like we are children in need of asking forgiveness for our rambunctious behavior. I see this differently. If the system was not broken in the first place, and if we were not facing serious problems as outlined in the current healthcare debates, we would never have looked for solutions. Over-treatment.  Ever-changing recommendations from the medical gurus.  Pharma-influenced trial results.  We educated networkers have become proactive builders.</p>
<p>Now come Drs. Pamela Hartzband and Jerome Groopman (a highly respected doctor and author of books and articles about the modern practice of medicine, including the remarkable “<a href="http://www.jeromegroopman.com/how-doctors-think.html">How Doctors Think</a>”). They just published an opinion piece in NEJM entitled “<a href="http://content.nejm.org/cgi/content/full/362/12/1063">Untangling the Web — Patients, Doctors, and the Internet</a>.”  In it, they rightly note that “nothing has changed clinical practice more fundamentally than one recent innovation: the Internet. Its profound effects derive from the fact that while previous technologies have been fully under doctors’ control, the Internet is equally in the hands of patients. Such access is redefining the roles of physician and patient.”</p>
<p>With that, Dr. Groopman should immediately embrace the nascent Society for Participatory Medicine (<a href="http://participatorymedicine.org/join-us/">join here</a>). His introduction confirms our definition of PM, as we put networking (in its most robust implementation, the Internet) as the accelerant of medicine toward a more participatory model.</p>
<p>In our definition, participation refers to the active involvement of the patient in all aspects of their care. This transformation of the role of modern patients, and their vastly increased use of social media, is already starting to influence all of medicine, from the patient-doctor relationship to data collection, knowledge building and sharing, and even <a href="http://jopm.org/index.php/jpm/article/view/28/18">clinical research</a>. Dr. Groopman is correct. <strong>The Internet is shifting control across the spectrum.</strong></p>
<p>However, I was saddened to see that his opinion piece shows one more time that many doctors remain uncomfortable about rebalancing the control to a more transparent system built on mutual respect among all parties.  A litany of horror stories is described, each based on the misuse of  Internet-mediated health resources by uneducated patients, unable to make sense of what is presented to them on the Internet or even worse, suffering from la maladie du petit papier.</p>
<blockquote><p>Other patients whose diseases have no ready cure are drawn to chat rooms and Web sites that may make <strong>unsubstantiated claims </strong>—[…] Falsehoods are easily and rapidly propagated on the Internet […]. Material is perceived as factual merely because it is on a computer screen. We sometimes find ourselves in the uncomfortable position of trying to dissuade desperate and vulnerable patients from believing false testimonials. <strong>Doctors may be perceived as closed-minded, dismissive, or ignorant of “novel therapies”</strong> when they challenge such Internet rumors.</p></blockquote>
<p>What is remarkable in Dr. Groopman’s paper is that there is no examination of the positive aspects of the growing number of informed, activated, and engaged networked patients.  As the founder of the only really large system of medical online communities dealing with cancer (<a href="http://acor.org/">ACOR</a>), I can testify that his characterization quoted above is naïve and damaging to the cause of improved patient care. Far from seeing unsubstantiated claims and falsehoods easily propagated, I’ve witnessed how educated people can research medical and scientific information, and apply it to their own highly personal affliction(s).</p>
<p>Just as patients must learn to sift through the plethora of content to find what’s meaningful to their well being, so doctors must learn to critically elicit, examine and explore their patients’ knowledge, which will often be unique to their condition and not spelled out in practice guidelines and RTCs.  <strong>Without such respectful discourse, the tremendous potential value of the information age combined with social networking will be lost on the practice of medicine.</strong></p>
<p>It is the task of the SPM, in addition to providing evidence that participatory medicine can improve outcomes, to build resources that will educate providers as well as patients on effective models of participation. This transformation of medicine is profound and will take time and training, trial and error. Only a minority of Internet users and patients are educated to the degree that they can be ready and willing partners of health care professionals. And only a minority of physicians really grasp the game-changing potential of educated patients.  It is encouraging that curricula in many medical schools, as well as medical librarians, are already embracing their role as partners in the expansion of the PM movement.</p>
<p>Trying to replace doctors in all clinical encounters would be self-defeating. On the contrary, we are here to augment that interaction which has been subjected to tremendous abuse over the last 30 years. <strong>It is time to move on in our conversations</strong>.</p>
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<div>Gilles Frydman is the newly elected President of the Society for Participatory Medicine. He is a pioneer of medical online communities and founder, in 1995, of the Association of Cancer Online Resources (ACOR), the largest online social network for cancer patients. <a href="http://acor.org/">ACOR</a> has served over 1/2 million cancer patients and caregivers.</div>

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