<?xml version="1.0" encoding="UTF-8"?>
<rss version="2.0"
	xmlns:content="http://purl.org/rss/1.0/modules/content/"
	xmlns:wfw="http://wellformedweb.org/CommentAPI/"
	xmlns:dc="http://purl.org/dc/elements/1.1/"
	xmlns:atom="http://www.w3.org/2005/Atom"
	xmlns:sy="http://purl.org/rss/1.0/modules/syndication/"
	xmlns:slash="http://purl.org/rss/1.0/modules/slash/"
	>

<channel>
	<title>DCPatient &#187; General</title>
	<atom:link href="http://www.DCPatient.us/category/general/feed/" rel="self" type="application/rss+xml" />
	<link>http://www.DCPatient.us</link>
	<description>An Impatient Patient&#039;s Perspective on Health Care Today blogged live from Washington DC</description>
	<lastBuildDate>Mon, 23 Jan 2012 14:41:46 +0000</lastBuildDate>
	<language>en</language>
	<sy:updatePeriod>hourly</sy:updatePeriod>
	<sy:updateFrequency>1</sy:updateFrequency>
	<generator>http://wordpress.org/?v=3.3.1</generator>
		<item>
		<title>Research Literacy and the Democratization of Data</title>
		<link>http://www.DCPatient.us/2012/01/research-literacy-and-the-democratization-of-data/</link>
		<comments>http://www.DCPatient.us/2012/01/research-literacy-and-the-democratization-of-data/#comments</comments>
		<pubDate>Tue, 17 Jan 2012 13:12:19 +0000</pubDate>
		<dc:creator>DCPatient</dc:creator>
				<category><![CDATA[Doctor-Patient Interactions]]></category>
		<category><![CDATA[General]]></category>
		<category><![CDATA[HIT]]></category>
		<category><![CDATA[Research]]></category>
		<category><![CDATA[patient engagement]]></category>
		<category><![CDATA[PCORI]]></category>
		<category><![CDATA[research]]></category>
		<category><![CDATA[research literacy]]></category>

		<guid isPermaLink="false">http://www.DCPatient.us/?p=381</guid>
		<description><![CDATA[Patients and caregivers would be well served to gain research literacy – an understanding of the mathematical and scientific terminology and tools fostering the ability to interpret and apply medical information and the clinical study process that produces that information. ]]></description>
			<content:encoded><![CDATA[<div class="tweetmeme_button" style="float: right; margin-left: 10px;">
			<a href="http://api.tweetmeme.com/share?url=http%3A%2F%2Fwww.DCPatient.us%2F2012%2F01%2Fresearch-literacy-and-the-democratization-of-data%2F"><br />
				<img src="http://api.tweetmeme.com/imagebutton.gif?url=http%3A%2F%2Fwww.DCPatient.us%2F2012%2F01%2Fresearch-literacy-and-the-democratization-of-data%2F&amp;source=dcpatient&amp;style=normal&amp;b=2" height="61" width="50" /><br />
			</a>
		</div>
<p>In last week&#8217;s post, <a title="New Year’s Resolutions for E-patients" href="http://www.DCPatient.us/2012/01/new-year%e2%80%99s-resolutions-for-e-patients/">New Year&#8217;s Resolutions for E-patients</a>, I used the term research literacy.  Go ahead. Google it. “research literacy”  I’ll wait.</p>
<p>What did you find?  Nothing. Exactly. Your heard it here first folks. A new concept for a new year.</p>
<p>As a long-time Star Trek Fan (Original, Next Generation, Deep Space Nine, even-numbered movies) I had believed that space was the final frontier.  In patient engagement, however, I have come to believe that in fact the final frontier is research.</p>
<p>From Patients Like Me impromptu <a title="Patients Like Me Research" href="http://www.patientslikeme.com/research" target="_blank">lithium studies</a> to reviewing grants for the <a title="PCORI" href="http://www.pcori.org/patient-centered-outcomes-research/" target="_blank">Patient Centered Outcomes Research Institute (PCORI)</a>, patients are acting on pent-up desires to engage in research as other than mere subjects.</p>
<p>Although there is greater acceptance by physician, health system, and academic communities that patient engagement is desirable and likely to improve outcomes on an individual and population health basis, there still exists skepticism to the point of incredulousness that patients could, let alone, should, have a role in research other than as subjects.</p>
<p>Patient engagement for a large segment of the healthcare system equates to compliance, or if they are being politically correct, adherence.  Engagement, to them, means participation to the degree that we are able to do what the doctor has told us to do correctly.  However, just as children do not stop growing at that adorable toddler phase, patients are maturing as well in the types of questions we ask and the roles we would assume.</p>
<p>One of those roles for many patients, particularly those with chronic and/or rare diseases, is the development of research questions, queries about analysis and applicability of existing data or recommendations for studies that answer questions based on their own experiences and areas of emphasis.</p>
<p>There are numerous instances of patients or parents/caregivers starting foundations or companies for that matter to jumpstart the discovery and development of cures or even advocacy organizations like Faster Cures which has a robust track record of innovation and collaboration, but aside from the work of a limited number of advocacy organizations confined primarily to specific disease states, (<a title="The Advocate Institute" href="http://www.researchadvocacy.org/index.php?/advocate-institute/)" target="_blank">Advocate Institute</a>), no one teaches the average patient how research is conducted or provides an opportunity to become a researcher.</p>
<p>A great deal of the resistance by the research community to patient engagement in this arena is the inability of most patients to “speak the language”.  Just as in Stage 1 of Meaningful Use patients were dismissed when they weren’t able to answer questions such as “Are you in favor of meta-tagging of data?”, patients without backgrounds in biostatistics, study design, and epidemiology are considered to have nothing to offer to the field.</p>
<p>Learning the lessons of Stage 1 Meaningful Use of Health Information Technology, which has progressed to a burgeoning consumer engagement phase and active mhealth community, I propose a two-fold solution:</p>
<p>(1) Patients and caregivers would be well served to gain research literacy – an understanding of the mathematical and scientific terminology and tools fostering the ability to interpret and apply medical information and the clinical study process that produces that information.  (If that sounds daunting or unreasonable, figure that if nothing else, the ability to differentiate absolute from relative risk will stand you in good stead every time you read the morning paper and see a screaming headline that states drinking coffee increases your risk of death 800%)</p>
<p>(2) Researchers need to develop the right questions to facilitate the translation by patients of their experience into research terms and frameworks.  Just as “Are you in favor of meta-tagging of data?” evolved into “What do you want an electronic medical record to do?”, the clinical research community would benefit (in better targeted studies, faster recruitment, better retention, and increased adoption of interventions) from meeting patients where they are.</p>
<p><a title="PCORI" href="http://www.pcori.org/patient-centered-outcomes-research/" target="_blank">PCORI</a> is charged specifically with identifying and developing mechanisms for patient engagement in comparative effectiveness research.  It is potentially transformational in defining research in a manner that is “informed by the perspectives, interests and values of patients throughout the research process, from the selection of research questions to the dissemination of research results.”  It is my hope that PCORI and others begin providing patients with the training and tools to make high-quality contributions to research and motivation to physicians to set another chair at the table.</p>
]]></content:encoded>
			<wfw:commentRss>http://www.DCPatient.us/2012/01/research-literacy-and-the-democratization-of-data/feed/</wfw:commentRss>
		<slash:comments>3</slash:comments>
		</item>
		<item>
		<title>New Year’s Resolutions for E-patients</title>
		<link>http://www.DCPatient.us/2012/01/new-year%e2%80%99s-resolutions-for-e-patients/</link>
		<comments>http://www.DCPatient.us/2012/01/new-year%e2%80%99s-resolutions-for-e-patients/#comments</comments>
		<pubDate>Wed, 11 Jan 2012 16:33:44 +0000</pubDate>
		<dc:creator>DCPatient</dc:creator>
				<category><![CDATA[Doctor-Patient Interactions]]></category>
		<category><![CDATA[General]]></category>
		<category><![CDATA[Healthcare Reform]]></category>
		<category><![CDATA[e-patient]]></category>
		<category><![CDATA[New Year's resolution]]></category>
		<category><![CDATA[patient advocate]]></category>

		<guid isPermaLink="false">http://www.DCPatient.us/?p=377</guid>
		<description><![CDATA[What resolutions have we made to be better e-patient advocates?]]></description>
			<content:encoded><![CDATA[<div class="tweetmeme_button" style="float: right; margin-left: 10px;">
			<a href="http://api.tweetmeme.com/share?url=http%3A%2F%2Fwww.DCPatient.us%2F2012%2F01%2Fnew-year%25e2%2580%2599s-resolutions-for-e-patients%2F"><br />
				<img src="http://api.tweetmeme.com/imagebutton.gif?url=http%3A%2F%2Fwww.DCPatient.us%2F2012%2F01%2Fnew-year%25e2%2580%2599s-resolutions-for-e-patients%2F&amp;source=dcpatient&amp;style=normal&amp;b=2" height="61" width="50" /><br />
			</a>
		</div>
<p>By this point in January we are all wearing our <a title="FitBit" href="http://www.fitbit.com/" target="_blank">Fitbits</a> and logging our every mouthful into <a title="Lose It!" href="http://www.loseit.com/" target="_blank">Lose It!</a>, but beyond our own quantified self, what resolutions have we made to be better e-patient advocates?  I propose and have made the following 3 resolutions and ask that you join with me or share with me your own.</p>
<p>In 2012 I resolve to:</p>
<ol>
<li>Courageously and persistently share my e-patient advocacy with my own care team and institution to support (i.e. insist upon) their adoption of new technology and the workflow changes necessary to partner with engaged patients.  (The e-patient version of think global, act local.)</li>
<li> Improve my research literacy (more in next week’s post) – my facility with the terminology, methodologies, and mathematics required to converse with the scientific community and interpret medical information.</li>
<li>  Schedule time to proactively mentor other emerging e-patients (as well as spend time with my e-patient mentors).  Congratulations to all on the <a title="Top 10 Healthcare Influencers" href="http://www.turnupyourvolume.com/2012/01/06/top-healthcare-influencers-to-follow/" target="_blank">Top 10 Healthcare Influencers to Follow</a> List.</li>
</ol>
<p>Here’s to you being not only more active in 2012, but more actively engaged!</p>
<p>Think of Joining the <a title="The Society for Participatory Medicine" href="http://participatorymedicine.org/" target="_blank">Society for Participatory Medicine</a>. @S4PM</p>
]]></content:encoded>
			<wfw:commentRss>http://www.DCPatient.us/2012/01/new-year%e2%80%99s-resolutions-for-e-patients/feed/</wfw:commentRss>
		<slash:comments>1</slash:comments>
		</item>
		<item>
		<title>Beyond the ACO – Creating the Well-Being Society</title>
		<link>http://www.DCPatient.us/2011/09/beyond-the-aco-%e2%80%93-creating-the-well-being-society/</link>
		<comments>http://www.DCPatient.us/2011/09/beyond-the-aco-%e2%80%93-creating-the-well-being-society/#comments</comments>
		<pubDate>Thu, 08 Sep 2011 16:29:32 +0000</pubDate>
		<dc:creator>DCPatient</dc:creator>
				<category><![CDATA[General]]></category>
		<category><![CDATA[Healthcare Reform]]></category>
		<category><![CDATA[Wellness]]></category>

		<guid isPermaLink="false">http://www.DCPatient.us/?p=364</guid>
		<description><![CDATA[Next Century Health is a visionary initiative of the Adventist Healthcare System, a  large integrated  network of hospitals, rehab facilities, home health, and other health services, to respond to the key trends and drivers transforming healthcare today in something more than a pro forma fashion.]]></description>
			<content:encoded><![CDATA[<div class="tweetmeme_button" style="float: right; margin-left: 10px;">
			<a href="http://api.tweetmeme.com/share?url=http%3A%2F%2Fwww.DCPatient.us%2F2011%2F09%2Fbeyond-the-aco-%25e2%2580%2593-creating-the-well-being-society%2F"><br />
				<img src="http://api.tweetmeme.com/imagebutton.gif?url=http%3A%2F%2Fwww.DCPatient.us%2F2011%2F09%2Fbeyond-the-aco-%25e2%2580%2593-creating-the-well-being-society%2F&amp;source=dcpatient&amp;style=normal&amp;b=2" height="61" width="50" /><br />
			</a>
		</div>
<p>&nbsp;</p>
<p>I have spent the past two rainy days with senior executives from the Adventist Healthcare System and a range of integrative medicine and community leaders as part of an effort called <a title="Next Century Health" href="http://www.nextcenturyhealth.org/" target="_blank">Next Century Health</a>. Next Century Health is a visionary initiative of the Adventist Healthcare System, a  large integrated  network of hospitals, rehab facilities, home health, and other health services, to respond to the key trends and drivers transforming healthcare today in something more than a pro forma fashion.  I, along with such notables as former HHS Secretary Dr. Louis Sullivan, former FDA Commissioner Dr. David Kessler, and former Senator Dr. Bill Frist, are committed members of the <a title="Leadership Council" href="http://www.washingtonadventisthospital.com/WAH/vision/next-century-health/#NCH-Leadership-Council" target="_blank">Next Century Health Leadership Council.</a>  Below are 5 reasons I think that Next Century Health may actually achieve its ambitious goal of advancing <a title="Well Being" href="http://www.wbfinder.com/home.aspx" target="_blank">whole-person health</a> and healing across the greater community.</p>
<ol>
<li>It’s in their culture.  The Adventist HealthCare System has its roots in the Battlecreek, Michigan  health resort of Kellogg’s corn flakes fame.  It flourished with a focus on connected mind, body, and spirit for healing purposes.  Discussions of whole-person health and well-being are authentically part of their DNA as an organization.</li>
<li>They have a track record.  The five-year and counting <a title="Center for Health Disparities" href="http://www.adventisthealthcare.com/health-disparities/" target="_blank">Center for Health Disparities</a> established by Adventist is a create model of addressing tough issues, working with community leaders, and keeping long-term commitments.</li>
<li>Vision before bricks and mortar. The system has several large-scale building projects in the works, including a massive White Oak Campus adjacent to the FDA.  Integrating elements into every building and campus expansion plan that actively promote fitness, restoration, and connection from the start rather than as an afterthought greatly increases their chances of adoption and execution.</li>
<li>Partnership, Structure, and Sustainability.  The two days of discussion included very tactical and tangible planning for the best partnerships, structures, communication loops, and policies to sustain the effort for decades.  This could have been so easily just a PR opportunity, but the time commitment of the hospital and system presidents to a multi-hour roll-up-your-sleeves  brainstorming and options weighing lent a great deal of credibility.</li>
<li>Stewardship.  The second day of the Next Century Health meeting was a forum on Whole Person Health, Scientific Advancements &amp; Ending Obesity with panelists including former AARP CEO Bill Novelli and <a title="Partnership for a Healthier America" href="http://www.ahealthieramerica.org/#!/home" target="_blank">Partnership for a Healthier America</a> CEO Larry Soler.  A robust conversation on the root causes and potential solutions  (active, passive, and sanction-based) for the obesity crisis was held for several hours, but what impacted me most was the last comment of the morning, made by Dr. Alan Handysides, Director of the Department of Health Ministries, and a member of the Next Century Health Leadership Council, that core to the Adventist approach is the belief that stewardship of health has value.  From roots that strong a mighty tree can grow.</li>
</ol>
<p>Learn more about Next Century Health at <a href="http://www.nextcenturyhealth.org/">http://www.nextcenturyhealth.org/</a></p>
<p>&nbsp;</p>
]]></content:encoded>
			<wfw:commentRss>http://www.DCPatient.us/2011/09/beyond-the-aco-%e2%80%93-creating-the-well-being-society/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>Great Expectations</title>
		<link>http://www.DCPatient.us/2011/01/great-expectations/</link>
		<comments>http://www.DCPatient.us/2011/01/great-expectations/#comments</comments>
		<pubDate>Mon, 03 Jan 2011 14:44:58 +0000</pubDate>
		<dc:creator>DCPatient</dc:creator>
				<category><![CDATA[General]]></category>
		<category><![CDATA[e-patient]]></category>
		<category><![CDATA[epatient]]></category>

		<guid isPermaLink="false">http://www.DCPatient.us/?p=309</guid>
		<description><![CDATA[ My expectations of the healthcare system and the care I receive have been elevated. Now knowing what is possible in terms of team collaboration, information sharing, and operational efficiency I am ever more impatient for the reality of my care to rise to that ideal.]]></description>
			<content:encoded><![CDATA[<div class="tweetmeme_button" style="float: right; margin-left: 10px;">
			<a href="http://api.tweetmeme.com/share?url=http%3A%2F%2Fwww.DCPatient.us%2F2011%2F01%2Fgreat-expectations%2F"><br />
				<img src="http://api.tweetmeme.com/imagebutton.gif?url=http%3A%2F%2Fwww.DCPatient.us%2F2011%2F01%2Fgreat-expectations%2F&amp;source=dcpatient&amp;style=normal&amp;b=2" height="61" width="50" /><br />
			</a>
		</div>
<p>Happy New Year!</p>
<p>Nourished by time, quiet, and a flurry of emails on the new listserv for the <a href="http://participatorymedicine.org/">Society for Participatory Medicine</a>, the December holiday break allowed me to be thoughtful about everything that transpired in 2010 and what direction I felt called to take in 2011.</p>
<p>Highlights of the year include:</p>
<ul>
<li>@epatientdave embracing me as part of the epatient and participatory medicine movement, especially after we both spoke at the <a href="http://www.nlm.nih.gov/medlineplus/magazine/issues/sprsum10/articles/sprsuminsidecover.html">National Library of Medicine conference</a></li>
<li>@reginaholliday opening my mind by so well embodying the concept of bringing all your talents to the table and designing one’s own model advocacy</li>
<li>@trishatorrey for mentoring by modeling</li>
<li>@tedeytan for giving me the confidence to use my authentic voice</li>
<li>@lygeia for sharing the platform (literally and figuratively)</li>
<li>@clinovations for including me and @cryerhealth in your brilliant business vision</li>
<li>Attending the <a href="http://epatient2010.com/">E-patient Connections Conference</a> was like stepping through the looking glass uniting my virtual and physical worlds. I left forever changed.</li>
</ul>
<p>The new year is a perfect fulcrum for change.   Two particular changes stand out . . .</p>
<p>1.       I realize that it is impossible and perhaps not as desirable as I had originally thought to distinguish between my DCpatient (personal) and Donna Cryer (professional) personas. Each powers the other.</p>
<p>2.       My expectations of the healthcare system and the care I receive have been elevated. Now knowing what is possible in terms of team collaboration, information sharing, and operational efficiency I am ever more impatient for the reality of my care to rise to that ideal.</p>
<p>So I have great expectations in 2011 for working with all who read this to create the patient and family-centered wellness and healthcare delivery system of our imaginations.</p>
<p>Be well. Be joyful. Be Diligent. Be kind. And Believe.</p>
<p>Love,</p>
<p>DCpatient</p>
]]></content:encoded>
			<wfw:commentRss>http://www.DCPatient.us/2011/01/great-expectations/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>The Value of Innovation: The Case for Personalized Medicine</title>
		<link>http://www.DCPatient.us/2010/12/the-value-of-innovation-the-case-for-personalized-medicine/</link>
		<comments>http://www.DCPatient.us/2010/12/the-value-of-innovation-the-case-for-personalized-medicine/#comments</comments>
		<pubDate>Fri, 10 Dec 2010 14:30:52 +0000</pubDate>
		<dc:creator>DCPatient</dc:creator>
				<category><![CDATA[General]]></category>
		<category><![CDATA[Healthcare Reform]]></category>
		<category><![CDATA[genetic diagnostics]]></category>
		<category><![CDATA[innovation]]></category>
		<category><![CDATA[personalized medicine]]></category>
		<category><![CDATA[reimbursement]]></category>

		<guid isPermaLink="false">http://www.DCPatient.us/?p=297</guid>
		<description><![CDATA[The value of personalized medicine is best perceived using a systems view of cost and experience across identification, diagnosis, and treatment of a disease.  Imagine oncology today without personalized medicine. ]]></description>
			<content:encoded><![CDATA[<div class="tweetmeme_button" style="float: right; margin-left: 10px;">
			<a href="http://api.tweetmeme.com/share?url=http%3A%2F%2Fwww.DCPatient.us%2F2010%2F12%2Fthe-value-of-innovation-the-case-for-personalized-medicine%2F"><br />
				<img src="http://api.tweetmeme.com/imagebutton.gif?url=http%3A%2F%2Fwww.DCPatient.us%2F2010%2F12%2Fthe-value-of-innovation-the-case-for-personalized-medicine%2F&amp;source=dcpatient&amp;style=normal&amp;b=2" height="61" width="50" /><br />
			</a>
		</div>
<p><em><strong>This post was 1st featured on the <a href="http://www.disruptivewomen.net/2010/12/09/the-value-of-innovation-my-case-for-personalized-medicine/">Disruptive Women in Health Care</a> blog and will be part of an upcoming e-book on Innovation.</strong></em></p>
<p>There are countless articles and books on innovation – incremental innovation, radical innovation, disruptive innovation.   However, I would argue that, with a nod to the authors of <a href="http://www.blueoceanstrategy.com/">Blue Ocean Strategy</a>, that unless innovation is value innovation, providing some deliberate and distinguished combination of factors or service to improve the experience or effectiveness for relevant stakeholders while reducing costs it is not innovation at all, but simply something new.</p>
<p>That said, the case for personalized medicine as a value innovation, a valuable innovation, is one I am eager to make. The most common definition of personalized medicine is genomic-based risk assessment, diagnosis, treatment.  Personalized medicine broadly construed also comprises technology-supported medical practice able to aggregate data on a population level to a degree that positive or adverse outcomes can be spotted in sub-populations of patients, and patient-centered medical practice that provides care in the context of an individual’s culture, values, and health literacy levels.  The uniting concept is a healthcare framework that gets the right treatment for the right patient at the right time, creating a safer, more effective, more cost-efficient healthcare system.  Think of personalized medicine as producing Me drugs rather than Me-too drugs.</p>
<p>The value of personalized medicine is best perceived using a systems view of cost and experience across identification, diagnosis, and treatment of a disease.  Imagine oncology today without personalized medicine.  A woman would not know at a young age that she has a genetic predisposition to a cancer, despite no family history that would raise no red flags. She and her physician do not start an early or aggressive schedule of mammography or other screening. A lump in her early 30s is dismissed. When she does develop cancer, there is no way of determining what type of specific cancer, she is given a treatment that she does not respond to, other treatments are attempted, but ultimately she dies.  The cost of her care is needlessly expensive and the clinical outcome is tragic.</p>
<p>The reason that that does not happen today, at least for certain cancers and other conditions is that a financial and regulatory system supported the development and access to early personalized medicine products. The greatest threat to continued value innovation in personalized medicine is lack of a coherent financial and regulatory framework that recognizes the value of the genomic-based diagnostics and therapies and reimburses appropriately.</p>
<p>A personal example – as a liver transplant I have blood analysis done several times a year to review my liver enzymes, levels of medication, and other markers. Recently, my physician and I have added a test called Immuknow® that provides an assessment of my immune system’s individualized response to the immunosuppressive medications prescribed.    This test gave unique information that despite my dosage, my immune system was still very active putting me at possible risk for rejection of my organ.  Where traditional tests would have led to reduction of my immunosuppression given my apparent stability using traditional tests, the personalized test compelled a different treatment decision. Without this test it was likely that, as in the past, I (and my insurance company) would have incurred tens of thousands of dollars for liver biopsy; greatly increased dosages and numbers of medications usually delivered by IV not orally; hospitalization; and in extreme but foreseeable possibility, rejection or retransplantation which would put the figure then in the hundreds of thousands.  Avoidable for about $600.</p>
<p>Immuknow® is FDA-cleared to be conducted in a complex manner to produce clinically valid results, yet current CMS determinations under the constraints of the laboratory fee schedule processes of cross walks, gap fills, or code-stacking, basically attempts to match new technology to old payment systems, have resulted in a level of reimbursement that does not even cover the costs of performing the test correctly, let alone reflecting its value.  The likely consequence is that hospitals will stop performing the test in an environment where they lose money each time they perform it, and patients and physicians will lose access to this test and the important clinical decision support it provides.</p>
<p>The Bible warns against pouring new wine into old wineskins as unworkable.  Our current system for determining the reimbursement for personalized therapies is just as unsustainable.</p>
<p>Resource: <a href="http://www.personalizedmedicinecoalition.org/">The Personalized Medicine Coalition</a></p>
]]></content:encoded>
			<wfw:commentRss>http://www.DCPatient.us/2010/12/the-value-of-innovation-the-case-for-personalized-medicine/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>Healthcare Productivity – Valuing Patients&#8217; Time</title>
		<link>http://www.DCPatient.us/2010/11/healthcare-productivity-%e2%80%93-valuing-patients-time/</link>
		<comments>http://www.DCPatient.us/2010/11/healthcare-productivity-%e2%80%93-valuing-patients-time/#comments</comments>
		<pubDate>Mon, 22 Nov 2010 20:37:06 +0000</pubDate>
		<dc:creator>DCPatient</dc:creator>
				<category><![CDATA[Doctor-Patient Interactions]]></category>
		<category><![CDATA[General]]></category>
		<category><![CDATA[appointment scheduling]]></category>
		<category><![CDATA[Georgetown]]></category>
		<category><![CDATA[patient]]></category>
		<category><![CDATA[time]]></category>

		<guid isPermaLink="false">http://www.DCPatient.us/?p=293</guid>
		<description><![CDATA[There is much abuzz for the past few months on how HIT can improve hospital workflow and healthcare practitioner productivity. Never once have I heard anyone speak about trying to improve patient productivity. But I guess no one ever considered that my time and those of other patients is valuable.]]></description>
			<content:encoded><![CDATA[<div class="tweetmeme_button" style="float: right; margin-left: 10px;">
			<a href="http://api.tweetmeme.com/share?url=http%3A%2F%2Fwww.DCPatient.us%2F2010%2F11%2Fhealthcare-productivity-%25e2%2580%2593-valuing-patients-time%2F"><br />
				<img src="http://api.tweetmeme.com/imagebutton.gif?url=http%3A%2F%2Fwww.DCPatient.us%2F2010%2F11%2Fhealthcare-productivity-%25e2%2580%2593-valuing-patients-time%2F&amp;source=dcpatient&amp;style=normal&amp;b=2" height="61" width="50" /><br />
			</a>
		</div>
<p>I write this as I sit on hold for now going on 1:05:50 hours trying to schedule an MRI at Georgetown Hospital.  Yes, I named names. I usually don’t.  But the list of offenses against patientdom by Georgetown now runs so long my head might pop off. They clearly do not value patients time. If I did not need to be seen by an academic medical center, specifically, one with a transplant center, I would be so out of here.</p>
<p>There is much abuzz for the past few months on how HIT can improve hospital workflow and healthcare practitioner productivity. Never once have I heard anyone speak about trying to improve patient productivity. But I guess no one ever considered that my time and those of other patients is valuable.</p>
<p>Let’s consider just this one test.</p>
<p>1.       I was mailed one slip of paper a week after I spoke with my physician&#8211; a universal test requisition form. No instructions on how to schedule, when to schedule, where to go, preparation instructions, anything.</p>
<p>2.        I had to call my doctor’s office and request this practical information. On hold only 3 minutes that time.</p>
<p>3.       I call to schedule an appointment. So far this is 1:14:26 and counting.</p>
<p>4.       Assuming I get an appointment (big assumption), I know I need to allow extra time to park because the current parking is woefully inadequate.</p>
<p>(<strong>note as I was wrapping up I was finally connected 1:28:44 – no apology. 1<sup>st</sup> dates/times given were incorrect because of the type of test I need. Then offered 12/21 date – forget egg nog, pass the contrast. So my test ordered 10/29/10 will not be done until 1/10/11. And I have to get renal function tests beforehand – I know what they are for, but no explanation was offered)</strong></p>
<p>5.       There is the wait for the test, usually no relationship to actual appointment time.</p>
<p>6.       I have never yet gotten non –ER lab or other test results back in less than 2 weeks.  Often I have to be proactive about tracking them down with my doctor.</p>
<p>7.       Then I guess we start all over again for whatever treatment is necessary.</p>
<p>By my calculations this will take at least 8 hours of my time not counting the meditation time it will take to recover from the frustration. A full work day&#8217;s worth of effort for just one test. Multiply this by millions of patients. Can our economy afford this?</p>
<p>What if:</p>
<p>1.       My doctor’s office (at this same institution mind you) scheduled the appointment for me or could point me to online scheduling options.</p>
<p>2.       Directions, instructions, etc were available online and downloadable.</p>
<p>3.       Any prerequisite tests would be ordered automatically or at least an alert sent up to my doctor that she needs to write an order.</p>
<p>4.       MRI results were available promptly and accessible through a patient portal.</p>
<p>5.       A follow up call or visit was automatically requested/scheduled prompted by the MRI results.</p>
<p>If I hung up I would be labeled a non-compliant patient, not following up on my doctor’s instructions, a bad patient.  What responsibility does the institution have to make healthcare work?</p>
<p>1:39:45 hours</p>
]]></content:encoded>
			<wfw:commentRss>http://www.DCPatient.us/2010/11/healthcare-productivity-%e2%80%93-valuing-patients-time/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
		<item>
		<title>Consumers v Patients</title>
		<link>http://www.DCPatient.us/2010/11/consumers-v-patients/</link>
		<comments>http://www.DCPatient.us/2010/11/consumers-v-patients/#comments</comments>
		<pubDate>Mon, 01 Nov 2010 22:05:50 +0000</pubDate>
		<dc:creator>DCPatient</dc:creator>
				<category><![CDATA[General]]></category>
		<category><![CDATA[Healthcare Reform]]></category>
		<category><![CDATA[Consumer]]></category>
		<category><![CDATA[patient]]></category>

		<guid isPermaLink="false">http://www.DCPatient.us/?p=282</guid>
		<description><![CDATA[Too often I see the few seats at the table begrudgingly opened to non-physician or non-academician or non-corporate  parties are filled by labor unions, general consumer groups, and organizations whose average members may not have visited a doctor in years.]]></description>
			<content:encoded><![CDATA[<div class="tweetmeme_button" style="float: right; margin-left: 10px;">
			<a href="http://api.tweetmeme.com/share?url=http%3A%2F%2Fwww.DCPatient.us%2F2010%2F11%2Fconsumers-v-patients%2F"><br />
				<img src="http://api.tweetmeme.com/imagebutton.gif?url=http%3A%2F%2Fwww.DCPatient.us%2F2010%2F11%2Fconsumers-v-patients%2F&amp;source=dcpatient&amp;style=normal&amp;b=2" height="61" width="50" /><br />
			</a>
		</div>
<p>Although often use interchangeably, there are distinctive differences between consumers and patients in the context of healthcare.  Much is made of what to call those of us actively engaged in pursuing and receiving medical care from health professionals and this post does not intend to settle that issue, but after reviewing countless new conferences, pieces of legislation or regulation, coalitions, job titles, and  grant opportunities,  I’ve discerned a shift towards using consumers as the catch-all term to describe what are actually segments with different experiences, needs, views, and behaviors within the healthcare system.  Too often I see the few seats at the table begrudgingly opened to non-physician or non-academician or non-corporate  parties are filled by labor unions, general consumer groups, and organizations whose average members may not have visited a doctor in years. Organizers, though, feel satisfied in checking off the patient representation box.</p>
<p>Consumers, in my personal dictionary, are members of the general public. Consumers may be perfectly healthy (or think they are) with little contact, or desire to be in contact with the medical system.  The term consumer is also associated with rational nonurgent cost and feature comparison activities demonstrated in other industries with more transparent information sharing.</p>
<p>Patients, acute patients for the purposes of this post, are people with some illness or injury necessitating an interaction with the healthcare system.  They are not electively consuming goods or resources, but trying to secure the more effective treatment with the least amount of pain, time, and cost (if there is a choice or information). Their experience with clinical settings and information may be short-lived and soon forgotten.  If there was no error or incidence involved patients may return to their lives without having been significantly shaped or changed.</p>
<p>Patient Warriors, those patients with chronic diseases, diseases that are potentially terminal or that leave life-changing and to whatever degree life-defining marks (visible or invisible), offer something fundamentally different to the conversation.  Experience over 2 decades with 3 conditions at 4 institutions with 5(to the nth power) physicians, nurses, fellows, medical students, and techs is quantitatively and qualitatively richer than that of an acute patient or a consumer.  Their cost calculations are too often, should I buy food or medicine? should I bankrupt my family or save my life? should I pay these medical bills or my mortgage?</p>
<p>There is a great need from a population health perspective to reach all three segments but the approaches and expectations of each should be varied.  Moreover, than cannot be substituted for one another for research, policymaking, or other purposes.</p>
<p>Consider these questions:</p>
<p>Do consumers want access to their personal health records?</p>
<p>What role do patients want to play as part of their healthcare team?</p>
<p>Can patients be experts?</p>
<p>What is the consumer perspective on comparative effectiveness research?</p>
<p>These questions are almost meaningless as asked.  Consumers may not care one whit about access to a personal health record, but it may mean life and death to a patient warrior.  Patients (subject to individual preference and temperament) may want to be informed while a Patient Warrior may want to be perceived as a full partner or have endured for so long they just want the key decisions while they maintain a positive mindset.  Patients may not be interested in becoming an expert. Patient warriors (often E-patients) may spend hundreds or thousands of hours reading, attending medical conferences, questioning other patients and physicians.  Consumers may consider comparative effectiveness research as commonsensical as having Consumer Reports for other products and look forward to cost-savings.  A patient or patient warrior may be skeptical that a personalized treatment option may be made inaccessible to them.</p>
<p>Extent of interaction with the healthcare system and impact of health issues on someone’s life are the defining factors in determining these population segments.  If we really are to solve the myriad of challenges affecting healthcare we can’t afford to be lazy in our language or our thinking about ensuring that all stakeholders are truly considered and engaged appropriately.</p>
]]></content:encoded>
			<wfw:commentRss>http://www.DCPatient.us/2010/11/consumers-v-patients/feed/</wfw:commentRss>
		<slash:comments>14</slash:comments>
		</item>
		<item>
		<title>Patient ID</title>
		<link>http://www.DCPatient.us/2010/10/patient-id/</link>
		<comments>http://www.DCPatient.us/2010/10/patient-id/#comments</comments>
		<pubDate>Mon, 18 Oct 2010 17:10:56 +0000</pubDate>
		<dc:creator>DCPatient</dc:creator>
				<category><![CDATA[General]]></category>
		<category><![CDATA[e-patient]]></category>
		<category><![CDATA[patient]]></category>
		<category><![CDATA[patient privacy]]></category>

		<guid isPermaLink="false">http://www.DCPatient.us/?p=278</guid>
		<description><![CDATA[Yesterday, I redrafted my professional bio to include the words “a liver transplant recipient”. There that designation sits next to my Harvard education and Bar association membership. Wearing my patient identification publicly consistently may take more courage that the daily private struggle of living with my conditions.]]></description>
			<content:encoded><![CDATA[<div class="tweetmeme_button" style="float: right; margin-left: 10px;">
			<a href="http://api.tweetmeme.com/share?url=http%3A%2F%2Fwww.DCPatient.us%2F2010%2F10%2Fpatient-id%2F"><br />
				<img src="http://api.tweetmeme.com/imagebutton.gif?url=http%3A%2F%2Fwww.DCPatient.us%2F2010%2F10%2Fpatient-id%2F&amp;source=dcpatient&amp;style=normal&amp;b=2" height="61" width="50" /><br />
			</a>
		</div>
<p>Almost everyone is familiar with the paper bracelet that hospitals put on people to mark the change in their status to that of a patient.  The bracelet identifies the name, age, admitting physician, and often now includes a barcode with additional data that confirms the medical condition, authorized procedures, and medications.  As someone who, if I kept them all, would possess enough hospital patient ID bracelets to make into a garland for a Christmas tree of robust circumference, I can’t wait to gnaw, snip, slip, or cut off that bracelet as soon as I leave the view of the discharge nurse.<br />
I realize that others can not so easily shed their patient identity. Their injuries or disabilities, temporary or permanent, continue to identify them instantly to the world as patients, evoking sympathy, empathy, pity, or simply unwanted attention.  I’ve never wanted anyone to pity me, make exceptions, or deny me opportunities that I knew I could manage, simply because of perceived limitations.  However, as an adult with a long track record of successfully overcoming the physical and emotional challenges of balancing chronic disease with school, work, life, I’ve started to question why I feel the need to escape or hide from the fact that I live with chronic and sometimes acute health conditions.<br />
Three short vignettes from the past few weeks may help explore this evolution in my patient identification:<br />
<strong>1.	No blood from my hands</strong><br />
I don’t allow anyone to stick my hands with needles to take blood. I’ve had periods of my life that have necessitated repeated blood draws and IV insertions over the course of days, weeks, or even months. Add a few years on prednisone, a dash of dehydration and I have become what’s called in the trade “a hard stick”.  Often the usual spot on the inside of my elbow is uncooperative and the tech, nurse, or phlebotomist starts looking at my hands.  Recently in the hospital after explaining for the 3rd time that I don’t allow blood to be taken from my hands, I started to cry.  The nurse stopped and gave me the opportunity to explain that my hands are the one unviolated spot on my body after years of medical treatments. They were unscarred.  Frankly, I have beautiful hands, manicured hands, long fingers made to play the piano or show off fancy rings. When I left the hospital, I could take off the hospital gown, bracelet,  put on long sleeves, and appear again as a “normal” person, a healthy person. I got to be in charge of when I revealed my patient status.  If my hands were as bruised, bandaged, or scarred as the rest of me there was no hiding, not even from myself.</p>
<p><strong>2.	Donna Cryer – Liver Disease</strong><br />
Picking up my name badge at the registration desk at a workshop for patient representatives for the FDA I was a bit taken aback when I saw that it read Donna Cryer/Liver Disease.  I understood the purpose of the identification to help us understand and interact with the other patient reps, but in all the hundreds of events I’ve attended, most on healthcare topics, I’ve never been literally labeled by my disease. Of course in this setting, I expected to be disclosing my conditions early and often, but it was no longer my choice in how I presented myself. Contrast with a visit to my doctor’s new office where the staff mistook me for a drug rep.  What greater confirmation of polish and perkiness that that! It might have also spoken to the volume of my medical records I was toting that may have been mistaken for a same case, but I digress  . . .</p>
<p><strong>3.	DCpatient/Donna Cryer</strong><br />
My business manager made me tweet. Let me explain, I am a lawyer, not only by education or training, but by essential temperament.  Social media, self-disclosure, does not come naturally to me.  In being pushed to blog, I thought, let me start with Twitter, 140 characters of opinion at a time. Also, rather than Tweet as Donna Cryer, JD, I would create an alterego, DCpatient, my patient identity. This blog quickly followed, but still I had this naïve attitude that I could keep these identities, these worlds, separate. How separate they could ever be since I run a healthcare consulting firm focused on advancing patient issues and perspectives? Still, color me surprised the first time someone recognized me as DCPatient while at an evening event with clients.  After the E-Patient Conference in Philadelphia, most everyone was using my “real” name and my “patient” name interchangeably.  The firewall was broken.</p>
<p>Yesterday, I redrafted my professional bio to include the words “a liver transplant recipient”. There that designation sits next to my Harvard education and Bar association membership.   Wearing my patient identification publicly consistently may take more courage that the daily private struggle of living with my conditions.</p>
]]></content:encoded>
			<wfw:commentRss>http://www.DCPatient.us/2010/10/patient-id/feed/</wfw:commentRss>
		<slash:comments>3</slash:comments>
		</item>
		<item>
		<title>Why I Chose A Concierge Medicine Practice</title>
		<link>http://www.DCPatient.us/2010/08/why-i-chose-a-concierge-medicine-practice/</link>
		<comments>http://www.DCPatient.us/2010/08/why-i-chose-a-concierge-medicine-practice/#comments</comments>
		<pubDate>Wed, 18 Aug 2010 22:06:52 +0000</pubDate>
		<dc:creator>DCPatient</dc:creator>
				<category><![CDATA[Doctor-Patient Interactions]]></category>
		<category><![CDATA[General]]></category>
		<category><![CDATA[Healthcare Reform]]></category>
		<category><![CDATA[concierge medicine]]></category>
		<category><![CDATA[MDVIP]]></category>
		<category><![CDATA[primary care]]></category>

		<guid isPermaLink="false">http://www.DCPatient.us/?p=259</guid>
		<description><![CDATA[Today I made the plunge and signed up for MDVIP, a so-called concierge or boutique medical practice.  What drove me to that decision? ]]></description>
			<content:encoded><![CDATA[<div class="tweetmeme_button" style="float: right; margin-left: 10px;">
			<a href="http://api.tweetmeme.com/share?url=http%3A%2F%2Fwww.DCPatient.us%2F2010%2F08%2Fwhy-i-chose-a-concierge-medicine-practice%2F"><br />
				<img src="http://api.tweetmeme.com/imagebutton.gif?url=http%3A%2F%2Fwww.DCPatient.us%2F2010%2F08%2Fwhy-i-chose-a-concierge-medicine-practice%2F&amp;source=dcpatient&amp;style=normal&amp;b=2" height="61" width="50" /><br />
			</a>
		</div>
<p>I finally did it. Today I made the plunge and signed up for MDVIP, a so-called concierge or boutique medical practice.  What drove me to that decision?  Several factors.  Becoming a more empowered patient, a more informed patient, I grew increasingly aware of the promise and potential of medicine practiced in a patient-centered fashion.  Also, as a busy person the time spent in doctors’ offices and the time I was spending tracking down results and coordinating my care was more than I felt I should have to give to the process.  When I went to schedule my last primary care visit and was given a date 3 months away I cracked.  Straw meet camel’s back.</p>
<p>Now I can’t go without a primary care physician and with my cavalcade of conditions not just anyone would do.  What were my choices? (1) Find another primary care physician who wasn’t, like my PCP, overbooked with patients and undersupported by technology; (2) Pay $2000 for an Executive Health Screening (at the same academic medical center no less) that offered convenient scheduling of a full day of all the tests and examinations I needed but still left me without a longterm relationship with a primary care physician; or (3) sign up with an MDVIP physician who, due to a strategically limited caseload of patients at $1500 a pop could offer the holy grail of true access.  Access to a timely appointment, access to the doctor without waiting hours, access by email, and by phone in a timely matter, access to my health records and lab records.</p>
<p>Some may criticize me joining such a practice, akin to putting my kids in private school if I live in a bad school district instead of becoming head of the PTA.  As the daughter of schoolteachers who gave a combined 72 years to improving education for others’ children while sending me to the best option for my growth, I say one can support the system of tomorrow without sacrificing to what it is today.</p>
<p>Many more criticize doctors who set up MDVIP practices.  If you google <a href="http://www.mdvip.com/patient/default.aspx">MDVIP</a>, a for-profit company based in Florida, as I did,  you will find a host of links referring to MDVIP as a scam, a rip-off,  for greedy doctors abandoning patients, etc.  I say to my fellow patients &#8212; Stand down!  Take a breath and think about it.  Your doctor went to college, medical school, residency, fellowships to learn everything needed to treat you excellently.  Unless their families were independently wealthy, they accrued large debt, and now you want them to save your life for the same amount of money that you pay your teenage babysitter.  Come on be fair.   You say, “but my doctor gives me lots of attention.  Why should I pay extra for what I already am or what I should be getting?” Well then you are why the rest of us wait 2 hours.  And your doctor is on his or her way to being a burnt out shell who will leave the profession in a few years.  The first thing out of the doctor’s mouth when I went to visit the MDVIP practice was, “Under my former practice model I was pressured to spend increasingly less time with patients who had increasingly  more problems. I couldn’t do for them what they and I both wanted to be able to do.” Sounds like just the type of doctor we all want.</p>
<p>The only real solution is more primary care physicians.  Fully paid tuition, better reimbursement for preventive and coordinating services, and other supports for those who go into and stay in primary care would be one of the best investments this country could make to ensure true access to quality healthcare for all.</p>
<p><a href="../wp-content/uploads/2010/08/Criteria.doc"></a><a href="http://www.DCPatient.us/wp-content/uploads/2010/08/Primary-Care-Evaulation-Chart-MDVIP-vs.-Executive-Health-vs.-PCP.doc">Primary Care Evaulation Chart MDVIP vs. Executive Health vs. PCP</a></p>
]]></content:encoded>
			<wfw:commentRss>http://www.DCPatient.us/2010/08/why-i-chose-a-concierge-medicine-practice/feed/</wfw:commentRss>
		<slash:comments>2</slash:comments>
		</item>
		<item>
		<title>Please Vote!!! Patient Advocacy 2.0</title>
		<link>http://www.DCPatient.us/2010/08/please-vote-patient-advocacy-2-0/</link>
		<comments>http://www.DCPatient.us/2010/08/please-vote-patient-advocacy-2-0/#comments</comments>
		<pubDate>Wed, 11 Aug 2010 21:57:43 +0000</pubDate>
		<dc:creator>DCPatient</dc:creator>
				<category><![CDATA[General]]></category>
		<category><![CDATA[Healthcare Reform]]></category>
		<category><![CDATA[3-D]]></category>
		<category><![CDATA[Avatar]]></category>
		<category><![CDATA[patient]]></category>
		<category><![CDATA[patient advocate]]></category>
		<category><![CDATA[SXSW]]></category>

		<guid isPermaLink="false">http://www.DCPatient.us/?p=255</guid>
		<description><![CDATA[Thinking about patient participation in healthcare as an immersive 3-D experience instead of a flat 2-D social media experience can transform personal and public advocacy on health and healthcare delivery issues.]]></description>
			<content:encoded><![CDATA[<div class="tweetmeme_button" style="float: right; margin-left: 10px;">
			<a href="http://api.tweetmeme.com/share?url=http%3A%2F%2Fwww.DCPatient.us%2F2010%2F08%2Fplease-vote-patient-advocacy-2-0%2F"><br />
				<img src="http://api.tweetmeme.com/imagebutton.gif?url=http%3A%2F%2Fwww.DCPatient.us%2F2010%2F08%2Fplease-vote-patient-advocacy-2-0%2F&amp;source=dcpatient&amp;style=normal&amp;b=2" height="61" width="50" /><br />
			</a>
		</div>
<p>Please <a href="http://panelpicker.sxsw.com/ideas/index/7/presenter:Cryer/category:">Vote</a>!!! <a href="http://panelpicker.sxsw.com/ideas/index/7/presenter:Cryer/category:">Patient Advocacy 2.0</a><br />
I really wanted to call my presentation Patient Advocacy in 3-D. See why.</p>
<p>I am very excited to have the potential to speak at the 18th annual SXSW® Interactive Festival.  This unique forum challenges you to envision the future of innovative technology. Featuring five days of compelling presentations from the brightest minds in emerging media and scores of exciting networking events hosted by industry leaders, SXSW Interactive offers an unbeatable line up of special programs showcasing the best new websites, digital projects, wireless applications, video games and startup ideas the community has to offer. From hands-on training to big-picture analysis, SXSW Interactive has become the place to preview of what is unfolding in the world of creative technology. Join us March 2011 for the panels, the parties, the 14th Annual Interactive Awards, SXSW ScreenBurn, the SXSW Trade Show, SXSW Accelerator and, of course, the inspirational experience that only SXSW can deliver.</p>
<p>My <a href="http://panelpicker.sxsw.com/ideas/index/7/presenter:Cryer/category:">presentation</a> would ask and answer:  How can we make patient advocacy more like Avatar? Why would we want to? </p>
<p>Thinking about patient participation in healthcare as an immersive 3-D experience instead of a flat 2-D social media experience can transform personal and public advocacy on health and healthcare delivery issues. Patients as makers of healthcare policy, rather than just commenters on the gaps, flaws, and dysfunctions in policy is the next stage of patient advocacy evolution. </p>
<p>•	How has the aggregation of patient voices in online communities created platforms for advocacy?<br />
•	What is the difference between personal and public advocacy?<br />
•	How can we translate online activism into actual policy and systems change?<br />
•	What are the barriers, internal and external, to translation of healthcare 2.0 to healthcare 3-D?<br />
•	What opportunities are there for patient advocates to influence policy?<br />
Please <a href="http://panelpicker.sxsw.com/ideas/index/7/presenter:Cryer/category:">vote</a> and please join me (fingers crossed) next March in Austin, TX!<br />
<a href="http://panelpicker.sxsw.com/ideas/index/7/presenter:Cryer/category:">http://panelpicker.sxsw.com/ideas/index/7/presenter:Cryer/category:</a></p>
]]></content:encoded>
			<wfw:commentRss>http://www.DCPatient.us/2010/08/please-vote-patient-advocacy-2-0/feed/</wfw:commentRss>
		<slash:comments>0</slash:comments>
		</item>
	</channel>
</rss>

