5-7-10 Community E-Newsletter/Call

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Hi and Happy Friday. In today's Community Call, we'll have the opportunity to comment on some relevant articles related to the OurMed cause as well as review progress on our Phase 2 development and request input from the community.

This is an open invitation to get more involved with the world's first ever, unbiased, free license and dynamic medical/health knowledge base.

Time: Friday (Today!) 2 - 2:45pm EST
Passcode: 634011#

If you would like to opt out of these emails, please let me know. Thank you for your continued interest in the OurMed initiative--we couldn't make this happen without your participation and are grateful for you pitching in!

Greg Miller, Executive Director at OurMed.Org

(212) 740-1850
Watch our OurMed YouTube Video:http://www.youtube.com/watch?v=zqgYfFxEkLk

Contents

OurMed's Technology Update

In today's community call, we'd like you to give your feedback several critical issues related to the site development.

Specifically:

1) CMS Platform - Rather technical but basically our vendor Blueliner, would like us to consider using another CMS that is a hybrid to MediWiki.  Our counter proposal is to insist entirely on MediaWiki or to remain with the Joomla/MediaWiki hybrid.

2) We'd like to confirm the approach with Multi-language issue of our global site.  We will discuss the possibilities presented by Blueliner today which will include a splash page (like Wikipedia) or a user account settig (like Facebook). Our contract calls for the site to be done in over 10 languages and we can discuss how to choose those languages.

3) Split Screen--One of our objectives to build a new site is to marry the meritocracy of Healthcare Professional authored articles with  patient and consumer feedback that represent the Democracy of Information--This is a critical inner page that we'd like your feedback on.

4) The Search Algorithm is something that is a highly technical part of our -site. Using geo-targeting strategies we will need to determine how we search for sites considering ip addresses, an author of an article's location, or the searcher's location. Blueliner's Arbab will suggest an algorithm.

5) New Facebook technology to affect OurMed!
Arbab wanted to draw your attention to latest features that are being launched by Facebook. Arbab believes Facebook made the announcement yesterday. Have a look at the presentation: http://apps.facebook.com/feightlive/

The new features will really re-shape how users interact with other site and how they share information. It will also encourage sites to 6incorporate Facebook's new APIs to draw more traffic.

6) Using an image on our homepage to communicate "collaboration". This very important aspect of the OurMed branding will be in the Featured Spotlight section of our homepage design.

http://ayanthianandagoda.files.wordpress.com/2009/07/collaboration.jpg


Building content – What to write about?

Changes or additions can be made easily with our WYSYWIG editor (what you see is what you get), making it much easier than Wikipedia and cutting the volume ramp up rate to the new site significantly faster.

At times posting new material may be difficult to give attributions for so it may be easier to publish previously published work
Alternatively, you can choose content from one of the many free content ("copy left") sites such as much of the content on:

1. Medpedia.com

2. NIH's PubMedCentral.gov from the National Library of Medicine

3. Wikipedia.org

4. GanFyd.org (original medical wiki site that claims Medpedia copied them and boasts 2000 site visitors per day)

5. PubMed.org

6. Medline

7. Open.Michigan from the University of Michigan

8. WikiChiro.Org

8. Others?


Posting on OurMed.Org

In addition to the Symbiosis Project, OurMed offers writers of original work to publish a vast range of medical topics. Under the three pillar approach of 1) Being Referenced 2) Being Bold and 3) Being Polite, OurMed strives to be a forum through which multiple health and medical issues are presented and debated.

To write, you must have a free OurMed account. You can write about nearly anything, just keep your comments about new ideas,health and medicine.--It's really important that OurMed gets off the ground using a communities collaborative approach to building it, just as Wikipedia did nine years ago.

We are furthering our editorial policies to include a Style Guide.  Feel free to suggest ideas to make this a global "go-to" resource for all healthcare needs fit for any patient or healthcare professional.

Please click on this link to make a small post about whatever's on your mind. You can suggest articles, design or features that you'd like to see on the site. http://ourmed.org/index.php/New_Ideas_for_Site

Most Active Authors in The Past Month:

  • Savealife
    * D Joiner
    * Gmiller
    * Arbab
    * T1
    * Vnavarro
    * PooraviGT
    * PatrickMullen
    * Drsjpdc
    * Elisep


OurMed's MedTool Project

As we develop OurMed's Phase 2 site, we want to announce a competition to inspire our content contributors to come up with the most useful healthcare diagnostic tools from around the world.

Submissions will eventually be open-sourced and written in Joomla so that it will "plug-in" to our new site as well as be available to all around the world in a copy-left offering. To contribute, a contestant need not be tech savy but only be familiar with common health and medical needs. Will it be a simple Body-Mass calculator, Symptom Disease matcher, Diabetic Insulin calculator--the list may go on and one but we want the most popular, best and easiest to use!


How to get health advice online: A Doctor's Guide

Monday, Apr 26, 2010 14:35 ET Editor: Steve Kornacki

Physicians may debate the Web's influence, but patients must simply be savvy when they seek a medical diagnosis By Rahul K. Parikh, M.D.


A recent article in the New England Journal of Medicine by Harvard doctors Jerome Groopman and Pamela Hartzband fired up a decade-long debate about patients who use the Internet to learn about their health. Though the physicians praised the Web for fundamentally changing the doctor-patient relationship, giving more control to patients than ever before, they went on to sound the alarm. "Falsehoods are easily and rapidly propagated on the Internet," they sternly cautioned. And for hypochondriacs, the Web is "perilous."

Many e-patients, as they're called, were not pleased. "Dear Dr. Hartzbrand & Dr. Groopman: The Internet is here to stay. Let's move on," tweeted Susannah Fox of the influential Pew Internet and American Life Project, which closely follows e-health trends. Gilles Frydman, the founder of one of the largest cancer support websites, chimed in: "I was saddened to see that [the] opinion piece shows one more time that many doctors remain uncomfortable about rebalancing the control to a more transparent system ... there is no examination of the positive aspects of the growing number of informed, activated and engaged networked patients," he wrote.

It was the old medical establishment versus a new cadre of Internet-informed e-patients, and as such, it reminded me of a spat two years ago, when Time magazine's medical columnist Dr. Scott Haig called patients using the Internet "brainsuckers." That essay was nothing more than a petulant rant. Groopman and Hartzband, on the other hand, raise valid concerns about the uneasy alliance of health and technology at a time when the Internet's presence in our lives keeps growing. Don't misunderstand: I encourage my patients to use the Web -- to better understand health and medicine, and to hold doctors accountable for their decisions. But in my experience, many patients are not as savvy as Gilles Frydman and his fellow e-patients. The truth is, the Internet cuts both ways. Let's dial down the rhetoric and get on with something more important: helping others be smarter health consumers on the Web.

  • Continue reading

Frydman is certainly right that the Internet can empower patients, in turn promoting sensible medicine. I'll illustrate with the following story: An infant in my practice developed severe constipation. When the therapies we tried didn't help, I began to suspect a condition called Hirschsprung's disease, in which a child is born lacking nerves to the parts of the rectum and lower colon that help them have bowel movements. I saw them in my office for an exam. The parents had done research on the Web before they came to see me, so they knew about Hirschsprung's disease and that it would entail a referral to a specialist and a biopsy to diagnose it. They were anxious, no doubt, but they also came prepared with questions enabling us to get their child the right care.

Groopman and Hartzband are also right that e-patients have plenty to be cautious about. When they are not, the risks of the Internet outstrip its benefits, driving up cost, lowering quality and hurting the doctor-patient relationship. Again, a story from my own practice: I recently saw a teenager who had multiple minor complaints -- a little fatigue, a string of recent colds, some sores in the mouth being treated by the dentist. Her mother pushed a piece of paper at me, asking me to order a specialized test for Lyme disease, one that I had never seen or heard of. The mother, having done Internet research and communicated with others over the Lyme disease message boards, was convinced that this was her daughter's diagnosis, even though nothing in her history and exam suggested it. Yet she wouldn't relent, and waved more and more printouts at me with information to support her diagnosis. I felt pressure to cave -- after all, she was just asking me to sign a piece of paper. But there was more at stake here: If the test came back positive, her daughter would need at least six months of antibiotics. This would require her to have an intravenous line surgically placed into her body (putting her at risk for serious infections) and regular home visits from a nurse to administer the medication.

For an hour, I held my ground, eventually agreeing to look into the matter further before making a final decision. It didn't take long to learn that the test she had championed basically lowers the bar for what constitutes a diagnosis of Lyme disease, so that essentially everybody who takes it has it. Yet when I explained my concerns to her, she wouldn't have it. "There's no such thing as a false positive Lyme test," she insisted. Doctor or not, anybody who has taken a basic statistics class can tell you that it's impossible for a test to be 100 percent accurate. Before I could respond, she got angry and accused me of obstructing her child's path to health. Needless to say, we parted ways.

Experiences like that have taught me that it's still more about people than the Internet. If you are an e-patient and you see Dr. Scott Haig, you're going be upset because he called you a brainsucker instead of addressing your needs. On the other hand, if you're an e-patient like the mother of that teen, you're going to be upset because you expected your doctor to take your order like a waiter at a fancy restaurant. What patients need more of is, in Gilles Frydman's words, "respectful discourse" with their doctors. What doctors need more of is a patient's acceptance that, in Groopman and Hartzband's words, "information and knowledge do not equal wisdom."

With that in mind, we need to help the masses surf the Web wisely. The first lesson is: Don't panic. This is, perhaps, the hardest lesson to learn; countless worriers have Googled themselves into a lather over misunderstandings. But every doctor has stories of a patient who came in expecting cancer and left with nothing more than, say, a prescription for antibiotics. A parent in my practice anxiously brought in her 3-year-old son with back pain. The night before, she looked online at the diagnostic possibilities. Many were listed, but, of course, it was the most frightening ones that stuck with her: tumor, infection, degenerative neurological disease. When I examined her son, there was nothing abnormal at all. In fact, it turns out he had been squeezing into his parents' bed to sleep with them over the past few nights, the back pain nothing more than the result of sleeping in an awkward position. When I spoke with the boy's mom, I wanted her to know that, like that list she had looked at on the Web, doctors always consider a wide range of possible diagnoses, but a good history and physical will quickly narrow things down, and provide some context to relieve uncertainty and anxiety. I'm betting the next time she goes online to learn about her child's health, she will keep that in mind and perhaps shoot me an e-mail before she fights traffic and the notorious parking lot at my medical center.

It sounds mundane, but teaching Web surfers to check references that back up health claims, and to see who is sponsoring the site, could really help them separate sound advice from, say, the Huffington Post. There are also a lot of games that dubious advocacy groups play on the Web to stay visible. Google "autism" and one of the highest-ranking pages is the Autism Research Institute, which is a conglomerate of anti-vaccine groups offering "biomedical" treatments for children with the disorder, all of which cost a lot of money and none of which have been proven to work. That means it also makes a lot of sense for people to search multiple sites, and ones that aren't hyperlinked to each other so they perpetuate a single person or group's agenda. One terrific place to get these kinds of pointers is from the National Library of Medicine, which offers an online tutorial about smart ways to use the Internet to find health information. As for my own advice on where to go, you can start by looking at sites that minimize conflicts of interest and have reputations for developing and maintaining high-quality, accurate and up-to-date health content. The CDC, NIH and other government agencies fit that bill, as do multispecialty medical groups like the Mayo Clinic, Kaiser Permanente (full disclosure: I'm a Kaiser doc) and the Cleveland Clinic.

Finally, believe me when I tell you that as much as the Internet has helped patients become better informed of their health, it's helping doctors do the same, and look smart as a result. A while back a colleague of mine ran over to my office asking me if I remembered McMurray's sign. This is a maneuver one performs on the knee to check how stable it is, and whether the anterior cruciate ligament is damaged. I did not, I told him. But as I was reaching for a textbook off my shelf I stopped, spun around to face my computer, pulled up YouTube and typed in McMurray's sign. Up popped several "how to" videos. We watched one of them, and off went my colleague to try it on his own patient, giving new meaning to the medical school adage "see one, do one, teach one."

  • More Rahul K. Parikh, M.D.



Consort 2010 Statement: updated guidelines for reporting parallel group randomised trials

 



[[Image:|Open Access]][[Image:|Highly Access]]Research

Kenneth F Schulz1 [[Image:|email]], Douglas G Altman2 [[Image:|email]] and David Moher3 [[Image:|email]] for the CONSORT Group

Family Health International, Research Triangle Park, NC 27709, USA

Centre for Statistics in Medicine, University of Oxford, Wolfson College, Oxford, UK

Ottawa Methods Centre, Clinical Epidemiology Program, Ottawa Hospital Research Institute, Department of Epidemiology and Community Medicine, University of Ottawa, Ottawa, Canada

The electronic version of this article is the complete one and can be found online at: http://www.trialsjournal.com/<wbr></wbr>content/11/1/32

This is an Open Access article distributed under the terms of the Creative C://ommons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract

The CONSORT statement is used worldwide to improve the reporting of randomized controlled trials. Kenneth Schulz and colleagues describe the latest version, CONSORT 2010, which updates the reporting guideline based on new methodological evidence and accumulating experience.

To encourage dissemination of the CONSORT 2010 Statement, this article is freely accessible on bmj.com and will also be published in the Lancet, Obstetrics and Gynecology, PLoS Medicine, Annals of Internal Medicine, Open Medicine, Journal of Clinical Epidemiology, BMC Medicine, and Trials.

Introduction

Randomized controlled trials, when appropriately designed, conducted, and reported, represent the gold standard in evaluating healthcare interventions. However, randomized trials can yield biased results if they lack methodological rigor [[|]][1]. To assess a trial accurately, readers of a published report need complete, clear, and transparent information on its methodology and findings. Unfortunately, attempted assessments frequently fail because authors of many trial reports neglect to provide lucid and complete descriptions of that critical information [[|]][[|]][[|]][2-4].

That lack of adequate reporting fueled the development of the original CONSORT (Consolidated Standards of Reporting Trials) statement in 1996 [[|]][5] and its revision five years later [[|]][[|]][[|]][6-8]. While those statements improved the reporting quality for some randomized controlled trials, [[|]][[|]][9,10] many trial reports still remain inadequate [[|]][2]. Furthermore, new methodological evidence and additional experience has accumulated since the last revision in 2001. Consequently, we organized a CONSORT Group meeting to update the 2001 statement [[|]][[|]][[|]][6-8]. We introduce here the result of that process, CONSORT 2010. [[|]]

Intent of CONSORT 2010

The CONSORT 2010 Statement is this paper including the 25 item checklist in the table (Table [[|]]1) and the flow diagram (Figure [[|]]1). It provides guidance for reporting all randomized controlled trials, but focuses on the most common design type-individually randomized, two group, parallel trials. Other trial designs, such as cluster randomized trials and non-inferiority trials, require varying amounts of additional information. CONSORT extensions for these designs, [[|]][[|]][11,12] and other CONSORT products, can be found through the CONSORT website http://www.consort-statement.<wbr></wbr>org website. Along with the CONSORT statement, we have updated the explanation and elaboration article, [[|]][13] which explains the inclusion of each checklist item, provides methodological background, and gives published examples of transparent reporting.

Table 1. CONSORT 2010 checklist of information to include when reporting a randomized trial*

[[Image:|thumbnail]Figure 1.] Flow diagram of the progress through the phases of a parallel randomized trial of two groups (that is, enrollment, intervention allocation, follow-up, and data analysis).

Diligent adherence by authors to the checklist items facilitates clarity, completeness, and transparency of reporting. Explicit descriptions, not ambiguity or omission, best serve the interests of all readers. Note that the CONSORT 2010 Statement does not include recommendations for designing, conducting, and analyzing trials. It solely addresses the reporting of what was done and what was found.

Nevertheless, CONSORT does indirectly affect design and conduct. Transparent reporting reveals deficiencies in research if they exist. Thus, investigators who conduct inadequate trials, but who must transparently report, should not be able to pass through the publication process without revelation of their trial's inadequacies. That emerging reality should provide impetus to improved trial design and conduct in the future, a secondary indirect goal of our work. Moreover, CONSORT can help researchers in designing their trial. [[|]]

Background to CONSORT

Efforts to improve the reporting of randomized controlled trials accelerated in the mid-1990s, spurred partly by methodological research. Researchers had shown for many years that authors reported such trials poorly, and empirical evidence began to accumulate that some poorly conducted or poorly reported aspects of trials were associated with bias [[|]][14]. Two initiatives aimed at developing reporting guidelines culminated in one of us (DM) and Drummond Rennie organizing the first CONSORT statement in 1996 [[|]][5]. Further methodological research on similar topics reinforced earlier findings [[|]][15] and fed into the revision of 2001 [[|]][[|]][[|]][6-8]. Subsequently, the expanding body of methodological research informed the refinement of CONSORT 2010. More than 700 studies comprise the CONSORT database (located on the CONSORT website), which provides the empirical evidence to underpin the CONSORT initiative.

Indeed, CONSORT Group members continually monitor the literature. Information gleaned from these efforts provides an evidence base on which to update the CONSORT statement. We add, drop, or modify items based on that evidence and the recommendations of the CONSORT Group, an international and eclectic group of clinical trialists, statisticians, epidemiologists, and biomedical editors. The CONSORT Executive (KFS, DGA, DM) strives for a balance of established and emerging researchers. The membership of the group is dynamic. As our work expands in response to emerging projects and needed expertise, we invite new members to contribute. As such, CONSORT continually assimilates new ideas and perspectives. That process informs the continually evolving CONSORT statement.

Over time, CONSORT has garnered much support. More than 400 journals, published around the world and in many languages, have explicitly supported the CONSORT statement. Many other healthcare journals support it without our knowledge. Moreover, thousands more have implicitly supported it with the endorsement of the CONSORT statement by the International Committee of Medical Journal Editors http://www.icmje.org website. Other prominent editorial groups, the Council of Science Editors and the World Association of Medical Editors, officially support CONSORT. That support seems warranted: when used by authors and journals, CONSORT seems to improve reporting [[|]][9]. [[|]]

Development of CONSORT 2010

Thirty one members of the CONSORT 2010 Group met in Montebello, Canada, in January 2007 to update the 2001 CONSORT statement. In addition to the accumulating evidence relating to existing checklist items, several new issues had come to prominence since 2001. Some participants were given primary responsibility for aggregating and synthesizing the relevant evidence on a particular checklist item of interest. Based on that evidence, the group deliberated the value of each item. As in prior CONSORT versions, we kept only those items deemed absolutely fundamental to reporting a randomized controlled trial. Moreover, an item may be fundamental to a trial but not included, such as approval by an institutional ethical review board, because funding bodies strictly enforce ethical review and medical journals usually address reporting ethical review in their instructions for authors. Other items may seem desirable, such as reporting on whether on-site monitoring was done, but a lack of empirical evidence or any consensus on their value cautions against inclusion at this point. The CONSORT 2010 Statement thus addresses the minimum criteria, although that should not deter authors from including other information if they consider it important.

After the meeting, the CONSORT Executive convened teleconferences and meetings to revise the checklist. After seven major iterations, a revised checklist was distributed to the larger group for feedback. With that feedback, the executive met twice in person to consider all the comments and to produce a penultimate version. That served as the basis for writing the first draft of this paper, which was then distributed to the group for feedback. After consideration of their comments, the executive finalized the statement.

The CONSORT Executive then drafted an updated explanation and elaboration manuscript, with assistance from other members of the larger group. The substance of the 2007 CONSORT meeting provided the material for the update. The updated explanation and elaboration manuscript was distributed to the entire group for additions, deletions, and changes. That final iterative process converged to the CONSORT 2010 Explanation and Elaboration [[|]][13]. [[|]]

Health care tries to figure out what works best

By Guy Boulton ♦

Posted: May 2, 2010 |(21) Comments

John Maniaci
What's the best way to treat prostate cancer? What about an irregular heartbeat? Or back pain? Are new drugs for treating high cholesterol any more effective than older drugs?

No one really knows - including your doctor.

In a health care system that spends $2.5 trillion a year, less than one-tenth of 1% is spent on research to determine what treatment options work best - and, in some cases, whether they work at all.

"We spend billions of dollars on developing new treatments and technologies, but we don't go back through and say, 'OK, how do they work?' " said Murray Ross, director of research at the Kaiser Permanente Institute for Health Policy.

The result is tens of billions of dollars - and maybe much more - spent each year on treatments that are of marginal or questionable value.

In recent years, doctors, economists, health plans, business groups and others have called for increased research on comparative effectiveness - research that compares different treatment options.

That's about to happen.

The American Recovery and Reinvestment Act passed by Congress last year allocated $1.1 billion for the research. And the new health care reform legislation will create a nonprofit institute to fund research on the effectiveness of medical treatments.

The new Patient-Centered Outcomes Research Institute is to receive more than $200 million a year on research starting in 2013 to learn more about which treatments work best for which patients.

"For a physician, the first question is what works," said Maureen Smith, a physician and professor at the University of Wisconsin School of Medicine and Public Health.

The evidence needed to answer that question for specific patients often doesn't exist. As a result, many of the treatment options that confront doctors and patients every day - from which drug to prescribe to complex regimens for chemotherapy - are not based on solid evidence.

Doctors instead must rely on weak or limited studies, expert opinion, anecdotal evidence, their own experience and judgment - and, to some degree, marketing by pharmaceutical and medical device companies.

The Institute of Medicine, the health arm of the National Academy of Sciences, has estimated that fewer than half of treatments given to patients are supported by good evidence.

Others consider that estimate high. Ross estimates that 25% or less of what doctors and other clinicians do isn't based on good evidence.

Examples abound:

When should a patient with narrow arteries be treated with drugs instead of angioplasty, or angioplasty instead of bypass surgery? When is it best to treat atrial fibrillation with drugs, surgery or catheter ablation, a procedure used to scar or destroy tissue that may interfere with the electrical signal to the heart? What's the best way to manage patients with noninvasive breast cancer?

"We have strong evidence for some things, but we have substantially less evidence for most of what we do in medicine," said Paul Keckley, executive director of the Deloitte Center for Health Solutions.
Savings goal

Funding research to answer those and other questions could result in better care.

It also could make better use of health care dollars, although that's not guaranteed. Sometimes the most effective treatment costs more. And any savings could be a decade or more away, given the complexity of the studies and the challenges in changing the way doctors practice.

But numerous studies have estimated that as much as one-third of the money spent on medical care doesn't improve patients' health.

One result is the widespread variation in treatments for similar patients, which can be seen in Wisconsin. The Dartmouth Atlas of Health Care found that for every 1,000 people in Medicare in 2005:

• Patients were 107% more likely to have an angioplasty if they lived in Milwaukee instead of La Crosse. They were 39% more likely to have that procedure in Milwaukee than in Marshfield.

• Patients were 120% more likely to have heart bypass surgery if they lived in Wausau instead of Madison. They were 49% more likely to have the surgery if they lived in Milwaukee instead of Madison.

• Patients were 99% more likely to have back surgery if they lived in the Neenah and Oshkosh area instead of Marshfield. They were 88% more likely to have back surgery in Neenah and Oshkosh than Madison.

The variation in common procedures is even larger nationally and, as the Institute of Medicine and others have noted, all of the patients can't be receiving the best care.

Without question, uncertainty is an inherent part of medicine. There are more than 6,000 drugs and 4,000 operations and procedures - not to mention 13,000 medical diagnoses. And each advance raises new questions.

But part of the uncertainty stems from the focus by health care systems on new drugs and procedures. New technology accounts for roughly half of the increase in spending - and new technology in health care almost always costs more.

This focus has resulted in stunning advances in medicine in recent decades. At the same time, doctors want to stay at the forefront of their profession, and they often are quick to adopt new technologies before good evidence exists to show that they work better than existing technologies.

Health care systems can be just as quick to tout new treatments - which almost always pay more - in their marketing campaigns.

The result is that new drugs and technology can outpace the ability of doctors and researchers to determine whether they work better than existing technology.
Drug research

Pharmaceutical companies put their research dollars into developing new drugs as opposed to research on how to make the best use of relatively new drugs already on the market, said Ann Nattinger, a physician and professor at the Medical College of Wisconsin.

She doesn't oppose developing new drugs and other treatments. "But we don't have enough evidence on how to use the drugs that we already have," said Nattinger, who is director of the Center for Patient Care and Outcomes Research.

That can be seen in the practice guidelines - recommendations on how to treat specific diseases - developed by medical specialties and others.

For example, a 2006 review of recommendations for preventing and treating breast cancer - Nattinger's research focus - found the overall quality of the available guidelines was "modest."

"There are so many aspects of the treatment that haven't been tested," she said, "so the guidelines end up having to be rather general."

How long should women be treated with hormonal therapy, for example, or what's the best way to manage noninvasive breast cancer?

"All those are still open questions," Nattinger said.

Cardiologists may have the best practice guidelines of any specialty. Yet a recent review of the guidelines developed by the American College of Cardiology and the American Heart Association found that relatively few recommendations were based on high quality evidence.

"It's a shocking deficit," said Matthew Wolff, a cardiologist and professor at the UW medical school. "We have the technology to do it, but we don't spend the money."

One of the quirks of the health care system is that few incentives exist to conduct comparative effectiveness research.

Drug companies in most cases have to show only that a drug works better than nothing, and even then only in carefully controlled conditions for a select group of patients that can differ significantly from those that doctors see day in and day out.

The bar is even lower for medical devices, such as orthopedic implants.

The clinical trials needed to win federal approval for a new drug also are unlikely to detect uncommon side effects because they typically involve relatively few people and often focus on short-term outcomes.

In addition, the people in research trials often are younger and healthier than the patients likely to be given the drug if it wins approval.

"That's probably the biggest distinction between where we have been and where we need to go," said Smith, the UW professor.

An effective treatment for an 80-year-old woman may differ significantly for a 20-year-old woman. "We don't know nearly enough about how to deliver the best care to the entire range of patients," Smith said.

The lack of information isn't limited to new drugs or to the most advanced therapies to treat heart disease or cancer.

The health care system spends $20 billion a year on wound therapy. Which of the competing devices used for negative pressure wound therapy - applying a vacuum on a wound - work best? A review of the available evidence by the federal Agency for Healthcare Research and Quality concluded that this couldn't be determined.

For that matter, whether the devices work any better than standard treatments also isn't known.

Even the most basic care often isn't based on solid evidence. How often a pregnant woman should see her doctor: Four times? Six times? How often should she have an ultrasound? Is an ultrasound even needed for a normal pregnancy?

Doctors don't know, said Sheldon Wasserman, a Milwaukee obstetrician and gynecologist.
Setting priorities

That basic question - what's the optimal use of ultrasound during pregnancy - is among 100 priorities for comparative effectiveness research developed by the Institute of Medicine last summer.

The institute was given the task of recommending research priorities for the $1.1 billion allocated under the recovery act. It set up a committee that received more than 2,600 suggestions.

Recommendations range from comparing the effectiveness of complex cancer drugs to the best way to treat attention deficit hyperactivity disorder to treatments for back pain and heart disease.

Funding the research is just the start. The research is complex. Studies often conclude that existing evidence doesn't provide any answers. And even when it does, the answers are rarely clear-cut.

"It is often not that one is better and one is worse," said Alan B. Rosenberg, a physician and vice president who oversees medical policy and technology assessment for WellPoint Inc., the parent of Anthem Blue Cross and Blue Shield of Wisconsin. "It often is the relative benefits and relative harms of the alternatives."

A treatment may work better in some patients and worse in others. Doctors will still have to rely on their judgment and experience.

Another challenge is to persuade doctors and patients to make use of the research. The Institute of Medicine report last year noted that a wide gap exists between the results of the research and the findings' making their way into clinical practice and health policy.

The research also often faces opposition. The proposal to fund more comparative effectiveness research sparked controversy in the debate on health care reform, and that could continue.

Despite the challenges and the controversy, the research has broad support among doctors.

"They are the ones who support this," said UW's Smith, "because they and their patients are the ones who have to make the decisions."

Reporter Guy Boulton conducted research for this series during a fellowship funded by the Kaiser Family Foundation, a nonprofit, nonpartisan health policy research organization with offices in Menlo Park, Calif., and Washington, D.C.




Pioneer Bios

Just like the Wikimedia Foundation that created Wikipedia, OurMed will mostly be driven by volunteers. In addition to the occasional business or technology consultant, the profile for OurMed’s volunteer community will be talented professionals that want to make bring forward the OurMed mission to the end-goal of having a global impact.

To incentivize our founders, we have created the Founding Framer Program. To date, the following folks are eligible and working toward a goal to volunteer more than 100 Communty hours:


Vincente Navarro  (OurMed Tech Committee Chair)

212 444 2633  vnavarro@pipeline.com

Research Specialist @ Weill Medical College

Online Database Manager @ Scientists Without Borders


I have done basic science research for over 15 years in the area of prostate cancer. During this time I have had the privilege of working on the development of monoclonal antibodies targeting prostate cancer from concept through clinical trials. This has afforded me a keen insight into development process of therapeutic drugs. In addition, a strong interest in computers has seen me pursue a graduate degree in computer science in addition to my undergraduate in Chemistry. As a result I have designed and developed a clinical trials management system in my laboratory. I am currently the Online Database Manager for Scientists Without Borders. There, I am responsible for the administration of the database and development of the web portal.


Eileen McGinn, MPH (OurMed Content Committee)

MPH/Certificate in Aging,  qedeileen@aol.com

Worked in international health and development for 25 years, including several years living in Africa and Asia. Currently PT Research Manager for Nathan Kline Institute, working on the interrelation of poverty and mental health and health equity for persons with disabilities. PT tutor for immigrant high school students at Manhattan Comprehensive Night and Day High School. Volunteer work for many different agencies, including health, disability, immigrant, women's, peace, international. Have written for various websites on health issues. Especially interested in translating technical work into comprehensible language, community-based participatory research and the Capabilities Framework for development and justice.


Geoff Hayden, MD (OurMed Content Committee)

Geoffhayden@gmail.com 615.479.6499 (Cell)

I am a practicing Emergency Physician, splitting time between NYC and South Carolina. I have been in academic practice since 2005 (Residency at Vanderbilt University, Fellowship at University of Pennsylvania), with an emphasis on resident education and emergency ultrasound. My interest in OurMed.org stems from a dissatisfaction regarding the abysmal state of preventive care and a general lack of health care coverage in the U.S. I see OurMed.org as an essential resource to connect patients to health information and health providers.

I imagine my role with OurMed.org in terms of producing content, recruiting other physicians for ongoing contribution, and assisting Greg with the development of a user-friendly, comprehensive clearinghouse of useful health care information.

Geoffrey E. Hayden, MD, FAAEM, FACEP

Adjunct Clinical Professor Vanderbilt University Medical Center Department of Emergency Medicine Nashville, TN Piedmont Medical Center Emergency Department Attending

222 South Herlong Ave Rock Hill, SC 29732

Vanessa Moore (OurMed Recruitment Committee Chair)

MVanellen@ourmed.org 914-665-4534 (home) 914-751-9758 (cell)

Vanessa Moore is a native New Yorker who brings 7 years recruiting experience to the Ourmed recruitment effort. She would like to leverage her experience recruiting volunteers to Ourmed, a forward thinking and progressive approach to disseminating unbiased healthcare information to the public. She has worked in both corporate and nonprofit settings including a consulting engagement for the Department of Education and most recently at the Westchester Independent Living Center, an advocacy group for people with disabilities. She studied Social Sciences at the Lincoln Center campus of Fordham University.

Stephen Press, DC, PhD (OurMed Content Committee Chair)

A practicing Chiropractic physician (33 years). Was chief physician for the "Unified Team" (former USSR) at the XVIth Winter Olympic Games in Albertville, France in 1992. Founded the World Governing body for sports Chiropractic known as "FICS", for Fédération Internationale de Chiropratique du Sport, now headquartered in Lausanne, Switzerland at the Maison Internationale du Sports, and administered in Toronto, at the World Federation of Chropractic offices. I served on the Medical commission of two IOC recognized World Sports Governing bodies; 1st as Chairman for the Fed. Int'l de Roller Sports, and then as Vice-Chairman for FIDE (Chess). Founded the website IAOCO.org, and co-founded WikiChiro.org. Today, I serve as advisor for the International Sports Chiropractic Association, which is the liaison body interacting with the World Olympian's Association. I speak, English, French, Russian and Spanish, play the cello and clarinet, compete in pool, and follow biblical archeology and do artist blacksmithing, making swords and medieval armor as hobbies.

John Volpe (OurMed Tech Committee Content Liaison)

johnvolpe1@yahoo.com 516-221-4692

My background is primarily in accounting, finance and business operations, primarily in the financial services industry. While I'm not a technical professional, I have participated in and managed numerous technical and business projects, primarily involving financial systems. I also worked as a management consultant for a Virginia based company that I did consulting work for the federal and state governments. I am currently retired. In addition to playing tennis and engaging in other physical activities, I volunteer my time and an Account Director with an NYC based organization that provides service grants in the form of a volunteer project team that manages strategy, financial, marketing and development projects for non-profits. My interest in this project is really from the perspective of someone who is a consumer of medical information and is interested in the efficient delivery of medical information to the public.

Richard Knipel, OurMed Content Committee

I have been a volunteer for Wikipedia and other free culture efforts for several years, with a special focus on outreach initiatives to New York area cultural institutions, such as Wikipedia classes at the New York Public Library, museum photography with Wikipedia Loves Art, and urban photography with the TOPP nonprofit with Wikis Take Manhattan. I have served as President of the nonprofit Wikimedia New York City since September 2008. I hope to bring these experiences in helping to build Ourmed into an innovative and rich online healthcare community along the wiki model.

Elise Passikoff, OurMed Tech Committee

Elise Passikoff, OurMed Tech Committee
From a background in print and educational publishing, I entered the online world as an editor and technical writer at a start-up software company. There I learned the tools of the trade and gained valuable experience in writing, editing and posting online content. In 2000, I moved to the New York Academy of Sciences [www.nyas.org], where, first as online producer and then as web senior project manager I led the development, implementation, and maintenance of complex online projects, including the ground-breaking website Scientists Without Borders [[[scientistswithoutborders.org|scientistswithoutborders.org]]].

Diane Joiner, OurMed Content Committee

I have more than 25 years experience in print publishing. I began my career in publishing with Scientific American Magazine; and then transferred to Scientific American Medicine where I was a member of the production department. While at Scientific American Medicine I produced the 2,500 page, two volume, loose-leaf for internal medicine (Scientific American Medicine), as well as the 2,200 page two volume, loose-leaf for surgery (Scientific American Surgery: Practice and Principles). In 2000 I became a member of WebMD’s Professional Publlishing Division. While at WebMD I continued to produce books, pamphlets, and on-line products.

Greg Miller, OurMed Executive Director

at OurMed greg.miller@ourmed.org 212-740-1850

Have 17 years of Corporate Finance and Marketing experience for Fortune 500 companies including nine years abroad (Germany, England and Japan). I've been here in New York since 1996, always passionate about developing new brands, ideas and products. Did Marketing Analysis for ANA, a Japanese Airline, Finance for Cablevision's HD Satellite business and Revlon. Since 2005, I've been inspired by non-profits, created New York's Dance Parade and have worked on OurMed since the Fall of 2008. I'm inspired by the transparent, non-profit approach to the democratization of healthcare. OurMed has a small office at Columbia Medical Center's Audubon Business and Technology Building--Come by and visit us!

3960 Broadway (Entrance on 166th Street) Suite 301 o (212) 740-1850 c (917) 627-7155 greg.miller@ourmed.org

Watch the OurMed Presentation: http://docs.google.com/present/edit?id=0Ad4ohgeyfGzCZGRoNnFuNW1fMzljMmh2OW5jdw&hl=en

OurMed's Board of Directors:

Florence Devouard

OurMed Board Member fdevouard@anthere.org

Florence Devouard served as one of the elected representatives to the Wikimedia Foundation Board starting June 2004, and was the Chair of the WMF Board from October 21, 2006 until July 16th, 2008. Florence was born in Versailles (France). She grew up in Grenoble, and has been living since then in several French cities, as well as Antwerpen in Belgium and Tempe in Arizona. She holds two masters, one in Agricultural Sciences (a 5-year degree in agronomical engineering (Diplome d'Ingénieur Grande Ecole) from ENSAIA and the other a postgraduate degree (DEA) in Genetics and Biotechnologies from INPL.She has been working in public research, first in flower plant genetic improvement, and second in microbiology to study the feasability of polluted soil bioremediation. She was employed until 2005 in a French company, to conceive decision-making tools in sustainable agriculture. She is now a consultant in Internet Communication Strategy. She joined the Wikipedia adventure in February 2002 and is known as a contributor under the pseudonym Anthere. Florence is 39, and lives in Clermont Ferrand with her husband Bertrand and her three children, Anne-Gaëlle aged nine, William eleven and Thomas two. On May 16 2008, Florence was made a knight in the French National Order of Merit, proposed by the Ministry of Foreign Affairs as "chair of an international foundation"

Alex Fotopoulos

OurMed Board Secretary alex@broadwaylawoffices.com

Alex Fotopoulos has served on the board since October 2008. He attended Rutgers College in New Brunswick, NJ and then received his Juris Doctor degree from Southwestern University in Los Angeles, California in 1990. He has experience as a litigation attorney and as an entrepreneur. He has held held positions as an attorney and as part of the management team of such high technology companies including AT&T Wireless, T-mobile, Nextel, Metricom, GTE Internetworking as well as small local start-up ventures. He is a licensed Attorney in New York, New Jersey and California.

Stan Kachnowski

OurMed Board Chair swk16@hitlab.org

Stan Kachnowski is one of America’s distinguished scholars in health-care information policy and management having taught e-health and health-care e-business for nearly 20 years. He has authored over 100 scholarly papers and presentations for the world’s leading journals and societies in health-care technology management, informatics and e-governance. In 2003 he was elected as a Fellow in the Royal Society of Medicine in the United Kingdom for his research with the National Health Service in using handhelds to track patient data. In 1996 he was elected to the US-based College of Healthcare Information Management Executives. Stan is currently a visiting professor at the Indian Institute of Technology, New Delhi, India.

Oleta McHenry

OurMed Board Treasurer Newsgirl_fl@hotmail.com

Oleta McHenry was born in Washington D.C. and grew up in Ohio. After graduating high school, she briefly attended Wright State University in Dayton, studying Political Science. She transferred to St. Petersburg College in St. Petersburg, FL and received her A.A. degree in Liberal Arts. Oleta earned her B.S. in Accounting from Florida Metropolitan University in Clearwater, FL in 2006.
Oleta worked for the Pulitzer prize winning newspaper, St. Petersburg Times as a circulation manager. After receiving her degree in accounting, she worked briefly in the insurance industry before joining the Wikimedia Foundation as the fulltime accountant of record. While at the Wikimedia Foundation, Oleta helped put in place accounting practices that would help the company in growth and development. She did not follow Wikimedia to San Francisco and now works for a large medical supply company managing the General Ledger for several regions within the United States. Oleta resides in St. Petersburg, FL and works as an accountant.


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