Non-coding RNAs include a class of molecules called microRNAs (miRNAs or miRs). MicroRNAs are highly expressed in normal tissues and are being found to have critical roles in gene regulatory processes during cellular development and differentiation. MicroRNAs are small ncRNAs ~21-nucleotides long that regulate gene expression at the post-transcriptional level. MicroRNAs function by binding target mRNA molecules and either inhibiting translation into protein or targeting them for degradation. Abnormal microRNA expression has been linked to many human diseases, including schizophrenia, autism and cancer.

Click for a larger image

MicroRNAs (miRNAs) are transcribed from DNA to produce a stem-loop structure containing a primary transcript called a pri-miRNA that ranges in size from hundreds of nucleotides to tens of kilobases. In the nucleus, pri-miRNAs are processed to shorter ~70 nucleotide hairpin precursor miRNAs known as pre-miRNAs by a multiprotein complex called the Microprocessor complex, which consist of the core components Drosha, an RNase III enzyme, and Pasah, a double-stranded RNA binding protein. The pre-miRNA is transported to the cytoplasm and processed by another RNase III enzyme, Dicer, to produce mature ~22-nucleotide miRNA:miRNA duplexes. A ribonucleoprotein complex called miRSC is then assembled with one strand of the miRNA duplex called the guide strand (purple in figure). Depending upon partial or exact complementarity to messenger RNA, miRISC mediates inhibition of translation or messenger RNA degradation [3].

MicroRNAs represent exciting cutting-edge biomarkers for present and future clinical use that are actively being investigated. Currently, there are three commercially available molecular diagnostic tests for cancer based on microRNAs, all from Rosetta Genomics. In addition, microRNAs have potential application as prognostic indicators and therapeutic targets.

For more information on microRNAs, see:

• miRNA Blog
• You’d Prefer An Argonaute

Are you a Twitter user? Tweet this!

References

1. Identification and analysis of functional elements in 1% of the human genome by the ENCODE pilot project. ENCODE Project Consortium. Nature. 2007 Jun 14;447(7146):799-816.
   View abstract
2. Structured RNAs in the ENCODE selected regions of the human genome. Washietl et al. Genome Res. 2007 Jun;17(6):852-64.
   View abstract
3. Mechanisms of post-transcriptional regulation by microRNAs: are the answers in sight? Filipowicz et al. Nat Rev Genet. 2008 Feb;9(2):102-14.
   View abstract

Other Articles You May Like

• New Genes Associated with Blood Pressure and Hypertension
• Potential Location of Autism Genes Identified
• Detection of Colorectal Cancer Using a Blood-based, Six-Gene Biomarker Set

Heart disease is the leading killer in the U.S. and throughout most of Europe. People?s behaviour can protect and reduce risk of heart disease, and interventions to help people “self-manage” exist. But what is the best way to “self-manage”? A recent study shows that group programmes and self-directed programmes have remarkably different effects [1].

Self-management interventions exist for many health problems. They are notoriously difficult to define. One thorough definition is that it relates to activities undertaken by the person who has a “chronic” or “long-term” condition such as asthma, multiple sclerosis or arthritis. These activities include problem solving, decision making, resource utilization, the formation of a patient-provider partnership, action planning and self tailoring [2]. Interventions or programmes are designed around these activities to help support people to manage their own illness. The idea is that following attendance at a programme of some sort, the activities and skills learned will be continued to be used, thus improving health, maintaining fitness and/or quality of life and reducing the risk of future acute episodes of ill health. These interventions are popular for many reasons, including the relatively low cost to health service providers as interventions can be delivered by health-care professionals or by people with the relevant condition who have been trained, or a mixture of both. Self-management interventions also allow people with long-term conditions to be meet in a group with people with similar conditions. The experience of being in a group, knowing one is not alone and sharing stories is thought to play some part in the effectiveness of self-management interventions. But to what extent is this true?

Researchers at the University of Michigan explored the effect of the format of a self-management intervention for women with heart disease by comparing a “self-directed” programme to a “group” programme to a control group [1]. In the “self-directed” version, there was a single session with health educator followed by completing programme at home. The “group” programme consisted of 6 ? 8 women meeting for around 2 hours once a week for six weeks. In the control condition, no intervention was presented. The aim was to investigate which intervention would most usefully effect symptom experience, health status and weight. To make the comparison of the “self-directed” and “group” interventions more equitable, the “self-directed” version included videos of group discussions to emulate the motivation and support that would be given in the “group” programme. Further, to ensure information was provided to all, the “self-directed” group also received telephone calls from a health educator.

The results revealed a remarkable difference. Eighteen months after the intervention, data were collected. For the “self-directed” intervention, cardiac symptoms such as chest pain and dizziness were reduced in number, frequency and impact. For the “group” intervention, weight loss and exercise capacity (in terms of how far a person can walk within a set time) were improved. This is despite the fact that the information and instructions provided in both programmes were the same.

So does this mean we should all join groups if we want to lose weight and exercise more but stay at home if we want to feel fewer symptoms? Not necessarily. This study, like all studies, has several limitations. Obviously, the women in the “self-directed” group were not observed, so we do not know to what extent they followed the intervention they were given. A diary record of what the women did could have been included in this study, but even that may not be an accurate picture of how well the intervention was followed. Another issue is that the women in the “group” may have experience a higher “dose” of the intervention - that is to say the they attended a meeting for approximately 2 hours per week, receiving a two hour “dose”. We do not know how much time the women in the “self-directed” intervention spent on their activities. Further, this study included a sample only of women who were white and high school educated. Therefore, we cannot say whether the same effect would be observed outside of this group of people. It would be interesting to see this issue investigated with other demographics, including men (who may be less amenable to group processes), different ethnic groups and educational levels.

What the results do suggest however is that being in a group may facilitate exercise and weight loss improvement for women with heart disease. But we still do not know how this occurs. A common problem in behavioural interventions, including self-management interventions, is that we simply do not know which bit of the intervention is working. The study suggests that the “group” part of the intervention is affecting how the intervention works. However, we do not know why. Is peer pressure a factor? Would these results be the same if we looked at people in relation to personality type? Would a shy, introverted sample show the same results?

There are many self-management interventions available today, in terms of both health service packages, “self-help” books and DVDs, information from health care professionals, charity groups and community organisations. Our health and its care is now a collaborative endeavour in which we are involved actively and with responsibility. Self-management is increasingly included in health policies. Researching and understanding whether such interventions work, which components work, what “dose” is needed and who they work for, is vital to our future health.

Are you a Twitter user? Tweet this!

References

1. Clark et al. Heart disease management by women: does intervention format matter? Health Educ Behav. 2009 Apr;36(2):394-409. Epub 2007 Dec 15.
   DOI: 10.1177/1090198107309458
   View abstract
2. Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003 Aug;26(1):1-7.
   View abstract

Other Articles You May Like

• New Genes Associated with Blood Pressure and Hypertension
• Meat Consumption and Mortality Risk
• Pharmacogenetic Algorithm Accurately Predicts Warfarin Dosing
• Lifetime Immunity From the Flu
• Clearing Up Concerns Over Vicks VapoRub

Faith is a PhD-trained research psychologist in health behaviors and is currently involved in studies at the Applied Research Centre for Health and Lifestyle Interventions at Coventry University. Her research interests include quality of life measurement, promotion of self-management, intervention development and cross-cultural psychology.

She brings to Highlight HEALTH a keen interest in quality of life measurement, general health self-management and HIV research.

You can follow Faith on Twitter @Fam6. You can also follow us via the Highlight HEALTH Twitter account @HighlightHEALTH.

Welcome Faith!

Other Articles You May Like

• Viral-based Human Disease and the Nobel Prize for Medicine
• World AIDS Day
• Merck HIV Vaccine Increases Risk of HIV Infection
• Definition of Health

Are you a Twitter user? Tweet this!

Other Articles You May Like

• New Genes Associated with Blood Pressure and Hypertension
• Science and the Swine Flu
• Highlight HEALTH Summer Survival Guide
• Caffeine May Prevent Heart Disease in the Elderly

By way of comparison, the Center for Scientific Review (CSR) reviewed 27,360 Research Project Grants (R01s) and 9,483 Exploratory/Developmental Research Grants (R21s) for the entire year of 2008 [2]. Over the next few months, the CSR will check the submitted Challenge Grant applications for compliance and then review them in a two-phase process. Reviewers with expertise in the specific Challenge Areas (listed below) will do the first phase reviews, followed by a study section comprised of researchers who will focus on each application’s overall significance and impact. The earliest anticipated start date for those grants funded is September 30th, 2009.

The new program will support research on a range of Challenge Areas that focus on specific knowledge gaps, scientific opportunities, new technologies, data generation or research methods that would benefit from a rush of funds to quickly advance the area in significant ways. The areas include:

• Behavior, Behavioral Change, and Prevention
• Bioethics
• Biomarker Discovery and Validation
• Clinical Research
• Comparative Effectiveness Research (CER)
• Enabling Technologies
• Enhancing Clinical Trials
• Genomics
• Health Disparities
• Information Technology for Processing Health Care Data
• Regenerative Medicine
• Science, Technology, Engineering and Mathematics Education (STEM)
• Smart Biomaterials - Theranostics
• Stem Cells
• Translational Science

Acting NIH Director Raynard S. Kington, M.D., Ph.D. said [1]:

These are exciting times for biomedical research and NIH. We issued the Challenge Grant Request for Applications and received the largest response in our history from the scientific community, both in terms of applications and assistance with the peer review process. Through the Challenge Grants, NIH will invest in targeted research of the highest quality that will impact both economic growth and human health.

However, the unprecedented number of applications is putting a huge strain on the peer review process at the NIH. Some suggest that the influx of applications will “overwhelm the NIH’s capacity to conduct adequate, high-quality reviews” [3]. What’s more, with a paltry funding rate of ~1% compared to the ~20% for regular NIH grants, unfunded Challenge Grants are likely to be resubmitted as Research Project Grants (R01s) later this year. NIH peer-review advisory committee officials predict that the increased number of R01 grants will significantly reduce the percentage of fundable applications in the fall [4]. This “ripple effect” may negatively impact paylines - the percentage of fundable grant applications - for sometime.

What’s more, the recently announced U.S. FY2010 budget increases NIH funding by a meager 1.5% - about $442 million - over the 2009 budget, excluding the $10.4 billion received this year in stimulus spending [5]. This continues a trend of flat or below-inflation funding for the NIH since 2003. Health and Human Services Secretary Kathleen Sebelius claims that since the NIH received $10.4 billion from the Recovery Act this year, they won’t need “additional resources” in 2010 [6].

This story is far from over. Yesterday, Senator Arlen Specter chastised Sebelius at a Senate subcommittee hearing regarding the scant increase in NIH funding for next year, saying [7]:

I would urge you to take another look at that figure. [...] The 10 billion dollars, which was added in the stimulus package, has created an enormous wave of excitement of young people. We are in jeopardy of losing a generation of young research scientists and I think we have to maintain the growth rate. We talk about cutting down the costs of healthcare. What better way on the cost factor than to prevent illness. [...] The stimulus package and that $10 billion ought not to be looked at for the regular funding - that is extra. It was designed to create 70,000 new jobs for the two year period with a specific target that the President asked for and that the Congress responded in an affirmative way. [...] We were looking for that to stimulate the economy and for jobs. I couldn’t tell you line-by-line on all the other measured items but I believe that is was not a generalization that the stimulus would be used in place of future year’s funding. We’d like to maintain NIH funding on its own.

Are you a Twitter user? Tweet this!

References

1. NIH Receives 20,000 Applications for Challenge Grants Through the Recovery Act. U.S. Department of Health and Human Services, NIH News. 2009 Jun 8.
2. Challenges Continue to Mount at NIH. Medical Writing, Editing & Grantsmanship. 2009 May 5.
3. Breakthrough science can’t be rushed. Boston Globe. 2009 May 15.
4. Grant applications swamp agency. Nature News. 2009 June 9.
5. Science scores in 2010 US budget. The Scientist. 2009 May 7.
6. Flush with recovery money, NIH gets flat budget. ScienceInsider. 2009 May 7.
7. Senate Appropriations Subcmte. Hearing with HHS Sec. Sebelius. C-Span. 2009 Jun 9.

Other Articles You May Like

• U.S. Encourages Evidence-based Medicine in Economic Stimulus
• Support Biomedical Research in the Economic Stimulus Package
• NIH Increases Support for High-risk Large-impact Biomedical Research
• Funding of Childhood Cancer, NF Research in Jeopardy
• Flat Funding of Biomedical Research: The Threat to America’s Health

Related articles

• Core Biomedical Research Software and Web 2.0 Tools
• Health 2.0 Highlights - February 9th, 2009
• Highlight HEALTH 2.0 - Year in Review 2008
• Medicine 2.0 #27 - Communication is Key
• Sharing Genes on the Social Web: PatientsLikeMe ALS Genetics Search Engine

The innovative campaign to bring attention to research is the brainchild of Meryl Comer, president of the Geoffrey Beene Gives Back Alzheimer’s Initiative, a philanthropic wing of the Geoffrey Beene menswear label, which donates all its net profits to support medical and educational research and outreach. Rock Stars of Science launched with a 6-page photo spread in the June issue of GQ Magazine, the popular men’s fashion magazine.

The print ad campaign is supported by the website www.rockstarsofscience.org, which will include behind-the-sciences videos and profile the scientists, their teams and research institutions. Readers will also be able to nominate their own Rock Stars of Science and sign a declaration calling for more funding in science research.

Rock Stars of Science features some of the nation’s leading biomedical researchers in areas like cancer, HIV-AIDS, heart disease, alzheimer’s disease, genetics and personalized medicine. Scientists in the multi-page sponsored promotion include:

• Francis S. Collins, M.D., Ph.D., former Director of the National Human Genome Research Institute and likely the next head of the National Institutes of Health
• Anthony S. Fauci, M.D., Director of the National Institute of Allergies and Infectious Diseases
• Jeffrey Cummings, M.D., Neurologist at the University of California, Los Angeles
• Dale Schenk, Ph.D., Chief Scientific Officer at Elan Pharmaceuticals
• Eric J. Topol, M.D., Cardiologist at Scripps Translational Science Institution
• Harold Varmus, M.D., President of the Memorial Sloan-Kettering Cancer Center
• Ron Peterson, M.D., Ph.D., Professor at Mayo Clinic
• David B. Agus, M.D., Professor at Keck School of Medicine, University of Southern California
• Rudi Tanzi, Ph.D., Professor at Harvard Medical School
• Steven DeKosky, M.D., Dean of the University of Virginia School of Medicine
• Sam Gandy, M.D., Ph.D., Professor at Mount Sinai Alzheimer’s Disease Research Center

Geoffrey Beene sells strictly men’s clothing, so only male scientists were photographed for the campaign. Meryl Comer said that she hopes to photograph women for the “next round” of the campaign.

Rock Stars of Science was inspired by a public opinion survey conducted last year that found that nearly half of Americans couldn’t name Albert Einstein, Stephen Hawking or any other current scientist as a science role model for today?s youth [2]. Only 4% could name a living scientist such as Hawking or Bill Nye. The survey, done on behalf of Chicago’s Museum of Science and Industry and endorsed by the national organization, Research!America, found that the Public Loves Science But Ignores the Scientist. Indeed, 87% of U.S. adults agree they personally benefit from science every day. But when it comes to grasping science concepts, most admit they?re not sure they get it. Only one in four respondents feel they have a good understanding of science. Even worse, Americans are not impressed with how seriously America is taking science and the education children are receiving in science. In fact, 70% of Americans believe that America is not currently the world leader in science. Almost all U.S. adults agree that this is a detriment to our nation ? 96% say it is important for the U.S. to be a leader in science education.

More about the survey “The State of Science in America”, including a fact sheet and methodology, can be found at www.stateofscience.org.

According to Dr. Francis S. Collins [1]:

Scientists like to tell ourselves that we are too busy to worry about image. But the reality is that our work only has a chance of making a difference if we build a much broader base of popular support for medical research than currently exists in this country. That has to include more public pressure for congressional funding of research and more commitment to developing scientific leadership for the next century.

Being a rock star is about the same amps, thunder, and art it’s always been, but these days a rock star can be anyone whose genius moves the crowd ? whether they’re onstage or in the lab.

Are you a Twitter user? Tweet this!

References

1. will.i.am, Sheryl Crow, Seal, Joe Perry and Josh Grobin Shine a Spotlight on the Top Rock Stars of Science in GQ’s Campaign for Geoffrey Beene Gives Back. QQConnects.com press release. 2009 May 25
2. Einstein may outrank Britney Spears but survey shows science education needs help in United States. Museum of Science and Industry, 2008 Mar 20.

Other Articles You May Like

• A New Era for Stem Cell Research and Scientific Integrity
• U.S. Encourages Evidence-based Medicine in Economic Stimulus
• Support Biomedical Research in the Economic Stimulus Package
• NIH Increases Support for High-risk Large-impact Biomedical Research
• Funding of Childhood Cancer, NF Research in Jeopardy

High blood pressure or hypertension affects more than one in three people worldwide and is a major cause of strokes, heart attacks and heart failure [1]. The degree with which blood pressure traits can be inherited suggests a genetic component. However, limited consistent evidence of genes associated with blood pressure have been produced. A new study in the journal Nature Genetics reports for the first time a number of genes showing significant associations with blood pressure and hypertension across the genome [2].

Although large-scale genome-wide association studies (GWAS) have been used successfully to identify genes associated with common diseases and traits, studies on blood pressure or hypertension have failed to identify loci at a genome-wide significant threshold (p-value < 5 x 10^-8). The significance of GWAS data relies on several variables, including the accuracy of phenotypic measures, density of markers and size of the study population. Thus, if blood pressure variation in the general population is due to multiple genetic factors with small effects, a very large sample size is needed to identify them.

Researchers at the Johns Hopkins University School of Medicine, along with an international team of collaborators, established the Cohorts for Heart and Aging Research in Genome Epidemiology (CHARGE) Consortium to address the need for a very large sample size. The CHARGE Consortium was formed to “facilitate genome-wide association study meta-analyses and replication opportunities among multiple large and well-phenotyped longitudinal cohort studies.” In other words, they’re combining data from a number of large GWAS studies that collect data in a standardized fashion to perform a “study of studies”. The Consortium consists of almost 30,000 people of European descent whose average systolic blood pressure (meaning the blood pressure when the heart is contracting) ranged from 118 mm Hg to 143 mm Hg and average diastolic blood pressure (meaning the blood pressure when the heart relaxes between beats) ranged from 72 mm Hg to 83 mm Hg.

Using data from the CHARGE Consortium, scientists report that they have identified a number of single nucleotide polymorphisms (SNPs) for blood pressure and hypertension that just missed the significance threshold for GWAS.

The top ten CHARGE SNPs for systolic blood pressure, diastolic blood pressure and hypertension were then included in a joint meta-analysis with the Global Blood Pressure Genetics (Global BPgen) Consortium consisting of another 34,000 people of European ancestry published in the same issue of the journal Nature Genetics [4]. Eleven CHARGE genes showed significant associations across the genome, attaining genome-wide significance (p-value < 5 x 10^-8).

Four CHARGE loci attained genome-wide significance for systolic blood pressure:

• ATPase, Ca(2+)-transporting, Plasma membrane (ATP2B1)
• Cytochrome P450, Family 17, Subfamily A, Polypeptide 1 (CYP17A1)
• Pleckstrin homology domain-containing protein, Family A, Member 7 (PLEKHA7)
• SH2B adaptor protein 3 (SH2B3)

Six CHARGE loci attained genome-wide significance for diastolic blood pressure:

• ATPase, Ca(2+)-transporting, Plasma membrane (ATP2B1)
• Calcium channel, Voltage-dependent, Beta-2 subunit (CACNB2)
• Cytoplasmic tyrosine kinase (CSK) ? Unc51-like kinase 3 (ULK3)
• SH2B adaptor protein 3 (SH2B3)
• T-Box 3 (TBX3) ? T-Box 5 (TBX5)
• Unc51-like kinase 4 (ULK4)

One CHARGE loci attained genome-wide significance for hypertension:

• ATPase, Ca(2+)-transporting, Plasma membrane (ATP2B1)

According to Dr. Aravinda Chakravarti, Ph.D., head of the Center for Complex Disease Genomics in the McKusick-Nathans Institute of Genetic Medicine at Hopkins [3]:

Strikingly, none of the genes we identified as having common variation are part of the system we know about that regulates blood pressure ? the genes identified are not the ones targeted by current prescription drugs to control hypertension. If we can increase the number of genes implicated in blood pressure maintenance from the current 12 to the expected 50 in the next year, our understanding of the biology will change completely.

One gene in particular, ATP2B1 was linked to all three traits: systolic blood pressure, diastolic blood pressure and hypertension. The gene ATP2B1 encodes a plasma membrane protein that pumps calcium out of cells that line the vascular endothelium ? the thin layer of cells that line the inside of blood vessels. A high concentration of intracellular calcium causes endothelial cells to contract, constricting the blood vessel and reducing flow. This is why calcium channel blockers are frequently prescribed to lower blood pressure. Thus, it’s not surprising to find a calcium-specific protein pump in the list of genes associated with blood pressure and hypertension.

SH2B adaptor protein 3 (SH2B3) was associated with both systolic and diastolic blood pressure. The SH2B3 gene encodes a protein that mediates the interaction between extracellular receptors and intracellular signaling pathways. In addition, there is evidence that SH2B3 is involved in controlling adaptive immune responses. SH2B also regulates proliferation of several hematopoietic cell lineages (meaning blood cells).

Prevention

Consistently elevated blood pressure increases the risk of stroke, heart attack and kidney failure, among other conditions. Although genetics affects blood pressure, the environment ? diet, physical activity, stress ? also play a substantial role. You can take steps to prevent high blood pressure by adopting a healthy lifestyle. These steps include:

• Maintaining a healthy weight
• Being physically active
• Eating healthy (fruits, vegetables and lowfat dairy foods)
• Reducing salt and sodium in your diet
• If you drink alcohol, drink in moderation
• Quitting smoking

You can find more information on ?high blood pressure? and ?hypertension?, as well as advice and support, at iMedix.

Are you a Twitter user? Tweet this

References

1. High Blood Pressure. The American Heart Association. Accessed 2009 May 25.
2. Levy et al. Genome-wide association study of blood pressure and hypertension. Nat Genet. 2009 May 10. [Epub ahead of print] DOI: 10.1038/ng.384
   View abstract
3. New genes implicated in high blood pressure. Johns Hopkins Medicine press release. 2009 May 10.
4. Newton-Cheh et al. Genome-wide association study identifies eight loci associated with blood pressure. Nat Genet. 2009 May 10. [Epub ahead of print]
   View abstract

Other Articles You May Like

• More Education Decreases the Risk of Death
• Meat Consumption and Mortality Risk
• Pharmacogenetic Algorithm Accurately Predicts Warfarin Dosing
• Potential Location of Autism Genes Identified
• The Promise of Stem Cells to Repair the Heart

The Institute of Medicine Roundtable on Evidence-Based Medicine brings together leaders from key healthcare sectors to accelerate the collaborative work necessary to drive improvements in the effectiveness and efficiency of medical care. According to a Roundtable issue brief published earlier this year [2]:

While the U.S. has the highest per capita spending on health care of any industrialized nation, health outcomes lag those achieved elsewhere. The increasing costs of care are reducing access to care and constitute an ever heavier burden on employers and consumers. To address both the costs and the performance of the health care system, greater consensus will be required on what constitutes value in health care, and how to measure and increase that value.

Indeed, value is a relative term ? what’s valuable to me may not be valuable to you. With policymakers looking to overhaul the U.S. healthcare system, one way to quantify and compare the value of health programs, products and services is to ask consumers and taxpayers.

In the medical and healthcare industry, the U.S. government has assigned standard industry classification (SIC) codes to 27 programs, products and services for measuring economic activity in various sectors of the economy. The Spectrum Health Value Study, a national, online survey to ask Americans what they value when it comes to medical and healthcare products and services, is using those 27 SIC codes to identify the relative importance of each program, product or service. Additionally, the study aims to gain a better understanding of consumer use of each product and/or service, and to identify key segments of healthcare consumers.

Each quarter, beginning in January 2009, Spectrum, a Washington DC-based public relations and public affairs firm, will interview 1,000 repondents and ask them to identify from the 27 healthcare products, programs and services tested those ever used and how satisfied or not satisfied they were each. The results can be used to identify what Americans value in healthcare programs, products and services, and how the value changes over time.

Second quarter 2009 results

During the first two quarters of 2009, 2,025 respondents were interviewed. Half the respondents were men and half were women; half were married; 15% were African-American and 73% were White; 27% were aged 18 ? 34, 41% were aged 35 ? 54 and 33% were over the age of 55. The mean household income was $51,600. Sixty-one percent suffered from a health condition in the past year, and 78% of all respondents had insurance coverage.

The study found that four services: prescription drugs, over the counter drugs, dentist services and physician services have ‘ever been used’ by the vast majority of people; these are also the four services most commonly ‘used regularly’. Surgical services, over the counter drugs, dentist services, physician services, diagnostic laboratory services, prescription drugs and health/personal care goods were the highest rated services among the 27 tested. The lowest rated services included care for the elderly, health relief services, mental retardation services, mental health services, substance abuse services, preventive health services and individual social/health services.

Central to the Spectrum Health Value Study is the analysis of the relative value that respondents place on the 27 healthcare programs, products and services listed above. Each respondent was asked the following question several times, each time showing them a set of four different programs, products and services from the 27 being tested:

Recognizing that health care costs vary depending on your level of insurance coverage, and other health benefits that you either purchase or receive through an employer or other sources, and thinking about the actual dollars that are spent, listed below are four health care services with costs that you and other individuals ultimately pay for either directly or indirectly. Of these four, which is the most important and which is the least important for you and your family as you spend your health care dollars?

The following programs, products and services were picked as ‘most important’ more often than not:

• Physician services
• Medical services at a hospital
• Emergency care services
• Prescription drugs
• Dentist services
• Outpatient services
• Diagnostic laboratory services
• Surgical services
• Preventive health services
• Medical research
• Over the counter drugs
• Health/personal care goods
• Individual social/health services

Afterward, respondents were shown the following statement:

The cost of health care benefits and services for Americans is ? one way or the other ? ultimately paid for by individuals who contribute in various ways. These various types of payments include insurance policy premiums that people pay, income and sales taxes people pay, employer deductions from employees? paychecks, an individual?s out-of-pocket expenses or co-pays, as well as payments or personal charitable contributions to health providers. In summary, whatever the combination or method of funding for health care, the ultimate payer is the individual.

Sixty-nine percent of respondents agreed that the cost of healthcare benefits and services are ultimately paid for by individuals who contribute in various ways. People who suffer from a health condition were statistically more likely to answer that they strongly agreed with the statement than were people who do not have a health condition.

Several notable points:

• Although respondents were not asked how much they value access to healthcare, those products and services associated with access were highest ranked in the analysis: physician services, medical services at a hospital, and emergency care services.
• Although Americans strongly value preventive health services, they do not use them on a regular basis. When preventive health services are used, Americans are not very satisfied with the quality service.
• Despite the attention being raised around the obesity epidemic, Americans neither value nor use nutrition services. When nutrition services are used, they are not considered very satisfactory.

Spectrum plans to update the study findings each quarter. Additional details as well as access to the full report can be read at http://www.healthvaluestudy.com/. Several summary reports are available (for each page below, click on ‘Download Full Report’):

• The Spectrum Health Value Study: An Overview
• Access: the Health Care Product that Americans Value Most
• The Value and Use of Preventive and Wellness Health Services
• Those Who Suffer: The Effect of Chronic Illness on Health Care Value
• Examining the Concerns of the “Anxious Insured”: Lessons for Health Reform

Are you a Twitter user? Tweet this!

References

1. The Spectrum Health Value Study. Spectrum. Accessed 2009 May 18.
2. Institute of Medicine of the National Academies. Roundtable on Evidence Based Medicine. Value in Health Care; accounting for cost, quality, safety, outcomes and innovations. 2009 March.

Other Articles You May Like

• Living Healthy Isn’t Cost Saving, It’s Cost Effective
• SCHIP Funding and Fiscal Irresponsibility

The savings — an estimated $2 trillion over the next decade — would come from changes in the public-private partnership and include:

• Administrative standardization, simplification and transparency.
• Aligning quality and efficiency incentives among providers to reduce over- and under-use of healthcare.
• Encouraging coordinated care and adherence to evidence-based best practices and therapies.
• Reducing the cost of doing business by developing technology and regulatory reform.

Although the proposed health expenditure savings is small, experts say it’s significant [2]. The very fact that health industry leaders have stepped forward to voluntarily restrain costs is itself encouraging; these are the same groups that opposed the healthcare reforms proposed by President Clinton in the 1990s.

The growing burden of the American healthcare system

Indeed, with growing costs reform must come to the American healthcare system. A recent report by the Centers for Medicare and Medicaid Services (CMS) forecasts that growth in U.S. healthcare spending is expected to significantly outpace gross domestic product (GDP) growth in 2008 and 2009 due to the recession [3]. Between 2008 and 2018, the average annual spending growth by public payers (7.2%) is projected to outpace that of private payers (5.3%); as such, national healthcare spending is expected to reach $4.4 trillion and comprise 20.3% of GDP by 2018 [4].

To put those numbers in perspective, in 2008, national health spending was $2.4 trillion and comprised 16.6% of GDP.

What’s not being reported by the major media and perhaps the most frightening is that just two years ago, the Organization for Economic Cooperation and Development (OECD) projected that U.S. healthcare costs would consume approximately 20% of GDP by 2050 with dire consequences. We’re now looking at that occuring within the next decade.

Who’s job is healthcare anyway?

In 2007, U.S. households contributed $660.3 billion to healthcare spending, more than private business, state and local government, or the federal government [4]. Nevertheless, private business still contributed almost 60% more to private health insurance than households. An commentary on American Public Media’s Marketplace entitled Health care should be government’s job recently addressed the problem of U.S. corporations paying more for healthcare benefits than they’re earning in profits. In an age when U.S. companies can no longer afford to pay for health benefits, Matt Miller, senior fellow at the Center for American Progress and author of the book, “The Tyranny of Dead Ideas“, suggests that the larger truth is that “while having health insurance is crucial, it’s time we stopped looking to our companies instead of our country to help us obtain it” [5].

Miller continues, saying that:

America is the only advanced nation that operates much of its welfare state through corporations. This may have made sense 50 years ago, when medicine was cheap, a single breadwinner worked at a big company for 35 years, and American business dominated the world economy so that companies could pass on, through higher prices, the cost of much of the country’s safety net. But those days are gone. Today people switch jobs 10 times by the age of 40, and sky-high health costs make U.S. firms uncompetitive. Meanwhile, our archaic link between jobs and health care helps explain why 50 million people are uninsured, with millions more just a pink slip away from medical bankruptcy.

More about this proposal can be found in a Fortune editorial written by Miller in 2007 entitled Opening the Capitalist Mind. His commentary offers an interesting perspective on the linking of healthcare to jobs.

What’s your opinion? If you could reform one aspect of the U.S. healthcare system, what would it be?

Are you a Twitter user? Tweet this!

References

1. AMA to President Obama: All Americans should have access to affordable, high quality health care services. American Medical Association, Letters to the Editor. 2009 May 11.
2. Health care cutting for stake in reform. Marketplace, American Public Media. 2009 May 11.
3. National Health Expenditure Data. Centers for Medicare & Medicaid Services. Accessed 2009 May 11.
4. Health Care Costs 101, 2009 Edition. California Health Care Foundation. 2009 April.
5. Health care should be government’s job. Marketplace, American Public Media. 2009 May 11.

Other Articles You May Like

• I.O.U.S.A. One Nation Under Stress and In Debt
• Viral-based Human Disease and the Nobel Prize for Medicine
• Funding of Childhood Cancer, NF Research in Jeopardy
• Flat Funding of Biomedical Research: The Threat to America’s Health
• Living Healthy Isn’t Cost Saving, It’s Cost Effective

Kids learn early on in preschool that to truly prevent the spread of germs, you’ve got to wash your hands. Nevertheless, a dab of soap and a quick rinse isn’t effective. The key is to wash your hands for at least 20 seconds to ensure that you’ve removed the microbes. By rubbing your hands with soapy water, you pull dirt and oil from your skin. The soap lather suspends any germs trapped inside and are then washed away when rinsing.

The Right Way to Wash Your Hands

When washing you hands with soap and water, follow these steps:

1. Wet your hands and wrists with warm running water and apply soap.
2. Rub your hands, including the fingers, palm to palm in a circular fashion.
3. With palms still together, intertwine the fingers and rub in between them.
4. In a circular fashion, rub the back of each hand with the opposite palm, making sure not to ignore the knuckles and fingers.
5. Rub each thumb by gripping it with the opposite hand.
6. Continue washing hands for 20 seconds. Here’s a trick: sing the ABC’s to yourself.
7. Rinse your hands and wrists thoroughly under warm running water. Keep your hands lower than your elbows to avoid water flowing up the arms and then back down onto the hands, contaminating them.
8. Don’t turn off the water! Dry your hands completely using a clean or disposable towel.
9. Using the towel, turn off the faucet. If in a public restroom, use the towel to grasp the door handle and open the door, then discard the towel.

If soap and water aren’t available, use an alcohol-based hand sanitizer.

While alcohol-based hand sanitizers reduce the number of germs on skin, they aren’t necessarily more effective at reducing influenza A H1N1 virus on human hands. A recent study evaluated the effectiveness of routine hand hygiene against live human influenza A virus H1N1 using soap and water hand washing or one of three different types of alcohol-based hand rubs (61.5% ethanol gel, 70% ethanol plus 0.5% chlorhexidine solution, or 70% isopropanol plus 0.5% chlorhexidine solution) [3]. Hand washing with soap and water was found to be statistically superior to all three alcohol-based treatments.

For a visual demonstration on the effectiveness of hand washing, check out the publication linked below from the University of Georgia College of Agriculture and Environmental Sciences. An experiment was performed to show the difference in the amount of bacteria on an unwashed hand, a rinsed hand, a washed hand and a sanitized hand. The experiment involved touching agar plates (special food used to grow bacteria in a laboratory) with or without hand hygiene and then incubating them for 24 hours. Food, Hands and Bacteria illustrates the importance not only of hand washing but washing for more than 20 seconds [4].

To promote the importance of proper handwashing, CDC-TV released a video late last year, “Put Your Hands Together,” in its “Health Matters” series, presented below.

Are you a Twitter user? Tweet this!

References

1. Swine flu could come back in more virulent form after summer, European experts say. BMJ 338:b1792. 2009 Apr 29.
2. Put Your Hands Together. National Center for Preparedness, Detection, and Control of Infectious Diseases (NCPDCID) and National Center for Zoonotic, Vector-Borne, and Enteric Diseases (NCZVED). 2008 Oct 13.
3. Grayson et al. Efficacy of soap and water and alcohol-based hand-rub preparations against live H1N1 influenza virus on the hands of human volunteers. Clin Infect Dis. 2009 Feb 1;48(3):285-91.
   View abstract
4. Food, Hands and Bacteria. Prepared by Estes Reynolds. Accessed 2009 May 6th

Other Articles You May Like

• Science and the Swine Flu
• Lifetime Immunity From the Flu
• The Flu, Your Health and the Importance of Vaccination
• Top 10 Places Cold and Flu Germs Hide
• The Best Way to Stay Healthy and Avoid Getting Sick

This is the kind of story that gets me out of bed before I go to work in a few hours at our small medical library and to try to get the news out of what should be a fascinating development in search, Health 2.0, Science 2.0 and public discussion of patient empowerment and in neurologic science generally. I have been sent through my connections at AltSearchEngines and Next Generation Science a link to the Marketwire press release “PatientsLikeMe Launches Genetics Search Engine for ALS Patients“.

I spent many hours in the amyotrophic lateral sclerosis community of Patients Like Me in 2007 — 2008 and still visit it occasionally. It is a remarkable instance of a close-knit group of people united by the personal tragedy of either having Lou Gehrig’s Disease (ALS) or caring for and/or about someone with it. The founders of Patients Like Me (PLM), Jamie and Ben Heywood, have since created similar online patient communities for Parkinson?s Disease, Multiple Sclerosis and so on.

I briefly met Ben Heywood at a recent Health 2.0 conference. Both he and Jamie are frequent speakers at Health 2.0 and Web 2.0-related gatherings and have been the subject of books and documentaries. The documentary So Much So Fast shows the courageous struggle their brother Stephen made against the ravages of ALS. The solidarity and love his family showed in that struggle is one of the most moving films ever made and should be viewed by literally anyone in the health sciences, encompassing as it does the minutiae of confronting ever growing disability and the quest to obtain accurate medical information in the Internet Age. The Heywood brothers have accomplished remarkable things across a variety of fields, notably in prodding the research establish to fast track research in ALS and to engage in far more transparent practices. They and men like Augie Nieto are the kind of people that leave one feeling that individuals can make a difference even in the face of such frightening specters as a diagnosis of ALS.

But I do have my qualms and concerns about some of the PLM initiatives. Even when papers about it appear in the standard medical literature in PubMed, the authors of the papers are usually affiliated in some way with PLM. It would be nice if there were at least a few by neurologists who have no relationship at all to PLM that reported on advances made as a result of the data acquired from the self-reports that PLM members upload to PLM databases.

The search engine is simply called the Genetics Search Engine, although it covers only ALS and thus is likely to create some branding confusion.

The PLM blog post announcing the launch of the new search engine states: “Today, we’re announcing the launch of our Genetics Search Engine for people with ALS. Imagine finding other patients just like you, down to the genetic level. Patients in our ALS community can now do that. (For patients who don’t see their genetic mutation right now, that’s alright. They can be the first with that genetic mutation to join our community and share information about the disease.) What does sharing genetics mean for research? By capturing data on familial ALS patients’ known genetics, such as the A4V or D90A mutations in superoxide dismutase 1 (SOD1) and the P56S mutation in vesicle-associated membrane protein-associated protein B (VAPB), we can learn more about the cause and effects of every kind of ALS and better our chances of advancing research and finding new treatments. Our goal in launching the Genetics Search Engine (and other upgrades like it) is to help patients find others just like them and enhance our understanding of the phenotype of each genetic mutation (i.e., different causes of ALS have faster or slower disease progression).”

This brings up some interesting issues:

• As noted, there is the matter of branding. The wording “… other upgrades like it” suggests that this is the first of what may become a series of search engines for genetic mutations. That is an intriguing development and illustrates the genuine knack for marketing and technological innovation that has always made PLM a leader in the patient social networking space even as other such communities (such as Trusera) with much less drive to actually contribute to the medical science related to the travails of members have struggled to attract and retain users.

• The Genetics Search Engine does not appear particularly innovative or interesting vis-a-vis search technology. It seems, indeed, to be fairly unspectacular and rudimentary in that respect. But it is certainly more handsome and engaging than ALSOD: the Amyotrophic Lateral Sclerosis Online Database, which covers only SOD1 mutations and is designed for medical professionals, not patients and the general public.

• The wording “Imagine finding other patients just like you, down to the genetic level” is quite fascinating. ALS is a rare disorder and now patients can find in that small group an even smaller group and, now, so can researchers. This has all kinds of implications for organizing patients into lobbying groups for research into that particular mutation. That might actually advance research, given that the intense study of one gene or one mutation could benefit the entire ALS population. Alternatively, it could hinder advancement if a vocal group successfully wins earmarks for what turn out to be blind alleys. In any case, it is a brave new world in which people can form political, emotional and social bonds on the basis of genetic mutations. This is a good thing for public education in medical matters and public discussion of important scientific and bioethical matters.

• The development of the search engine and what becomes of the data is something that all those intrigued by the era of personalized medicine will watch with intense interest. Some argue that such data will prove of limited utility for decades and that it is cruel and deceptive to suggest to patients that hours spent mastering the arcana of genetics will improve their short-term prospects and day-to-day quality of life. Indeed, part of the marketing muddle is that the press release does not make the distinction clear between familial ALS and the sporadic type, the former being much rarer. Jamie Heywood is quoted as saying:

  Beyond the research implications of what this means today, if you’re a patient with familial ALS, you can now use this information to make better decisions about your healthcare and learn from the experiences of others like you.

  But that group is a small subset of the greater ALS patient population as a whole and the press release makes it sound like the Genetics Search Engine is a potential boon for all ALS patients. It could be, but that isn?t made clear.

But one should not complain too much given the obvious solace and genuine enjoyment members find in PLM and the impressive amount of useful information exchanged there on matters of nutrition, respiratory care, assistive technology and such, necessary in the care of patients with this illness. The fact that PLM has 3,400 members worldwide alone is impressive given that there only an estimated 30,000 people with the disease in the U.S. in any given year.

It will be interesting to see what public comment discussion is engendered by this development vis-a-vis patient education and genomics, and the ethical and health information management issues raised by patients taking an ever more intense interest in the building blocks of their very beings and expecting frontline clinicians to treat them by utilizing such data.

This not just an ALS story. This is a new era in medicine.

About the author: Hope Leman is the cofounder of Next Generation Science, which follows the intersection of science, technology and information, and a writer for AltSearchEngines, which covers hundreds of alternative / niche search engines. She works in a medical library as a library technical specialist and is the web administrator of ScanGrants. Hope is also a student in the Master of Library and Information Science (MLIS) program at the University of Pittsburgh.

Related articles

• Highlight HEALTH 2.0 - Year in Review 2008
• YouTube as a Source of Health Misinformation
• Social Networks and Health
• Health 2.0 Highlights - February 9th, 2009
• Medicine 2.0 #10 - Medicine and the Second Generation of Internet-based Services

Consumer health sites are all over the Web and more and more of the content they are producing is working its way into search engine results on health-related topics. Some of this material is solid enough, but much is simply banter or commiseration of one heathcare consumer to another. Knowing ahead of time about these sites can save power searchers in health matters time and prevent ill-considered clicking on what is almost certainly likely to be fluff or outright rubbish.

OrganizedWisdom is one such consumer health site and indeed if you go by its notable presence at conferences such as Health 2.0, it is a market leader in this space. It certainly excels at parlaying a bargain basement marketing gimmick, its WisdomCards, into a reputation for business savvy.

On its home page, the peel away top right corner reveals that WisdomCards are “Your guide to the best health resources” and touts “We do the Searching for you!”

Now, I don’t really get the appeal of the whole WisdomCard thing. Basically, each WisdomCard is simply a page of results organized in much the same way as you might find on MedlinePlus, say, or RightHealth.

Moreover, the “hand-crafted by experts” part doesn?t really inspire confidence. Take the WisdomCard for ALS, for instance. Clicking on “About this WisdomCard” reveals that the card was contributed by Tonya J. and reviewed by Pat. However, there is no information about who Tonya J. or Pat are. I was able to find information about the composition of the OrganizedWisdom Physician Review Team. Consisting of four medical doctors, OrganizedWisdom’s Physician Review Board is “responsible for training, educating and guiding all our Guides. In addition, we take great care in hiring people who have extensive health backgrounds, personal experience with health issues, or who may have served as caregivers, health advocates or health professionals.”

Nevertheless, given that credibility is a fairly basic component of consumer health searching on the Web, it is fairly amazing that OrganizedWisdom has received such positive coverage in the business press (the rah-rah, go team buzz it generates in such venues as the Health 2.0 conference is less surprising).

For instance, on the basics of cross-referencing OrganizedWisdom falls flat. Case in point: You can call up a WisdomCard on ALS provided that you call it ALS and not Amyotrophic Lateral Sclerosis and we are told once at the ALS WisdomCard to, “Try also: Muscular Dystrophy; Myasthenia Gravis; and …” (trails off there) but not Lou Gehrig’s Disease, which does not have a WisdomCard of its own, and not Motor Neuron Diseases, which is a topic allocated to a WisdomCard. And on that card you do at least get the last names of the contributor and the reviewer. The Motor Neuron Disease WisdomCard was contributed by Elisa Carter. According to her (self-listed?) health experience, she has spent 15 years working in the medical field as a Supervisor in a Hospital Admissions Department and has managed administrative staff for a large multi-physician office that included pediatricians, a cardiologist and an internist. The Motor Neuron Disease WisdomCard was approved by TaraS. According to her (self-listed?) health experience, “Her medical knowledge comes from years as a medical secretary and in administration for physicians’ offices specializing in internal/pulmonary medicine, orthodontics and pediatrics. She has also served as a health advocate and caregiver for people with disabilities, a role that brought her to a nuanced understanding of Web health search and online research.”

I am not against consumer health sites. Indeed, I get rather impatient with the persnickety attitude some in the medical library community take towards them. But it is unnerving to think that the “serial entrepreneurs” (as founders Steven Krein and Unity Stoakes style themselves) can generate such hype on the basis of some quite sloppy, not ready for prime time stuff as is on OrganizedWisdom. Call in a librarian, guys, to inject some order into the currently messy state of affairs in your WisdomCard world.

I decided to try to determine what qualifications guides (the term appears to cover both contributors and reviewers) must meet. The page Become a Guide outlines a three-step process to apply to become an OrganizedWisdom Guide. First you register with the site, then you fill out a Guide Application, providing as much information as possible about “any related experience, whether in paid or volunteer work, that will contribute to your success. OrganizedWisdom Guides need to be self-motivated, well organized, able to discriminate between good and bad information, and able to check their own work. And yes, spelling and attention to detail counts.” Applicants then take an open book test. At the bottom of the page is a list of reasons OrganizedWisdom rejects Guide applications:

• No relevant experience.
• Misspellings or poor grammar on application.
• Incorrect answers on Open Book Test.
• Applicant did not check “I am over 13 years old.”
• Applicant did not check “I agree to the Guide Terms of Service.”
• Applicant did not provide full name, address and telephone information which we need for payment verification.
• Applicant does not live in the United States (sorry, we can only accept U.S. applicants).

Although the results on the WisdomCards are acceptable, they are not noticeably better in terms of links or richness of multimedia content than you would find on RightHealth and certainly lack the authoritativeness of MedlinePlus. Additionally, the web site has has navigation problems. For instance, it not always clear when you are in a WisdomCard nor how to get to one, except by browsing through an alphabetical list, and even that is not reliable as there seemed to be a WisdomCard for the man Lou Gehrig but not for the disease named after him, but the biographical entry does not appear to be in the alphabetical list and so on.

All in all, much ado about very little in the case of OrganizedWisdom.

About the author: Hope Leman is the cofounder of Next Generation Science, which follows the intersection of science, technology and information, and a writer for AltSearchEngines, which covers hundreds of alternative / niche search engines. She works in a medical library as a library technical specialist and is the web administrator of ScanGrants. Hope is also a student in the Master of Library and Information Science (MLIS) program at the University of Pittsburgh.

Additional health search resources are listed in the Highlight HEALTH Web Directory.

Related articles

• Sharing Genes on the Social Web: PatientsLikeMe ALS Genetics Search Engine
• Health 2.0 Highlights - February 9th, 2009
• Highlight HEALTH 2.0 - Year in Review 2008
• Online Patient Community Battle for Survival: MDJunction
• Following the Tweets of Health

Related articles

• YouTube as a Source of Health Misinformation
• Medicine 2.0 #10 - Medicine and the Second Generation of Internet-based Services
• Health 2.0 Highlights - June 6th, 2009
• Sharing Genes on the Social Web: PatientsLikeMe ALS Genetics Search Engine
• Highlight HEALTH 2.0 - Year in Review 2008

Just try keeping track of the plethora of players in the online patient community / health-focused social network scene. Many patient communities have been started (e.g. MDJunction) by entrepreneurs who were spurred to create their sites by the difficulties friends or relatives had in obtaining emotional and social support during prolonged battles with illness.

HopeCube is one such site. HopeCube, like its rivals Trusera and MDJunction, has virtually no presence of medical professionals (unlike the heavy presence of such at sites such as MedHelp). At HopeCube, there are a mere six MDs listed under the category “Health Professionals” and the others on that page were providers of the New Age variety (e.g. relationship counselors — misspelled on the site as ?counseler? — and fitness trainers). The details on this limited number were sketchy and many of the links on the page were dead. One of the doctors listed is Dr. David Kim of Beverly Hills Plastic Surgery, which gives you an inkling of HopeCube’s target audience.

Rather interestingly, unlike the blog of Patients Like Me and that of OrganizedWisdom, which are slick marketing tools, HopeCube’s blog is a forum for HopeCube members who, incidentally, don?t seem to be into tagging their entries given that the vast majority of them fall under the unhelpful rubric “Uncategorized.” HopeCube’s blog appears to be the main method of participation for many of the members. But the participation is asymmetric in that the vast majority of entries have not elicited any comments.

HopeCube may not have the lineup of medical heavyweights that is a notable feature of MedHelp, but it does provide helpful links to authoritative sources. For instance, on the amyotrophic lateral sclerosis page the related links were to the Mayo Clinic, MedlinePlus and the ALS Association — all solid, reputable sources. There was also a handy pathway to recent stores on Neurology / Neuroscience News in the online news service, Medical News Today which is a very useful resource in and of itself and one which I have not seen on other consumer health sites or at rival online patient communities in particular.

But much of the rest of the site seems mundanely pre-Web 2.0 in many respects. Rather blah interface and much of the site is old-line discussion board question and answer stuff at the member to member level — a far cry from the medical authority-laden dialogues of MedHelp or of the longstanding easy camaraderie among the members of Patient Like Me. You just have to wonder when health consumers will say, “Enough already with one paragraph answers by Joe Average — I will just call my local public library or visit MedlinePlus.” I thought that maybe I was just not seeing a richer interactive experience because I had not registered, so I finally reluctantly did (which, admittedly, went smoothly enough). But I still didn?t see much that wowed me — the interactivity level of HopeCube is circa 2001.

I don?t think HopeCube has too bright a future and is pretty pedestrian on the whole. Those who want to get health information from other health consumers would be better off visiting the far livelier, content-rich Omgili Health.

About the author: Hope Leman is the cofounder of Next Generation Science, which follows the intersection of science, technology and information, and a writer for AltSearchEngines, which covers hundreds of alternative / niche search engines. She works in a medical library as a library technical specialist and is the web administrator of ScanGrants. Hope is also a student in the Master of Library and Information Science (MLIS) program at the University of Pittsburgh.

Additional patient social networks are listed in the Highlight HEALTH Web Directory.

Related articles

• Highlight HEALTH 2.0 - Year in Review 2008
• Online Patient Community Battle for Survival: MDJunction
• iMedix: Reliable Health Search and Patient-to-patient Social Network
• Diabetes 2.0

All of the Highlight HEALTH Network websites are now HONcode accredited:

• Highlight HEALTH
• The Highlight HEALTH Web Directory
• Highlight HEALTH 2.0

The Health On the Net (HON) Foundation is a non-profit international organization promoting and guiding the growing community of healthcare providers and consumers on the World Wide Web to sound, reliable health information and expertise through quality assessment and systematic and stringent peer review.

There are 8 principles of the HON Code of Conduct (HONcode):

1. Authority - Indicate the qualifications of the author(s).
2. Complementarity - Information should support, not replace, the doctor-patient relationship, which is the desired means of contact.
3. Privacy - Respect the privacy and confidentiality of personal data submitted to the site by the visitor.
4. Attribution - Cite the source(s) of published information, date and medical and health pages.
5. Justifiability - The website must back up claims relating to benefits and performance.
6. Transparency - Accessible presentation, accurate email contact of authors.
7. Financial disclosure - Sponsorship should be transparent and funding sources identified.
8. Advertising policy - Clearly distinguish advertising from editorial content.

Related articles

• No Related Post

Three websites make up the Highlight HEALTH Network:

• Highlight HEALTH 2.0
• Highlight HEALTH
• The Highlight HEALTH Web Directory

Each of these sites has a different purpose. Highlight HEALTH 2.0 is a group effort to follow the use of Web 2.0 in health and medicine (if you’re interested in writing a review about a social health network or co-blogging about the integration of Web 2.0 technologies into health and medicine, please let us know). Highlight HEALTH promotes advances in biomedical research to encourage health literacy. Lastly, the Highlight HEALTH Web Directory is an online reference guide for reliable health and medical information.

There are more ways than ever to connect with the Highlight HEALTH Network, including email/RSS, Twitter and Facebook. If you have an internet-enabled cell phone, Highlight HEALTH 2.0 can be accessed via the mobile web.

Top 5 most popular articles

Here are the most popular articles for 2008 (top 5 based on the number of page views/number of days posted):

1. Online Patient Community Battle for Survival: MDJunction
2. iMedix: Reliable Health Search and Patient-to-patient Social Network
3. Mednar Search ? and Hope said, “It is good.”
4. Following the Tweets of Health
5. Core Biomedical Research Software and Web 2.0 Tools

Thank you and Best of Health in the coming year!

Related articles

• Online Patient Community Battle for Survival: MDJunction
• Social Networks and Health
• Following the Tweets of Health
• iMedix: Reliable Health Search and Patient-to-patient Social Network
• YouTube as a Source of Health Misinformation

Welcome to the battle for survival among the online patient communities, a.k.a. health-focused social networks and patient support groups. Sometimes they are dedicated sites (e.g. Patients Like Me and Trusera), sometimes the patient communities are just one of the features of a greater health-focused site (e.g. RightHealth) and in some cases they form about half of the offerings of a health site (e.g. Healia, MedHelp). Not all are developing the levels of activity that will enable their communities to gain traction. Given the stiff competition, many of the primary health consumer online patient communities are dying on the vine. For example, as of this writing Healia?s Parkinson’s Disease Community consists of only 11 members, a small number for a fairly common disease.

Today we will take a look at MDJunction. According to the site, “… the ‘MD’ in MDJunction stands for Making a Difference.”

Immediate Online Patient Community

It certainly does seem to have quite a bit of recent activity, obviously a key indicator of the health of these sites. For instance, I am checking the site on a Sunday morning and on the home page a member of the Bipolar Type II Support Group posted just one second ago.

Oops — I just refreshed the page and now that has been bumped down to 15 minutes ago because of other even more recent entries. That’s certainly a high level of immediacy compared to an industry leader, Patients Like Me. I just checked the Patients Like Me Amyotrophic Lateral Sclerosis Community and the most recent entry was five minutes ago.

This illustrates an interesting difference between Patients Like Me and MDJunction: Patients Like Me treats each community as a separate entity (albeit under the Patients Like Me brand name), whereas portals like MDJunction show on the homepage what the most recent activity was in any of the communities (sometimes called forums, depending on the site). Indeed, sometimes forums are within communities, such as Patients Like Me, and sometimes they are distinct entities within the greater site, as with MedHelp. The nomenclature varies with each site, which might be one of the reasons why some sites are less trafficked and some communities devoid of members — it takes time to figure out how each works. Not only can you determine immediately on the homepage of MDJunction what is being discussed in detail, you can note such things as who has just joined the obesity group, who has just registered, who gave another user a hug and so on.

That five minutes ago of MDJunction certainly trumps by a long shot in terms of immediacy the “… about 14 hours ago” of Trusera.

Dead spaces, medical authority and user-generated content

However, there are definitely some dead spaces in MDJunction. The Amyotrophic Lateral Sclerosis Community, for instance, is utterly inert, save for some initial come-ons a year ago by MDJunction co-founder, Roy Lev. But that is true of almost every ALS community save that of Patients Like Me, given the amazingly strong loyalty the ALS patient community has shown to the first mover for an online patient community for that illness. MDJunction’s Parkinson’s Disease Support Group has 23 members and the most recent posting as of this writing was 12 hours ago. That’s fairly good for such sites in this fiercely competitive space.

One always fascinating aspect of the world of online patient communities is the general tone shown toward the medical establishment. For instance, MedHelp touts its ties to medical experts at prestigious institutions (e.g. the Cleveland Clinic). Patients Like Me features pleasant and skillful interjections by a resident nurse as well as commentary and answers by a neuroscientist, but otherwise medical authorities are absent. In contrast, the content of sites like MDJunction and Trusera is almost entirely user-generated, save for Lev’s fairly constant presence in various sections of the site. There are advantages to his omnipresence — it shows his commitment to the service, which is a nice bit of homey personalization compared to the infrequent appearances of Ben Heywood on Patients Like Me. But Lev’s ubiquity on MDJunction verges on hucksterism. It is up to users to determine how much involvement they want from the operators of a site.

Awareness ribbons

One rather interesting feature of MDJunction is the option for users to support a cause and increase awareness by wearing a ribbon. A chart delineates what colors of ribbons are designated for various diseases. For example, we read, “Burgundy ribbons are for myeloma, hospice care, Sepsis, APS (Antiphospholipid Antibody Syndrome), FVL, Thrombophilia, headaches and to support the Permanently Disabled” and “Blue ribbons are associated with Osteoporosis, ARDS, Osteogenesis Imperfecta, Child Abuse, Chronic Fatigue Syndrome, Colon Cancer Arthritis.” Users can affix icons of such ribbons to their comments on the site.

Conclusion

The ads in MDJunction are relatively unobtrusive. Given the punishing advertising climate these days, it will be hard for many of these sites to stay in business. MDJunction seems to have a fairly robust level of loyalty. It will be interesting to see how much of the discussion on medical topics generated on sites like MDJunction appears in search engines results. This is a new phenomenon that bears watching by those concerned about the possible dissemination of health misinformation on the Web.

About the author: Hope Leman is a writer for AltSearchEngines, which covers hundreds of alternative / niche search engines. She works in a medical library as a library technical specialist and is the web administrator of ScanGrants. Hope is a student in the Master of Library and Information Science (MLIS) program at the University of Pittsburgh.

Additional patient social networks and Health 2.0 resources are listed in the Highlight HEALTH Web Directory.

Related articles

• Highlight HEALTH 2.0 - Year in Review 2008
• iMedix: Reliable Health Search and Patient-to-patient Social Network
• Not Much Hope for HopeCube
• Diabetes 2.0
• Social Networks and Health

The new study, presented last month at the 2008 annual meeting of the North American Primary Care Research Group [2], evaluated the differences in emotional and informational social support content in online communities for cancers with low and high survival rates.

The researchers analyzed over 3,500 messages from 587 individuals in eight online support communities located within Yahoo!Groups and the Association of Cancer Online Resources (ACOR) websites for four different types of cancer with low or high five-year survival rates. Across all communities, there was a greater amount of emotional support than informational support.

High survival rate communities contained a greater proportion of emotional support than low survival rate communities (65% vs. 55%). In contrast, low survival rate communities contained a greater proportion of informational support than high survival rate communities (33% vs. 25%).

Participants in the study were members of support communities for four different types of cancer: lung cancer, melanoma, pancreatic cancer and thyroid cancer. They participated in eight different online communities and were all reviewed under the same time period.

According to the primary author of the study, Lorraine Buis, Ph.D. [3]:

When primary care providers refer individuals to online communities for support, they should be aware that there might be differing amounts of support based on the survival rate of a particular cancer.

According to the National Cancer Institute’s Surveillance Epidemiology and End Results (SEER) Cancer Statistics Review, which reports the most recent cancer incidence, mortality, survival, prevalence and lifetime risk statistics, from 1975 to 2005 cancer patients with thyroid cancer and melanoma of the skin had high survival rates (96.6% and 91.2% respectively) while lung cancer and pancreatic cancer had low survival rates (12.1% and 5.1% respectively) [4].

In addition to helping patients, online support communities help family and friends cope with the struggles that cancer presents. This is the first study to assess the influence of cancer patient survival rates on social support content in online communities for cancer.

A number of patient social networks are listed in the Highlight HEALTH Web Directory.

References

1. Buis et al. Relationship between cancer survival rate and social support within online communities for cancer. 2008 Annual Meeting of the North American Primary Care Research Group, Rio Grande, Puerto Rico.
2. 2008 Annual Meeting of the North American Primary Care Research Group (NAPCRG) Program. 2008 Nov 15 — 18.
3. Cancer survival rates impact type of Web communities used by patients. University of Michigan Health System press release. 2008 Nov 18.
4. SEER Cancer Statistics Review, 1975-2005, Age-adjusted SEER Incidence and U.S. Death Rates and 5-year Relative Survival Rates, National Cancer Institute. Bethesda, MD, based on November 2007 SEER data submission, posted to the SEER web site, 2008.

Related articles

• No Related Post

Mednar is here and it is good. Check it out medical librarians, public library staff, academic librarians who do life science searches, busy front-line clinicians, clinical researchers, medical school faculty, power searchers generally in the health sciences and anybody, indeed, who wants quick, authoritative results in health searching. Yet another impressive achievement of the firm Deep Web Technologies, which already has a stellar record of achievement providing the underlying technology of Scitopia.org, Science.gov, WorldWideScience.org and the brand new Biznar, a free, publicly available business research site. Check that one out, too.

Why is the firm called Deep Web Technologies and what is federated search, which is its specialty? Federated search is simply the capacity to search several online resources at the same time. The Deep Web is also called “The Invisible Web” and consists of gray literature and similar hard-to find content, such as heavy duty science and medical databases that the average search engines don’t tend to provide results from. That is where Deep Web Technologies comes in. Professional societies and the big players in federally-funded science search rely on it. It delivers sleek, elegant interfaces and solid search results. I like its stuff a lot. That is why I am up at 4:23 a.m. playing with it rather than sleeping before I have to get ready for my day job at around 7 a.m. Good technology should be exciting and something that compels you to get out of bed to go seek information about subjects you care about. Therefore, scientists, medical people and people who are ill or who love someone who is driven to seek information should take a spin in Mednar and the other products of Deep Web Technologies. They are the must-have tools of today and tomorrow.

Okay, enough rhapsodizing (couldn’t help it — it is that good). Why do I like Mednar so much?

Well, as someone who works in a medical library and spends many happy hours working in the kingdom of medical search tools, PubMed, I am always interested in seeing what else is out there in health sciences search. One thing I liked right away about Mednar was how it easy it was to set up an email alert on the latest results on my subject of choice, in this case my consuming interest amyotrophic lateral sclerosis. I have been receiving daily updates of the latest research on that subject from Mednar and they are quite fascinating. Now that might some strike some as not particularly novel or exciting (think Google Alerts), but it is really surprising how few options one has in terms of current awareness of authoritative (where Google falls down) daily bulletins and it never hurts to supplement the services one can get from PubMed. The one glitch in the email alerts is that when I click on some of the options I am taken to the log-in page of a resource I may not subscribe to. But at least I get the title to work with and can use other avenues to learn more about an article I might never have learned about otherwise. And if you follow a rare disease or even a common one that is making your life miserable, you don?t want to run the risk of missing out on key developments.

In that regard, Mednar is an extremely useful complement to PubMed in that there is a lag time before the very latest articles get into PubMed. Everything is vetted to the nth degree before it enters the hallowed halls of PubMed and while that is desirable and necessary, it also prevents timely notice of interesting developments or awareness of perhaps ultimately insignificant but nonetheless interesting, thought-provoking developments. By contrast, Mednar include among its results EurekAlerts and identifies them by the institution (e.g. Brandeis University) or organization (e.g. the American Academy of Neurology) that the press release concerned is discussing so that you don?t click on something of little interest. That?s an excellent way to monitor where the centers of research activity are in certain medical conditions and an easy method of keeping up in an engaging, entertaining way on what is happening now instead of waiting for a meta-analysis to appear in PubMed two years hence. You can learn a lot from press releases. For instance, in my search through the EurekAlerts in my search on ALS I came across this result about a touching article in the Journal of Palliative Medicine, something I might not have encountered otherwise. What I want from a search engine is for it to tell me something I don’t already know or that I would not have learned about from one of its rivals. Mednar does all of that.

Additionally, Mednar provides results by author, which enables users to quickly determine who seems to be the leading authority in a given field or at least someone who has published quite a bit in it.

Mednar also is a forgiving, patient envirnoment. For instance, I tried “proteomics in nephrology” but that resulted in much extraneous stuff. I then tried just “proteomics nephrology” and got tons of useful material. That is the mark of a good search engine. If you bumble and fumble and get nothing, trying different wording improves matters. Mednar definitely is on its way to becoming an outstanding launch pad for medical subject searching and it easy to see why frugal but astute purchases of services for government scientific agencies, demanding overseers of the databases of scientific societies and university libraries turn to Deep Web Technologies for prowess in search technology. Those are not easy audiences to win over and it has consistently done that. This is the state-of-the-art stuff, folks.

I wish had the brains of its CEO, Abe Lederman. I am in jaw-dropping, stupefied awe at the general excellence of the products of his firm. Anything that saves all of us time as we hunt for relevant data amidst overwhelming amounts of information on every conceivable aspect of disease day after day catches my attention and it has been caught today by Mednar. It searches many databases that PubMed and NLM Gateway do not, let alone other commercial search engines. That alone is a public service and I fondly hope that Elsevier and Springer and the other sci-tech publishers will start to see the value in working with innovative superstars in search and enlist them to render their superb content searchable. My wallet is open to good stuff in the sciences if I can find it and Mednar helps me find it. It is up to the sci-tech publishers to decide if they want to find eager, paying consumers of their content by working with Mednar. In the meantime, Mednar is educating us all about databases that we didn?t even know existed. Edifying those of us who like to think we know everything is noble work.

About the author: Hope Leman is a writer for AltSearchEngines, which covers hundreds of alternative / niche search engines. She works in a medical library as a library technical specialist and is the web administrator of ScanGrants. Hope is a student in the Master of Library and Information Science (MLIS) program at the University of Pittsburgh.

Additional health search resources are listed in the Highlight HEALTH Web Directory.

Related articles

• Highlight HEALTH 2.0 - Year in Review 2008
• iMedix: Reliable Health Search and Patient-to-patient Social Network
• Health Web 1.0, 2.0 and 3.0