The December 2012 issue of NIH News in Health is now available online! NIH News in Health is a monthly newsletter from the National Institutes of Health, part of the U.S. Department of Health and Human Services. The National Institutes of Health (NIH) plays a major role in finding better ways to diagnose, treat, cure or prevent diseases. The practical health information in NIH News in Health is reviewed by NIH’s medical experts and based on research conducted either by NIH’s own scientists or by our grantees at universities and medical schools around the country. This issue features:

• Don’t Just Sit There! Move for Your Health
• Counting Carbs? Understanding Glycemic Index and Glycemic Load
• Technique May Improve COPD Detection
• Videos Highlight Behavior and Health
• NIH Director’s Blog

NIH News in Health is available online in both HTML and PDF formats. Print copies are available free of charge for offices, clinics, community centers and libraries within the U.S.

Check out the November issue of NIH News in Health, the monthly newsletter bringing you practical health news and tips based on the latest NIH research. In this edition:

Your Microbes and You: The Good, Bad and Ugly
Trillions of microscopic creatures—like bacteria, fungi and viruses—are living in and on your body right now. We tend to focus on destroying bad microbes. But taking care of good ones may be even more important.

Gut Feelings About Gastritis: When Your Stomach’s Sick
Your stomach lining has an important job. It makes acid and proteins that help break down the foods you eat. But when the lining gets inflamed—a condition called gastritis—it can cause long-term problems.

Health Capsules:

• Brain Cleaning System Discovered
• Bilingual Booklet on Sports Injuries
• Featured Website: ClinicalTrials.gov

NIH News in Health is available online in HTML and PDF formats, and print subscriptions are available free of charge.

The usage of “digital volunteers” during disasters is growing in popularity, allowing volunteers with computer and information skills to participate from outside the affected region in supporting disaster response and recovery. One example of this effort is CrisisCamps, which bring together volunteers in information management, and web design and coding, to work on projects identified by federal and state agencies in response to specific events. In the aftermath of Hurricane Sandy, there are CrisisCamps occurring in various locations, including San Francisco. Find out if your area is hosting a CrisisCamp and how to volunteer! Virtual Operations Support Groups, also known as Virtual Operations Support Teams (VOST), are groups that make use of technology and social media tools to provide support to those at the scene of a disaster. VOSTs are activated to perform specific functions in support of affected organizations and jurisdictions. The web site includes a list of active teams in the US. The Standby Task Force is an international digital volunteer platform that uses an open source model for digital volunteering, with a specific focus on crisis mapping. The Red Cross Disaster Digital Volunteer training program includes the use of Radian6 Engagement Console software, and other necessary online platforms to monitor social media and news sources, in order to assist the Red Cross in its response efforts.

Increasing evidence suggests that there are benefits to actively involving patients and consumers in their health care. There is also growing interest in engaging patients and consumers more actively in the research process. Comparative effectiveness research (CER), patient-centered outcomes research (PCOR), and quality improvement (QI) all offer opportunities to engage patients in generating information that can be used to inform treatment decisions. A new seven-page resource, based on work conducted by AcademyHealth under the auspices of the Electronic Data Methods (EDM) Forum, and developed in coordination with patients, consumers, and health services researchers, outlines key opportunities for engagement in research, and proposes a set of activities to enable patients and consumers to become more active participants in the process of evidence generation. A Framework for Patient and Consumer Engagement in Evidence Generation is now available for download to an iPad through the iTunes app store. This publication can only be viewed using iBooks 2 or later on an iPad with iOS5 or later.

The Electronic Data Methods (EDM) Forum operates on a three-year grant from the Agency for Healthcare Research and Quality (AHRQ), to facilitate learning and foster collaboration across a set of CER projects, designed to build infrastructure and methods for collecting and analyzing prospective electronic clinical data. To ensure EDM Forum activities address a full spectrum of research needs, the EDM Forum seeks to obtain perspectives from a broad array of stakeholders, by encouraging an open and ongoing dialogue on their web site.

The ENCODE Project was planned as a follow-up to the Human Genome Project. The Human Genome Project sequenced the DNA that makes up the human genome; the ENCODE Project seeks to interpret this sequence. Coinciding with the completion of the Human Genome Project in 2003, the National Human Genome Research Institute (NHGRI) organized the launching of the ENCODE Project, as a worldwide effort involving more than 30 research groups and 400 scientists. The approximately 20,000 genes that provide instructions for making proteins account for only about 1% of the human genome. Researchers embarked on the ENCODE Project to figure out the purpose of the remaining 99% of the genome. Scientists discovered that more than 80 percent of this non-gene component of the genome, which was once considered “junk DNA,” actually has a role in regulating the activity of particular genes (gene expression).

Researchers think that changes in the regulation of gene activity may disrupt protein production and cell processes and result in disease. A goal of the ENCODE Project is to link variations in the expression of certain genes to the development of disease. The ENCODE Project has given researchers insight into how the human genome functions. As researchers learn more about the regulation of gene activity and how genes are expressed, the scientific community will be able to better understand how the entire genome can affect human health.

NHGRI recently announced updated results of the ENCODE project in a press release. Further detailed information about the findings are available from the ENCODE project portal. Published research findings are also available through the new web site, Nature Encode Explorer, which provides public access to scientific information collected from the ENCODE Project.

On September 14, 2012, the publication Government Health IT reported that HHS officials announced the release of MappyHealth, a new Web-based application tool available to public health officials. MappyHealth was the winning entry in a developers’ challenge competition, “Now Trending: #Health in My Community.” The challenge was sponsored by the HHS Office of the Assistant Secretary for Preparedness and Response (ASPR). Health officials can use data gained through the app to complement other health surveillance systems, to identify emerging health issues and potential public health emergencies in a community.

Currently, the top diseases being tracked by MappyHealth are the common cold, sexually transmitted infections (STIs), mosquito borne disease, pertussis, tuberculosis, influenza and gastroenteritis. The top five locations for these disease-tracking tweets are São Paulo, Rio de Janeiro, Orlando, Chicago and Los Angeles. The availability of MappyHealth provides a mechanism for local public health departments to effectively utilize social media to monitor disease trends as they occur in real time.

At the turn of the 21st century, several important reports and events designed to raise awareness of health disparities and describing initial efforts to reduce health disparities took place. The Surgeon General’s office released several reports that showed dramatic disparities in areas such as tobacco use and access to mental health services by race and ethnicity. Then legislation was enacted focusing on reducing health disparities, and creating the National Institute on Minority Health and Health Disparities, as part of NIH. In 2001, the Institue of Medicine released its landmark report, Crossing the Quality Chasm: A New Health System for the 21st Century, highlighting the importance of a focus on health care quality rather than a focus on access and cost issues.

Building upon these reports and events, the IOM held a workshop on April 8, 2010, to discuss progress made towards addressing health disparities, and focusing on the success of various federal initiatives to reduce health disparities. Today marks the release of the following document summarizing the workshop, How Far Have We Come in Reducing Health Disparities?: Progress Since 2000 – Workshop Summary.

On September 10, 2012, the Action Alliance, along with the U.S. Surgeon General, Dr. Regina Benjamin, released the revised National Strategy for Suicide Prevention (NSSP). The revised strategy emphasizes the role every American can play in protecting their friends, family members, and colleagues from suicide. It also provides guidance for schools, businesses, health systems, clinicians, and many other sectors that takes into account nearly a decade of research and other advancements in the field since the last strategy was published.

The NSSP features 13 goals and 60 objectives, with the themes that suicide prevention should:

• Foster positive public dialogue; counter shame, prejudice, and silence; and build public support for suicide prevention;
• Address the needs of vulnerable groups, be tailored to the cultural and situational contexts in which they are offered, and seek to eliminate disparities;
• Be coordinated and integrated with existing efforts addressing health and behavioral health, and ensure continuity of care;
• Promote changes in systems, policies, and environments that will support and facilitate the prevention of suicide and related problems;
• Bring together public health and behavioral health;
• Promote efforts to reduce access to lethal means among individuals with identified suicide risks;
• Apply the most up-to-date knowledge base for suicide prevention.

The overview, full report, fact sheet, and public service announcement are available on the National Strategy for Suicide Prevention website.

The US Department of Veterans Affairs National Center for PTSD, the National Child Traumatic Stress Network, the Substance Abuse and Mental Health Services Administration, and the National Center for Telehealth and Technology are excited to announce a new application, called PFA Mobile, now available in the iTunes App Store. The app is intended for disaster responders who are trained in Psychological First Aid (PFA).

PFA Mobile includes:

• Summaries of PFA fundamentals
• PFA interventions matched to specific concerns and needs of survivors
• Mentor tips for applying PFA in the field
• A self-assessment tool for readiness to conduct PFA
• A survivor’s needs form for simplified data collection and easy referral

The app is free and will work on any mobile Apple device (iPod touch, iPhone, iPad). Please download and feel free to send any feedback or suggestions for future versions. An Android version may be available in the coming year. Anyone needing technical assistance or additional resources may contact Dr. Melissa Brymer.

A picture is worth a thousand words, and a method called photovoice takes advantage of pictures’ compelling qualities by incorporating photography into research and evaluation. Photovoice is a participatory evaluation method in which program participants are given cameras to capture images that convey their feelings, beliefs and experiences about an issue. The method is used frequently in advocacy projects, allowing the less powerful stakeholders to communicate about issues that impact their lives.

Photovoice seems to be a particularly popular way to engage youth in projects or in evaluation. For examples of photovoice projects with teenagers, check out the two articles listed at the end of this entry. The project described in Necheles et al. used photovoice to engage teenagers in identifying influences over their own health behavior. These teens then developed materials such as posters to advocate for healthier lifestyles among their peers. The article by Strack, Magill and McDonagh presents a project in which teens identified problems in their neighborhoods through photovoice. Both articles provide abundant advice for conducting photovoice projects, including how to engage youth in analyzing photos and ideas for presenting results.

Some photovoice projects carry potential risk for participants. Participants also must be taught how to get and document consent from others who appear in their photos. Consequently, photovoice projects require above-average planning and management skills. For an excellent resource on managing photovoice projects, check out photovoice.org, particularly the organization’s methodology section.

Resources:

Necheles JW et al. The Teen Photovoice Project: A pilot study to promote Health through Advocacy. Prog Community Health Partnersh 2007 Fall; 1(3): 221–229.

Strack RW, Magill C, McDonagh K. Engaging youth through photovoice. Health Promot Pract 2004;5:49–58.