by Terri Ottosen, Consumer Health Coordinator, NN/LM, SE/A

The Pew Internet & American Life Project (PIALP) released another series of interesting reports this summer. Published in June, the report, “Social networking sites and our lives,” examines social networking sites in a survey that explored people’s overall social networks and how use of these technologies is related to trust, tolerance, social support, and community and political engagement.[1] Later this summer, several other reports were released which illustrate the profound impact social media sites have had on the lives of the American public. Among the headlines for these reports are startling statistics, 28% of American adults use mobile and social location-based services, 65% of online adults use social networking sites, half of U.S. adults use social networks such as Facebook, and young women are “power users” of social media sites.[2]

As the Consumer Health Coordinator, I found the survey, “Mind the Gap: Peer-to-peer Healthcare,”³ the most fascinating. The rise of the e-patient in health care has been an interest of mine as the burden of managing one’s health has shifted from health professionals to the consumer. Susannah Fox (PIALP) delivered the results of this survey as part of a lecture series at the National Institutes of Health.  These lectures explored a wide range of issues “at the intersection of research, evidence, and clinical practice” ³ where most health consumers find themselves; unsure they are making the best possible health care decisions. As the introduction to the survey summarizes, “peer-to-peer healthcare acknowledges that patients and caregivers know things – about themselves, about each other, about treatments – and they want to share what they know to help other people.”[3]

As health information professionals, many of us are aware of some of these social sites that allow peer-to-peer health connections. One example I use in the Canny Consumer class is PatientsLikeMe.com. This site has over 115,000 patient users with 500+ conditions. Users can share their experiences by searching for others with a condition, symptom or treatment. As the site touts, you have questions about your disease but you also have answers for others, change your life while helping others change theirs.

This new form of participation in the online world is called the “new Zeitgeist of Participation” by the Pew report. This new zeitgeist of participation is transforming health care, political campaigns, news and the entertainment world. They compare peer-to-peer healthcare with the transformation of the music industry by allowing people to share what they know and as a result of two powerful forces: our ancient instinct to seek and share advice about our health and our relatively new ability to do it at Internet speed and scale.[4]

We all will need health information in our lives for ourselves or our friends and families at some point. Health issues are scary and it’s good to know there are places we can go to share our experiences and get help from others with similar issues.

(more…)

”Do not just focus on what you are trying to do, take some time and listen to your community and what they need..”

Geetha Sridaran
Head of Reference
Drs. Sid E. & Nell K. Williams Library
Life University
http://www.life.edu/library
Marietta, Georgia

What is your position?

I am head of the reference department at Drs. Sid E. & Nell K. Williams Library of Life University in Marietta, GA.  The majority of our patrons are students, faculty and staff.  We also provide service to our alumni and visitors when requested.

Is there something in your own personal story that led you to do the work you do?

When I was growing up in India, I had no idea about the Dewey or LC classification, even though the ideology of librarianship was created by Indian-born Shiyali Ramamrita (SR) Ranganathan known as ‘The Father of Library Science’ in his classic The Five Laws of Library Science. As a child, I organized my father’s collection with my own classification system for easy identification. Little did my father know that I would become a librarian later in life. When I was deciding on my career, it was an easy choice for me. I always enjoyed reading and writing poetry, but as my family and responsibilities grew those interests lost priority.  I certainly passed it on to my children.  All three of my children are avid readers although the subjects vary widely.

What do you love most about your outreach work?

The best part of being a librarian is reaching out to people and quenching their thirst for information. Every time I attempt to do that I learn something new.  During my recent NN/LM/ NIH outreach grant project I had the opportunity to reach out to the senior community.  It was gratifying to disseminate a little part of the vast ocean of online health information to those who really need it most.

What is the biggest challenge in your work?

Getting everybody involved on the same page/pace in order to complete a successful project.

What has been the most fulfilling part of your work in terms of health outreach to your community’s underserved populations?

I am thankful for the many projects that NNLM/ NIH has in place to reach out to underserved populations in several parts of the South Eastern Atlantic region. Without the ‘Outreach Project’ grant, I would have missed the opportunity of meeting some wonderful people. Toward the end of the project our library hosted a ‘Healthy Aging’ reception and invited all the participants. It was a great feeling to see all of them sharing their newfound knowledge and technical tips for online searching. It is fulfilling to know that they will be taking their expertise into their communities and spreading it to others.

What do you see as the biggest health concerns in the communities you serve?

Everybody is too busy to take time to understand their body’s needs.  Sometimes even the most educated people do not listen to their bodies and end up becoming part of the statistics in the endless list of diseases.

How did you first come to know NN/LM SE/A?

Several years ago when I was volunteering at a health science library my mentor hosted a training session by NN/LM SE/A staff.  Since then I attended many such sessions and met/communicated with most of the staff members of NN/LM SE/A. All of them are very knowledgeable and helpful.

In what ways has NN/LM SE/A been of help to you?

NN/LM SE/A has played a big role in shaping my career and I am very thankful for that.  It has expanded our ability as a health sciences library to move out into the community and provide resources to residents. I appreciate the opportunities it has given our institution and me that are still thriving.

Can you share a success story about the impact of health outreach in your community?

I have opportunities to continue to see some of the senior members I got acquainted with through the outreach project. It is a great feeling when they tell me that they share the knowledge with their friends and family, which I shared with them. Some of them regularly check out resources on healthy aging and one member in particular stays in touch with me through email and phone. They have become experts in searching for reliable information, not intimidated by technology, and applying the knowledge to make healthy choices.  Those were the objectives of the project.

What advice would you give others who are interested in doing health outreach work in their communities?

It is hard to get started and earn the confidence of your audience, but once they are comfortable with you it is an ongoing and gratifying service. Do not just focus on what you are trying to do, take some time and listen to your community and what they need.

If you would like to share your story or suggest another person for our “Inspiring People” feature, please email Nancy Patterson:  npatters@hshsl.umaryland.edu

by Terri Ottosen, Consumer Health Coordinator, NN/LM, SE/A

The “nature” vs. “nurture” argument took an interesting turn recently. An article in the journal Science, describes recent research that found that genes, not a healthy lifestyle, determine whether most people make it to age 95 or beyond. Of course, lifestyle matters, but according to Dr. Jill P. Crandall, a professor of clinical medicine at the Albert Einstein College of Medicine and co-author of a new study on longevity, “the genetic component that allows people to survive into extreme old age is probably a very powerful one, even counteracting the effects of unhealthy lifestyle choices.”[1] This article has since been retracted, but in the full notice of retraction, the main scientific findings remain supported by the original data.

The study authors interviewed people living independently at ages 95 through 109, and asked them to recall things such as their weight, height, alcohol consumption, smoking and their physical activity at age 70. They were also asked whether they ate a low-calorie, low-fat or low-salt diet at that age. All the subjects were Ashkenazi Jews, who share a similar genetic heritage. The researchers then compared the responses to those from a group of 3,164 people who took part in a survey in the 1970s.  The participants in the earlier study were at about the same ages as the elderly subjects who appear in the new study.

So, did today’s elderly people act differently back when they were 70, from people in general? Were they healthier, or did they smoke less and exercise more? The researchers found the answer to be, not really. They discovered that centenarians in general did not stick to any specific healthy diet any more than the general population. The same was found for smoking and exercise. For example, only 43% of men 95 and older reported exercising regularly with moderate intensity, compared with 57% of men in the comparison group.

Generally, science knows relatively little when it comes to genetics. Since the Human Genome Project was completed in 2003, we are learning more and more as the data from that project is analyzed. As librarians, you may get questions regarding genetic conditions occasionally, but not routinely. In the future, we will probably see this change as consumers and health professionals seek knowledge and answers. Additionally, there are many social, ethical and legal issues surrounding genetic information. It is important as health information professionals that we know good sources of reliable genetic information to assist those with questions. Some health sciences librarians are adept at searching genomic databases and assist researchers with genetic sequences and more. Some of us may simply recognize that a particular disease or condition is genetic in nature and will refer patrons beyond MedlinePlus, to the National Library of Medicine’s Genetic Home Reference database. [2]

The NN/LM SE/A has a consumer genetics class, “ABCs of DNA: Unraveling the Mystery of Genetics Information for Consumers,” that has been taught several times throughout the Region and at MLA. It will be updated and offered in Seattle at MLA 2012 and will be added to the suite of courses via distance education on Moodle in the future. The Consumer Health Coordinator has a keen interest in genetics information and constantly strives to increase her knowledge of the subject. There are quite a few interesting genetics blogs for those interested in the topic. Tomorrow’s Table: http://scienceblogs.com/tomorrowstable/ is a blog that explores genetically modified food and its future.  The U.S. PharmD.com site has a great list of the top 50 genetics blogs for further reading: http://www.uspharmd.com/blog/2009/top-50-genetics-blogs/. A SEAGuide (our version of a LibGuide) will also be forthcoming on the topic.

For those of you that would like to take a look at the resources and materials from the class, please visit: http://nnlm.gov/training/genetics/index.html

by Nancy Patterson, Community Outreach Coordinator

Marilynn Lance-Robb
Ma Flo’s Beauty Salon & Ma Flo’s Health & Awareness Team
Georgetown, SC
(843) 520-1845

What is your position and what path led you to it?

I’m the Founder/Owner of MaFlo’s Health & Awareness Team/MaFlo’s Beauty Salon. What led me to do what I do? My clientele is fairly large and I would always try my best to provide them with reliable health information.  Then when the opportunity came around to teach participants how to use the computer to find reliable health information using the internet, I took advantage of the opportunity.

Is there something in your own personal story that lead you to do the work you do?

I’ve always wanted to help people. I was afraid of technology and the change that would follow until I took a class in computers and I fell in love with the education that it provided. I took that knowledge and I shared it with others. If I can do anything to help someone else, I’m all for it.

What do you love most about what you do?

I love meeting new people and seeing the smiles on their faces when they’ve learned something new. I love going to other communities and sharing the information that I’ve learned from NN/LM and MedlinePlus.

What is the biggest challenge in what you do?

The biggest challenge that I’ve had was getting the equipment at first but that was years ago when I first got started. I can’t say that I’ve had any major challenges. Sometimes you may feel as if you’re all alone, but then you remember the smiles on the faces of the people you are helping.

What has been the most fulfilling part of your work in terms of health outreach to your community’s underserved population?

The most fulfilling part of my work as far as health outreach is concerned is the excitement that a participant gets when they’ve learned something new. When I introduce them to MedlinePlus.gov they just can’t believe the amount of information that’s available on the topic of their choice. Another part of my work is teaching participants how to use the computer.

Some didn’t even know how to turn on a computer before our class and it makes me happy just to see their reaction when they learned how to not only turn the computer on but how to obtain an email address, send and receive e-mail messages and learn how to use other software such as MS Word, Publisher and Excel. When I see the sense of accomplishment on their faces that lets me know that I’ve done something good to help someone get to the next level. It makes me feel so very good when I check my email and I see a message from one of the participants in the project; it’s a feeling of mission accomplishment.

What do you see as the biggest health concerns in the communities you serve?

The biggest health concerns I see in our community are diabetes, kidney failure, hypertension, obesity and heart disease.

How did you first come to know NN/LM SE/A?

I worked on a project with Barbara Carlson and at the time she was working on a REACH 2010 project with a group from the Medical University of Charleston (MUSC). We worked on that project and in 2006 we participated in The National Health Awards in Bethesda, MD where we came in 1^st place. Winning that award compelled me to do more for my community. I got the website from Barbara Carlson and asked NN/LM SE/A questions about doing the project from a beauty salon. I gave it a try and I was excited about the outcome.

In what ways has NN/LM SE/A been of help to you?

For the past 5 years NN/LM SE/A has been a great help to my project and my community. Without the funding that my project received from NN/LM we would not have reached as many participants as we did. To be honest, I really don’t think that the project would exist. Through NN/LM SE/A funding, classes and site visits, we were able to offer free computer classes, reliable health information, and incentives and we also purchased equipment and software. So, on that note, NN/LM SE/A has been a tremendous help to my project.

Can you share a success story about the impact of health outreach in your community?

When I started the project at the Community Center in my neighborhood it was very successful. There was a gentleman that didn’t know how to turn on a computer. I started doing classes at the Health Complex in the area and he was one of the Participants in the class at first. He was so afraid of the mouse and he thought that it was so hard to maneuver, but he kept coming to the sessions and before the sessions were over he was getting ready to purchase his very own computer. All it took for him was a determined and made up mind. This gentleman is now sending and receiving e-mails, using different software and finding reliable health information using MedlinePlus.gov via the internet. Now because of the technology grants that are available through NN/LM SE/A, we have members of the community wanting to know how they, too, can become Network members.

What advice would you give others who are interested in doing health outreach work in their communities?

First and foremost you must have a heart and love for your project and your community; if those ingredients are not there then this is not for you. I love helping people and working with computer illiterate participants. It’s a must that you have patience and also a passion for what you do.

If you would like to share your story or suggest another person for our “Inspiring People” feature, please email Nancy Patterson:  npatters@hshsl.umaryland.edu

by Terri Ottosen, Consumer Health Coordinator, NN/LM, SE/A Region

Many network members are familiar with the Division of Specialized Information Services (SIS) at the National Library of Medicine, but perhaps many are not or would like a refresher or reminder of the information and resources provided by the Division. Recently at an exhibit for school nurses in D.C., the Consumer Health Coordinator (Terri) and the Public Health Coordinator (Sheila) for the Region, met Karen Matzkin. She coordinates the K-12 program for the SIS and attended the conference to display a poster. She brought some very helpful handouts for nurses and teachers to give out at the booth. These handouts were very popular with the conference attendees and went quickly.

For those not familiar with the SIS, the Division produces information resources on a wide range of topics covering toxicology, environmental health, HIV/AIDS, drug and consumer product information, and disaster/emergency preparedness and response. The Toxicology and Environmental Health Information Program (TEHIP) component covers toxicology, environmental health, and chemistry. The Outreach and Special Populations Branch (OSPB) seeks to improve access to quality and accurate health information by underserved and special populations. The Disaster Information Management Research Center (DIMRC) helps provide online and downloadable information resources relevant to national emergency preparedness, response, and recovery efforts. SIS also coordinates many of the National Library of Medicine’s HIV/AIDS information activities.[1]

SIS has a very helpful page on their website that points to resources for K-12 science and health education. They work with teachers and scientific experts to provide free reliable resources to help introduce, reinforce, and supplement education programs. Categories on this page include: biology, careers, environmental health science, chemistry, forensics and medical technology, general health, genetics, health information tutorials, HIV/AIDS, lesson plans, projects, and Spanish language resources. For those of you with potential funding projects involving the K-12 population, teachers or school nurses, the resources are a good source of training materials and ideas. The K-12 page is located at: http://sis.nlm.nih.gov/outreach/k12.html.

Additionally, there are two relatively new offerings from the National Library of Medicine on environmental health for the K-12 population. The Environmental Health Student Portal (www.kidsenvirohealth.nlm.nih.gov) introduces middle school students to environmental health science within the context of current middle school science curriculum standards. It is the newest edition to the family of NLM resources for students, with links to government and other selected sites.

The Environmental Health Student Portal provides a safe and reliable environment for teachers and students to study the following topics and their impact on health:

• water pollution
• climate change
• chemicals
• (coming soon) air pollution

Middle school teachers from Maryland, Pennsylvania, Maine, and the District of Columbia helped determine the site’s content as well as ways in which it can be incorporated into the classroom.

The Environmental Health Student Portal allows students to conduct research, play games related to environmental health, locate science fair projects, and view videos. Teachers can find relevant content and lesson plans from resources like the U.S. Environmental Protection Agency and the National Institute of Environmental Health Science.

Tox Town, the National Library of Medicine (NLM) interactive guide to commonly encountered toxic substances, has added an “Indoor Air” topic. Most people in the United States spend a significant amount of time indoors. The indoor air we breathe can be more polluted than outdoor air.
Visit the new Indoor Air location pages, in both Spanish and English, to learn about possible indoor air pollutants and how these pollutants can increase the risk of illness.
Indoor Air: http://www.toxtown.nlm.nih.gov/text_version/locations.php?id=136
Aire interior http://www.toxtown.nlm.nih.gov/espanol/locations.php?id=137

by Nancy Patterson, Community Outreach Coordinator, NN/LM, SE/A Region

“NN/LM SEA is a sea of cutting edge information and a resource bank to us – exposure to a world of endless social-health information to educate people of all ages at the grass roots level and at the global level.”
Theresa Alaeze
Executive Director
Associated Health Resource Center, Inc.
(410) 435-8899
Baltimore, MD

Is there something in your own story that led you to do the work you do?

Yes, in my final year as a nursing student, I was assigned to the pediatric unit dealing with premature babies and their mothers. I observed that majority of diseases that killed newborns before they reached one year of age were preventable in nature. Unfortunately, the mothers either have low literacy levels or just don’t have any formal education at all, hence my crusade to get involved in providing basic but sustainable social-health information to the general population focusing on women and children’s health issues. This, I do with passion. I will go distance to accomplish this mission because good health is priceless.

What do you love most about what you do?

Helping people understand that they are big players in health maintenance and enabling them to make informed choices when it comes to making decisions about their health and the health of their loved ones.

What is the biggest challenge in what you do?

Witnessing people changed their own hard-held beliefs and attitudes toward certain health issues and cultural factors. In the western world, it’s hard to convince certain ethnic people who have predispositions (genetic factors) for diabetes that they can reduce their vulnerability by making good eating choices and staying active. In the developing countries, it’s very difficult to convince parents with low literacy levels about the power of prevention of early childhood diseases through immunization/vaccination. They hold to the belief that the child will die or become paralyzed. The trust between the general population and the medical communities is low and very complex.

What has been the most fulfilling part of your work in terms of health outreach to your community’s underserved populations?

Observing behavioral change toward certain concepts like a two-year old being able to properly wash his/her hands before or after certain activities; learning earlier on the immeasurable value of preventative health.

What do you see as the biggest health concerns in the communities you serve?

The emergence of chronic conditions in younger children such as diabetes, obesity, and recurrent acute asthma episodes and other preventable diseases.

In what ways has NN/LM SE/A been of help to you?

Exposure to a world of endless social-health information to educate people of all ages at the grass roots level and at the global level. NN/LM SEA is a sea of cutting edge information and a resource bank to us.

Can you share a success story about the impact of health outreach in your community?

We have a lot of stories to tell but the most recent one was about H1N1 Influenza and proper hand washing at a daycare center in Baltimore. At this daycare center, they had 42 young people who attended our training sessions. Toward the end of the session, two young people volunteered to become peer educators among teenagers and other young ones, this they stated, “We never knew that you can prevent flu by vaccination and proper hand washing. We thought, the shot gives the flu but now we have learned the truth”. Another story is that of the daycare director who said, “We never knew we can get these types of services for free, and how come nobody even informed us?”. This provider referred us to three other daycare centers which made our efforts expand beyond the pre-selected centers. It’s a blessing to reach out to people who may have otherwise not be reached by the traditional methods of health information delivery.

What advice would you give others who are interested in doing health outreach work in their communities?

Community outreach work is key to communicating social-health messages, encouraging and engaging communities to take charge of their health. The joint benefits are immeasurable. The stakeholder should invest money and resources at the community level through Community Based Organizations (CBOs). Early interventions help to promote awareness, increase knowledge and save tax-payers millions of dollars in treating preventable health conditions.

If you would like to share your story or suggest another person for our “Inspiring People” feature, please email Nancy Patterson:  npatters@hshsl.umaryland.edu

Upcoming Webcast

The next UMLS Webcast will be held on July 27, 2011 at 2:00 pm ET. The topic is “MedlinePlus® Connect: Linking Patient Portals and EHRs to Consumer Health Information.” Stephanie Dennis, MedlinePlus Connect project manager, will give an overview of MedlinePlus Connect, explain how to implement it, and explain the NLM® work behind the scenes to support it. For more information, see MedlinePlus Connect.

The Webcast link is https://webmeeting.nih.gov/medlineplusconnect_essentials/. It will be archived and linked from the UMLS Webcasts Web page.

 “A person is more likely to listen to their friend and neighbor than an outreach worker who is a stranger… Consider the idea of using Lay Health Promoters in the community.”

Karin Hoffman
Rural Medical Services, Inc.
Director, Migrant Outreach Program
Parrottsville,TN
http://www.ruralmedicalservices.org/migrant-program  

Rural Medical Services, Inc. (RMS) receives federal funding to provide services to migrant and seasonal farmworkers under the Migrant Health Center Program.  This program allows RMS to deliver comprehensive, high quality, culturally-competent preventive and primary health services to migrant and seasonal farmworkers and their families with a particular focus on the occupational health and safety needs of the population. Principal employment for both migrant and seasonal farm workers must be in agriculture.

Rural Medical Services became a Migrant Health Center in the early 1980’s.  At that time, they began to provide healthcare to farmworkers who migrated to East Tennessee to harvest tomatoes and tobacco.  The typical migration pattern of the workers is from Florida, to Georgia, to Tennessee and then back to Florida.

During the harvest season, which runs from July to September, RMS provides evening health screenings at local farms to make workers aware of our clinics and to let them know that we are available to serve them while they are in Tennessee.   During these visits, we screen for health problems and provide health education pertinent to farmworkers.  Often, local churches and community members volunteer to help at these events.  Participation at field screenings gives everyone an opportunity to appreciate the hard work put forth by farmworkers.

There have been many changes in the Migrant Program over the years, but a major change includes the fact that many farmworkers liked East Tennessee enough to live here permanently.  RMS is fortunate to have a large staff of bilingual providers and support personnel who can provide health services, education and assistance to the Hispanic community in their native tongue year round.

In addition to providing primary care, RMS partners with various institutions, such as East Tennessee State University and Migrant Clinicians Network, to assess and help address the occupational and safety needs of migrant and seasonal farmworkers.

For approximately 10 years, RMS has had a very active “Promotores Program”.  Individuals from the Hispanic community have been trained in providing health information to their peers.  They are trusted neighbors that provide accurate and valuable health information and encourage the use of available resources.

Interview with Karin Hoffman, Director of the Migrant Program:

Why did you want to be the Director of the Migrant Program?

After a 10 year career working with computer network software and hardware, I decided that I wanted to work less with computers and more with people.  I returned to college and received a Bachelor’s of Science in Biology in 1998.  Shortly following graduation, I entered the Peace Corps and served 3 years in Ecuador working  in community development and conservation of natural resources.  I continued to live and work in Ecuador for another two years providing training for Peace Corps, Ecuador.  I also got married and had a baby during that time.

Prior to my stint in Ecuador, I sold all of my possessions.  When we decided it was time to return to the States, I came to Tennessee in order to have the support of my sister during the transition.

In the first two years upon my return to the States, I had a second child and worked various jobs, but was constantly keeping an eye out for a position where I could use the talents I had acquired in Ecuador.

That job presented itself in an ad for a Migrant Outreach Director in a local Newspaper.  A coworker showed me the employment announcement that called for a bilingual person that had experience working with the Hispanic community and could coordinate outreach services for a migrant health center.   I remember her saying, “there isn’t anyone in East Tennessee, but you, who can fill that position.”  I know that’s not true, but I do think Rural Medical Services was a good match for my skill set.  After being selected for the position, I packed up my family and settled in Newport.

That was five years ago, and I still consider this a great job.  My family and I are very content living in Newport.  My position at RMS allows me to use my skills and permits me to provide a necessary service.   I feel very privileged to work with organizations and with people that make healthcare accessible to everyone who resides in East Tennessee.

What do you love most about what you do?

I am a problem solver and enjoy focusing on a specific problem and figuring out a solution.  Often, I encounter Hispanic families that need extra support in accessing health care.  For example, when a mother is told that she needs to take her baby to Children’s Hospital, it seems impossible.  I get her a map, tell her where to park, give her specific instructions and assure her a translator will be available.  I also look for online health information specific to the situation in her language and at a level she can understand. Then, all of a sudden, she understands the situation better and the task seems more manageable.

I try to give families or individuals the information to accomplish what needs to be done, and with encouragement and support, the family or person feels more comfortable, confident and capable.   That’s what I love – giving people the tools to be more self-reliant and confident in getting the care they need.

How did you first come to know NN/LM SE/A?

Our outreach to the Hispanic community has increased tremendously with the help of the National Network of Libraries of Medicine (NNLM).   Three years ago, Rick Wallace, Assistant Director of the Quillen College of Medicine Library in Johnson City,Tennessee, told us about the availability of funding for Outreach from NNLM.   Rick has worked with our clinics for years and is very aware of our outreach to the Hispanic community.  He offered support and technical assistance in applying for the grants.

Our NNLM projects have focused on new and innovative ways to disperse health information, such as theater and video, to relay the message in a way that is culturally appropriate and better understood by our audience.  Theater group members were also trained as lay health promoters, so in addition to offering performances on health related topics, they can provide health education in their daily lives.

Through another NNLM outreach grant, our lay health promoters have been able to access online health information using laptop computers.  The promoters find information in the individual’s native language and that is presented in a manner that is understandable.

What advice would you give others who are interested in doing health outreach work in their communities?

Consider the idea of using Lay Health Promoters in the community.  Rural Medical Services has used this model for over 10 years and it is a very effective approach to reach the population you are trying to serve.  Natural leaders, from within the target audience, are selected and trained in providing health information.  These trusted community members can relay information in a culturally appropriate manner.

A person is more likely to listen to their friend and neighbor than an outreach worker who is a stranger.  Health education can happen naturally and in non-threatening manner in living rooms and around kitchen tables.

If you would like to share your story or suggest another person for our “Inspiring People” feature, please email Nancy Patterson:  npatters@hshsl.umaryland.edu

by Terri Ottosen, Consumer Health Coordinator, NN/LM, SE/A

Two of the latest buzzwords in health care, as well as Washington, are “comparative effectiveness.” The Recovery and Reinvestment Act has allocated $1.1 billion dollars for comparative effectiveness research (CER). A new offering from the National Library of Medicine, PubMed Health, aims to provide access to this research for health professionals and consumers. But what is comparative effectiveness? How is it different from evidence based medicine?

According to the AHRQ (Agency for Healthcare Research and Quality), comparative effectiveness research is designed to inform health-care decisions by providing evidence on the effectiveness, benefits, and harms of different treatment options. The evidence is generated from research studies that compare drugs, medical devices, tests, surgeries, or ways to deliver health care.

There are two ways that this evidence is found:

• Researchers look at all of the available evidence about the benefits and harms of each choice for different groups of people from existing clinical trials, clinical studies, and other research. These are called research reviews, because they are systematic reviews of existing evidence.
• Researchers conduct studies that generate new evidence of effectiveness or comparative effectiveness of a test, treatment, procedure, or health-care service.

Comparative effectiveness research requires the development, expansion, and use of a variety of data sources and methods to conduct timely and relevant research and disseminate the results in a form that is quickly usable by clinicians, patients, policymakers, and health plans and other payers. Seven steps are involved in conducting this research and in ensuring continued development of the research infrastructure to sustain and advance these efforts:

1. Identify new and emerging clinical interventions.
2. Review and synthesize current medical research.
3. Identify gaps between existing medical research and the needs of clinical practice.
4. Promote and generate new scientific evidence and analytic tools.
5. Train and develop clinical researchers.
6. Translate and disseminate research findings to diverse stakeholders.
7. Reach out to stakeholders via a citizen’s forum.[1]

A Federal Coordinating Council for Comparative Effectiveness Research was appointed by the U.S. Department of Health and Human Services in 2009 to help coordinate research and guide investments in comparative effectiveness research funded by the Recovery Act. Comparative effectiveness research provides information on the relative strengths and weakness of various medical interventions. Such research will give clinicians and patients valid information to make decisions that will improve the performance of the U.S. health care system.

Some detractors have asked how this is new. Health care professionals have already been practicing evidence based medicine. Another major issue is whether CER may represent the first step towards an intrusive role for government in the practice of medicine.

How is comparative effectiveness research different than evidence based practice? The Federal Coordinating Council defines comparative effectiveness research as, “the conduct and synthesis of research comparing the benefits and harms of different interventions and strategies to prevent, diagnose, treat and monitor health conditions in ‘real world’ settings. The purpose of this research is to improve health outcomes by developing and disseminating evidence-based information to patients, clinicians, and other decision-makers, responding to their expressed needs, about which interventions are most effective for which patients under specific circumstances.” They view evidence based research as the foundation for comparative effectiveness research. [2]

One relatively new offering from the National Library of Medicine, PubMed Health, provides access to up-to-date information on diseases, conditions, drugs, treatment options, and healthy living, with a special focus on comparative effectiveness research from institutions around the world. PubMed Health includes:

• consumer guides summarizing comparative effectiveness research
• fact sheets on diseases and conditions
• information on drugs and supplements
• encyclopedic overviews of health topics
• links to external Web sites

PubMed Health has a special focus on comparative effectiveness research, in particular that research which evaluates the available evidence of the benefits and harms of different treatment options for different groups of people. In Comparative Effectiveness Research, experts often synthesize the evidence from dozens, or even hundreds, of individual studies.

The PubMed Health consumer guides on comparative effectiveness research are intended to:

• outline the known benefits and harms of different treatment options or prevention strategies
• explain what is known—and what is not known—about new or emerging health-care tests or treatments
• provide useful background on health conditions

PubMed Health page: http://www.ncbi.nlm.nih.gov/pubmedhealth/

Program to focus on community health and resiliency in Gulf region

An NIH-funded network of researchers will evaluate potential harmful effects of the Deepwater Horizon disaster on reproduction and birth outcomes, the cardiorespiratory system, and behavior and mental health. The network of community and university partnerships, under the leadership of NIH’s National Institute of Environmental Health Sciences (NIEHS), will conduct research to evaluate the level of potentially harmful contaminants in air, water, and seafood, and assess their relationship to health outcomes.

The five-year, $25.2 million program will support population-based and laboratory research at Louisiana State University Health Sciences Center New Orleans; Tulane University, New Orleans; the University of Florida, Gainesville; and The University of Texas Medical Branch at Galveston. In contrast to NIEHS’ Gulf Long-term Follow-up Study, known as the GuLF Study, which is focused on the oil spill cleanup workers and volunteers, this new research will concentrate on the range of acute and long-term health effects to the general public.

As an integrated network, these four institutions will collaborate on approaches and share results to better understand the interplay and effects of multiple stressors on human health. To ensure research activities are responsive to the needs of local communities in the Gulf Coast region, the universities will partner with more than a dozen community organizations to incorporate local concerns and more effectively communicate research findings.

“From individuals, to families, to communities, this initiative shows a commitment to better understand the long-term health effects of oil spills,” said Linda Birnbaum, Ph.D., director of NIEHS and the National Toxicology Program. “Our number one goal is to provide strong science that will help people now and during future disasters.”

“Throughout the Gulf region, scientists and community groups will work hand in hand to address the needs of those most impacted,” said Gwen Collman, Ph.D., director of the NIEHS Division of Extramural Research and Training, which will closely monitor the progress of the research components. “A focus will be on the physical and psychological health of vulnerable populations, especially pregnant women, children, fishermen, immigrants, and minorities.”

In addition to sharing data and research results, each of the four institutions will implement a community resilience project, which seeks to better understand how local populations respond to and recover from disasters. Through their partnerships with community-based organizations, researchers will assess how culture, social networks, and other determinants may enhance pre-event preparedness and post-event recovery.

“This region has seen its share of disasters, and many communities have shown remarkable resilience,” said Claudia Thompson, Ph.D., chief of the Susceptibility and Population Health Branch at NIEHS. “One goal of the research projects is to understand what keeps these communities together, so that other communities can benefit.”

The four recipients of the NIH funding are:

Additional information on specific research topics and community partnerships can be found on the NIEHS website at www.niehs.nih.gov.

In addition to NIEHS, many other NIH components are contributing support to the program, including the National Cancer Institute; National Center for Research Resources; National Heart, Lung, and Blood Institute; National Institute of Mental Health; National Institute on Minority Health and Health Disparities; National Institute of Nursing Research; and the Office of Behavioral and Social Sciences Research. Of the $25.2 million in total funding, $3.2 million was provided by BP to NIH specifically for research on the health of Gulf area communities following the oil spill, although BP is not involved in the program or any of its research.

Since the Deepwater Horizon explosion, NIEHS has maintained a continuous and ongoing presence in the Gulf oil spill recovery effort. NIEHS spearheaded efforts to train more than 140,000 cleanup workers through its Worker Education and Training Program. Also, NIEHS is currently leading the GuLF Study, the largest health study of its kind ever conducted among cleanup workers and volunteers. The GuLF Study has been developed to last up to 10 years and evaluate the health of 55,000 people.

The NIEHS supports research to understand the effects of the environment on human health and is part of NIH. For more information on environmental health topics, visit www.niehs.nih.gov. Subscribe to one or more of the NIEHS news lists to stay current on NIEHS news, press releases, grant opportunities, training, events, and publications.