IN THIS ISSUE:
- Patient care providers and staff help raise the Anti-Flu-O-Meter
- Enhancements to NIH database provide more ways for intramural collaboration
- Exploratory study broadens understanding of international family's needs at the Clinical Center
- Registration open for enhanced introduction to clinical research course for health professionals
- African heads of state and government participating in the 2014 US-Africa Leaders Summit visit NIH hospital
- Students sharpen career, research skills at the Clinical Center
- Upcoming Events
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National Institutes of Health
Building 10, 10 Center Drive
Bethesda, MD 20892-1504
Beginning Sept. 15 the NIH Office of Research Services and the Clinical Center will offer free flu shots to anyone with an NIH identification badge. Vaccinations will be available through Oct. 25.
This year, the flu immunization clinic will open at 6 a.m. during the first week of operation: Sept. 15-19. The on-site clinic will be located on the east side of the seventh floor of the Clinical Research Center.
Over 3,700 staff members who have patient contact, employees and contractors are required to get the flu vaccine each year. The shot is available but not required of all other NIH staff. Staff age 65 and older can receive a higher dose vaccine.
The Occupational Medical Service will provide a certificate of immunization by email. Questions? Call 301-496-2209. View additional information at www.foiltheflu.nih.gov or scan the barcode with a smart device for more details.
A powerful tool to advance research has been improved to help better connect investigators with study participant data.
The Biomedical Translational Research Information System (BTRIS), pronounced BEE-triss, is a catalogue of clinical research data dating back to 1976. The system can only be seen and used by intramural scientists or internal NIH staff who conduct research on the Bethesda campus or an NIH facility. BTRIS provides access to information contributed by over 500,000 people who've participated in a study. Those contributions make up five billion distinct data points that can be assessed to advance current research.
Over the past several months, the Clinical Center Laboratory for Informatics Development, which maintains BTRIS, enhanced its usability and worked to ensure that current data use is communicated more effectively to the original investigators who collected the information. The improvements also allow the system's administrators to monitor how employees approach the data in order to provide continuous enhancements to the system.
The goals of the BTRIS upgrade were to advance research by letting scientists explore data in an uninhibited way and providing researchers with the flexibility to analyze different data sets.
BTRIS is unique to NIH. It allows the information collected from almost 40 years of studies to be used to its utmost potential. The "self-service" tool provides users with access to data within their own active protocols and to obtain limited data sets across both current and past protocols. Study participant data in BTRIS can be provided either in an identified format (with personally identifiable information) or a limited data set (with no personally identifiable information). The limited data set application has four types of data: demographic, laboratory, medication and diagnosis. The identified-data application has many more data types.
The primary functions of the Biomedical Translational Research Information System.
All of the data are related to research protocols so when people access the statistics, the original researchers are made aware that other NIH investigators are reviewing the information, fostering a collaborative environment where current researchers connect with past investigators in assessing and using data to better protect human health.
"We hope this will spur collaboration between the user and previous investigators," said Dr. James J. Cimino, chief of the Laboratory for Informatics Development. He also emphasized, "We owe it to our [patients], who have literally given their blood, sweat and tears, to make the maximum use of this data."
While this round of updates to the six-year-old BTRIS is complete, there are long-term plans to add access to full text documents in de-identified form to expand the information available to researchers. Eventually, NIH intramural investigators would be able to access items like pathology reports, discharge summaries and x-ray details which would allow them to better understand the significant factors in a study participant's treatment and the outcomes of the studies.
Parents of pediatric patients share experience during treatment
Social worker Rachel Margolis says her involvement in a recent study has greatly improved her ability to support international families of pediatric patients at the Clinical Center.
The study, titled "An Exploratory Study of the Characteristics of and Challenges for International Families Seeking Medical Care in the United States," allowed Margolis the opportunity to conduct qualitative interviews with 22 caregivers of pediatric patients. The National Institute of Mental Health (NIMH) study included patients from several different institutes. It was managed by Principal Investigator Dr. Maryland Pao, NIMH, and Lead Associate Investigator Dr. Lori Wiener, National Cancer Institute. Additional NIH staff also helped conduct interviews.
Researchers hope to better understand the barriers and challenges that international families face when seeking treatment at NIH and to develop greater support for them. With families from abroad, the stresses and challenges of seeking treatment in the U.S. are complex. There can be language barriers, cultural barriers, financial issues and stress from being separated from community supports and other children who remain back at home. While at NIH, families have to adapt to a research medical environment and to living in a foreign country.
The families who participated in the study, many of whom spoke Spanish or English, came from places around the globe including the Dominican Republic, Honduras, Greece, the Middle East, Great Britain and Jamaica.
"We interviewed caregivers of patients, who had been here for at least three months, about their experiences," Margolis said. "These were semi-structured interviews with twelve open-ended questions and the leeway to ask follow up questions."
The participants were asked the following questions about their time at the hospital: What was helpful? What were problem areas? How did you find out about NIH? Before you got here, how much information did you have on your child's medical condition? What were your experiences upon arrival? How have you grown from this experience?
Of the caregivers Margolis interviewed, not one regretted the decision to come to NIH for treatment. The caregivers she talked with said they experienced personal growth. Having to adapt to the situation and then being successful at it made them feel competent and good about themselves.
Just as families reported benefiting from the experience, so did Margolis.
"The more I did these interviews, the more it changed the way I worked with the families. It made me more aware of what they need," she said. "I found that it was critical for the research teams to alert me ahead of time that an international family is coming, because it's very important to communicate with them before they arrive. It allows me to assess their needs earlier and help prepare them for what to expect. Once they get here, it allows them to feel more comfortable that they already know someone."
Upon arrival, Margolis quickly meets with the families to orient them to the building and show them the non-medical essential areas such as the cafeteria, interpreter program, patient library, chapel, fitness room and other support services.
"I typically try to do this orientation with just the caregiver, without the child, as it gives them a respite and helps build that relationship between me as the social worker and them," Margolis said. "This also allows the family member to talk about their fears because coming here can be very intense and overwhelming. If you help them through it, there can be positive elements to the experience of being here."
The study found that caregivers were impressed with the staff's commitment and by support from facilities like the Children's Inn. Read more about the study. View a recent journal article on the study.
The Social Work Department
The Clinical Center Social Work Department has 25 social workers, eight of whom are bilingual. They screen both inpatients and sometimes outpatients to determine what psychosocial needs they have. The psychosocial assessment helps determine how patients and families are coping emotionally and psychologically with an illness, the social impact on the family and the family's ability to utilize community resources as needed.
In addition to interdisciplinary involvement, the social work staff provide counseling, advocate for patient needs, help facilitate communication between the patient and the medical team and connect people to resources within the Clinical Center and in their local communities.
Scientists, physicians, medical students and other health professionals can now register for a free NIH training course to expand their knowledge in clinical research. This year's Introduction to the Principles and Practice of Clinical Research course has an enhanced curriculum and additional lectures that provide more comprehensive content on clinical research infrastructure.
Registration is open through Oct. 6. The course will be held Monday and Tuesday nights, 5:00 p.m. – 6:30 p.m. Oct. 14, 2014 through March 9, 2015. Participants can attend the class in person at the Clinical Center or view it online at any time.
Last year, nearly 2,100 participants registered for the course including 480 at NIH, 677 in the U.S. and 902 internationally.
View the schedule of NIH, HHS and other teachers who will present throughout the six-month course and register online. Contact course coordinator, Daniel McAnally at 301-496-9425, email@example.com.
African heads of state and government participating in the 2014 US-Africa Leaders Summit visit NIH hospital
The President of Tanzania, Jakaya Mrisho Kikwete, the President of the Republic of the Congo, Dennis Sassou Nguesso, the President of Mali, Ibrahim Boubacar Keïta, the Zambian Vice President, Guy Scott, and other ambassadors and government officials from Africa visited the NIH Clinical Center Aug. 2 and Aug. 7. These leaders, along with over 45 additional African heads of state and government, were in the Nation's Capital for the U.S.-Africa Leaders Summit.
During their visit, Dr. Francis S. Collins, NIH director, Dr. John I. Gallin, Clinical Center director, and other NIH leaders showcased the NIH-supported research in African countries and discussed how these investments are making a difference in the lives of Africans and Americans. NIH directors presented research advancement and specific opportunities for future research investment. The leaders were invited to NIH by the Fogarty International Center.
Clinical Center Grand Rounds Lecture
Contemporary Clinical Medicine: Great Teachers Lecture
Medical Mistakes: Why Do They Happen and How Can We Prevent Them?
Sept. 10, 2014; Noon - 1:00 p.m.
Presented by Frederick S. Southwick, MD, University of Florida College of Medicine.
Clinical Center Grand Rounds Lecture
Screening for Suicide Risk in Medical Settings: Time to Ask Questions
New Insights into the Neurobiology of Suicide and Rapid-Acting Treatment
Sept. 17, 2014; Noon - 1:00 p.m.
Presented by Lisa Horowitz, PhD, NIMH and Carlos A. Zarate, Jr., MD, NIMH.
The National Symphony Orchestra
Sept. 17, 2014; 2:00 p.m. – 3:00 p.m.
Hatfield Building, North Atrium
A special concert performance, co-presented by the Foundation for Advanced Education in the Sciences and the NIH Clinical Center.
NIH Director's Wednesday Afternoon Lecture Series
The Neurogenetics of Innate Behaviors
Sept. 17, 2014; 3:00 p.m. - 4:00 p.m.
Presented by Leslie B. Vosshall, PhD, The Rockefeller University.
Thirty-Third Annual Symposium: Immunology & Blood Transfusion
Sept. 18, 2014; 8:25 a.m. – 3:30 p.m.
Learn about recent developments, current practices, controversies and laboratory management issues relative to transfusion medicine. Free and open to the public.