IN THIS ISSUE:
- 2016 employee survey results show high workplace satisfaction
- Atrium café renovation set for November, new marketplace serving Starbucks to open in 2017
- NIH study shows that patients with PIEZO2 mutation have problems with proprioception, or body awareness
- Green Road project to research healing properties of Mother Nature
- Hospital updates from Health Information Technology Day
- Former HHS Secretary Sullivan discusses diversity in the health professions
- Energetic 3-year-old receives gene therapy for inherited disorder of the immune system
- NCI-NHLBI investigator earns Distinguished Clinical Teaching Award
- New Animal Research Community Tribute now located on the south lawn of the Clinical Center
- Transfusion Medicine Department co-hosts symposiums on the storage, safety and standard practices of blood
- Volunteers needed for trials looking at brain imaging, lung diseases and alcohol consumption
- This Thanksgiving, celebrate Family Health History Day
- Calendar of Events
ABOUT CC NEWS:
Published monthly by the Office of Communications and Media Relations. News, article ideas, calendar events, letters, and photographs are welcome. Submissions may be edited.
National Institutes of Health
Building 10, 10 Center Drive
Bethesda, MD 20892-1504
The contribution your work has on the overall mission of the organization
The work itself (it is rewarding)
While at work I'm completely focused on my work projects
According to the 2016 NIH Clinical Center Employee Survey (NIH staff only), administered to over 1,000 federal employees, 77 percent of the center's staff reported being satisfied with Clinical Center. The Clinical Center's response ranked higher than the 69 percent national average satisfaction rate amongst U.S. hospital employees and the 68 percent satisfaction rate amongst other U.S. employees surveyed.
The survey, administered in February 2016, also found that 74 percent of respondents are satisfied with their current position. Employees reported that they are engaged, confident they can accomplish their work goals and feel completely engaged at work.
The Clinical Center Office of Workforce Management and Development, in partnership with the Society of Human Resource Management, developed the survey to focus on actionable results and allow for targeted analysis by department, supervisory role and position type. This is one of the first surveys to be conducted of Clinical Center employees where results were compared to other U.S. hospitals and employees.
Areas for improvement include career advancement opportunities, funded training opportunities, tuition reimbursement, and career development opportunities for learning and professional growth.
In addition, 40 percent of employees said that they were skeptical that any action will be taken in response to the results of this survey. In an email to employees in September, Dr. John I. Gallin, director of the Clinical Center, said "I am committed to dispelling this belief and ensuring that the NIH Clinical Center responds to the employee survey results. I will also share these results with the new Chief Executive Officer to assist in developing strategic and operational planning."
The Office of Workforce Management and Development has provided each department head with a copy of their individual survey results so they can address individual strengths and weaknesses effectively. In addition, the office is developing programs to respond to the identified areas for improvement, which will be announced in the upcoming months.
Update: The renovation will begin Dec 19, not the end of November as previously reported.
Atrium café renovation set for November, new marketplace serving Starbucks to open in 2017
A temporary café will provide food and beverages until the new marketplace opens in the New Year.
At the end of November, Au Bon Pain in the Clinical Center atrium will close and renovations will begin on a café featuring a Starbucks "We Proudly Brew" program. The space, scheduled to re-open in February 2017, will include a full line of Starbucks beverages, similar to the coffee bar in Building 35. The marketplace is part of a new contract with Eurest, which manages most on-campus cafeterias.
The marketplace is part of a 2015-2020 contract with Eurest, which manages most on-campus cafeterias. It will sell sushi, sandwiches, wraps, salad, soup, baked goods and beverages. There will be multiple cash registers and order lines, self-service kiosks and a more efficient layout to help customers order and pick up items faster.
During the renovation, temporary service will be provided in front of the current Au Bon Pain entrance. The seating area in the center of atrium will be shifted to make room. The temporary service will include hot coffee and tea; bottled beverages; assorted pastries and muffins; yogurt, hard-boiled eggs, and fruit cups; sandwiches, salads, and wraps; sushi trays; and sweet and savory snacks. No espresso drinks or other specialty beverages (e.g. smoothies) will be available.
NIH study shows that patients with PIEZO2 mutation have problems with proprioception, or body awareness
Patient Damiana attempts to touch a target with her finger while blindfolded as a part of a study in the NIH Clinical Center.
Experts working in the NIH Clinical Center have found that there may be a 'sixth sense' intertwined with hearing, sight, taste, smell and touch that the human body greatly depends on for body awareness throughout daily life. In late September, the National Institutes of Neurological Disorders and Stroke (NINDS) and the National Center for Complementary and Integrative Health published a paper in the New England Journal of Medicine [disclaimer] on their finding that a gene called PIEZO2 controls specific aspects of human touch and proprioception – a "sixth sense" describing the ability to sense the body's place in space.
Imagine being blindfolded and asked to walk forward, or to touch an object in front of you. For most people, while it may be uncomfortable, they'd likely be able to do it with little trouble. But the two patients with mutations in the PIEZO2 gene had significant movement and balance problems and a loss of some forms of touch. When blindfolded, the patients had extreme difficulty walking which caused them to stagger and stumble from side to side. Without being able to look at where they were going or to see the object they were supposed to touch in front of them, they could not guess what direction their body was moving. But, despite their movement and touch difficulties, they both appear to cope with these challenges by relying heavily on vision and other senses.
One patient, 10-year-old Damiana, flew from California to the CC last year to participate in the trial. In a recent NPR interview [disclaimer], her mother, Diana Sawyer explained that her rare genetic mutation had always baffled doctors and that "She was very late at doing everything," especially walking. While Damiana is extremely bright intellectually, she has physical difficulties. She can only take a few steps on her own due to abnormalities in her feet and hips and curvature in her spine.
Dr. Carsten G. Bönnemann, senior investigator at NINDS and a co-leader of the study, believes that these findings, and future studies, may lead to more clues to a variety of other neurological disorders.
Dr. Danetta Sloan and Dr. Ann Berger, with the NIH Clinical Center Pain and Palliative Care Consultation; Dr. Marni Silverman, Senior Scientist, Preetha Abraham, Director for Research, and Dr. Patricia Deuster, Professor and Director, with the Consortium for Health and Military Performance, Department of Defense Center of Excellence, Department of Military and Emergency Medicine, Uniformed Services University of Health Sciences; and Dr. Esther Sternberg, Research Director at Arizona Center for Integrative Medicine at the University of Arizona.
About a mile from the NIH Clinical Center, on the campus of Naval Support Activity Bethesda, a new research initiative was launched Sept. 26 to scientifically measure the healing effects of exposure to nature. Among those to celebrate the Institute for Integrative Health's opening of the Green Road project [disclaimer] was Dr. Ann Berger, chief of the Pain and Palliative Care Service at the NIH Clinical Center.
Berger, and many others, have worked and supported the creation of the Green Road (1.39 MB), which is a natural healing environment for injured service members receiving medical care at Walter Reed National Military Medical Center. The Green Road is also open to service members' families. The two-acre garden includes a streamside wheelchair and walking path and commemorative and communal pavilions. The Institute for Integrative Health, a non-profit organization that aims to create a wellness and medical model for society, led the project.
As with any research trial, one of the most important components to its creation was determining the metrics to use to evaluate results. Berger was instrumental in developing the questions participating veterans will answer as part of the study to quantify and evaluate the psychological, social and spiritual aspect of spending time in nature.
Beginning in 2017, the study will request veterans' responses to the questionnaire both before and after they visit the Green Road. According to the Institute for Integrative Health, studies will also look at biomarkers of stress, use natural language processing to analyze participants' journals and stories and examine changes in gene expression. The study will compare how veterans respond to traveling by foot or wheelchair on two different routes across the naval base. One is a high-traffic urban route along Rockville Pike and the other is on the Green Road.
Subjective evidence suggest that immersion into nature can be healing, but there is very little scientific proof or research into this effect. The Institute for Integrative Health along with scientists from several other institutions will conduct the initial research over a two-year period of time.
"The Green Road is a place to heal the body, strengthen the mind and reinvigorate the spirit," said Sen. Barbara A. Mikulski at the dedication ceremony. "By connecting with nature, injured service members can reconnect to themselves, their families and the country they fought for."
Specifically, the project will research how spending time in nature contributes to the healing of service members with Post Traumatic Stress Disorder, traumatic brain injury and other traumatic injuries.
The physical aspects of healing can be quantified through measurements of blood pressure, heart rate and temperature as well as sweat samples. It is much harder to measure intangibles like psychological, social and spiritual healing, said Berger.
"Our work has been to develop a tool that measures this type of healing," she said.
Prior to the launch of the Green Road, Berger and researchers from other institutions interviewed hundreds of patients who experienced life-transforming events. From those interviews, they developed a list of about 100 questions to evaluate a patient's psychological, social and spiritual health.
"We then completed additional interviews with patients to gauge the understanding and interpretation of the questions," Berger said. "We had to ensure that these were the correct metrics to use for this critically important study taking place at the Green Road."
The result is a questionnaire of 48 statements which veterans will review and respond to with a rating from 1, for strongly disagree, to 5, for strongly agree.
Samples of the statements include: I feel isolated; I gain awareness from self-reflection; I have a greater appreciation for my life; My religious beliefs give me hope; Connection with my family has become my highest priority.
In addition to Berger, the project has attracted researchers from the University of Arizona at Tucson's Center for Integrative Medicine and its College of Medicine; the Benson-Henry Institute of the Massachusetts General Hospital and the Uniformed Services University of the Health Sciences' Consortium for Health and Military Performance.
The Green Road Project was one of six $1 million grants from the TKF Foundation's National Open Sacred Places Award.
The research that come from this project could have far reaching implications for planning and funding green spaces on other military bases, as well as in cities and other health institutions, said retired US Navy neurologist Dr. Frederick Foote, a scholar at the Institute for Integrative Health who conceived the Green Road project and managed its development.
"Working with the other health providers and also meeting with the architects and focus groups and veterans who contributed to the project has been an amazing experience," said Berger. "This research is so important because it's what patients care about. We can't cure all diseases, but what we can do is heal the person – make them feel whole – that is what psychological, social and spiritual healing is about."
Elaine Ayres (center), deputy chief in the laboratory of informatics development, Frank Mickey (left), from the Department of Clinical Research Informatics, and Heather Bridge, from the Office of Human Subjects Research Protections, discuss e-consenting and test the tablet consent form.
On Sept. 29, in honor of National Health Information Technology Week, the Clinical Center held Health IT Day to highlight upcoming changes and provide training opportunities on the medical record system, secure health messaging, patient and clinician portals, and more. Key takeaways from some the sessions include:
Enterprise scheduling system goes live in October to better communicate and coordinate patient care
Denise Ford, chief of the Department of Patient Relations and Recruitment Services, shared information on the CC's new enterprise scheduling system that went live Oct. 3. The new system provides real time, accurate patient appointment information in CRIS to over 4,000 users. The system replaces scheduling.com, a third-party scheduling system which has been used in the CC since 2005.
Over 210,000 patient appointments are scheduled in the CC annually. In 2015, the new system was fully implemented in the Dental Clinic, Rehab Medicine Department and Radiology and Imagining Sciences. With the knowledge gained from the rollout in those three areas, the CC implemented Phase 1 of the enterprise scheduling system in October throughout the remaining 29 clinics, day hospitals and procedure/testing areas. Scheduling.com has been officially "retired" and all areas previously using Scheduling.com are now up and running on the new enterprise scheduling system in CRIS. Phase 2 of the implementation, which will link medical orders to appointments and standardize the appointment request process, will be completed in early 2017.
Department of Laboratory Medicine replaces CareFusion with new SoftID software to improve efficiency, safety
Chung-Hee Row, with the Department of Laboratory Medicine, presented a session on the replacement of CareFusion specimen collection system with SoftID. SoftID is an electronic positive patient tracking solution which provides phlebotomists and nurses with an efficient, mobile and dependable means of verifying patient identification for blood collection. The new system, which began in November, will "improve workflow efficiency and patient safety," according to Row.
Among many updated features, the new system will now provide staff with a barcode label for specimens that informs them, with greater specificity than ever before, which test tube is required for a test. For example, for a glucose blood sugar level test staff need a grey test tube topper, for a complete blood count test staff need a lavender tube topper, and if the bleeding time of a patient is being tested, then staff need a blue tube topper. With so many classifications of color and size for tubes, the new labels placed on them now have more text space to better identify the actions needed which allow staff to complete faster and safer testing.
Department of Clinical Research Informatics and Health Information Management Department pilot e-consenting
The Department of Clinical Research Informatics and Health Information Management Departments (HIMD) have an e-consenting pilot underway in Radiation Oncology. As part of the pilot, staff are using mobile devices/tablets to consent patients with an electronic 'fillable' document that is saved and uploaded into CRIS (the medical record system).
"The ultimate goal [is to] expand it throughout the hospital," said Tricia Coffey, chief of the HIMD, who presented during the days' events.
Former HHS Secretary Sullivan discusses diversity in the health professions
The Honorable Dr. Louis W. Sullivan, U.S. Secretary of Health and Human Services from 1989–1993, spoke at the National Library of Medicine's History of Medicine Lecture in the Clinical Center Oct. 4. In his presentation, based on his recently-published memoir, "Breaking Ground: My Life in Medicine," Sullivan shared with the audience a variety of personal and professional experiences impacting his life. Sullivan, who knew by the age of five that he wanted to be a doctor, broke racial barriers in becoming the first African American resident at New York Hospital-Cornell Medical Center in 1958. He later went on to found the Morehouse School of Medicine.
With his collection of stuffed animal dogs lined up on his bed, and his favorite fake bugs tucked by his side, 3-year-old pediatric patient Everett Schmitt received gene therapy for X-linked severe combined immunodeficiency (XSCID) Sept. 15 in the NIH Clinical Center.
Schmitt is enrolled in a clinical trial with the National Institute of Allergy and Infectious Diseases (NIAID) for XSCID, referred to by some people as 'Bubble Boy Disease." It is caused by an abnormality in a gene that affects the growth and development of immune cells such as white blood cells. Schmitt, and others with XSCID, have difficulty fighting infections.
"He's the youngest so far in this trial," Schmitt's mother Anne Klein said. "He's handled everything really well and continues to show his incredible strength and pleasant nature."
"He seems like a little old soul with a good sense of humor," she added.
Just before the gene therapy infusion, Schmitt was calmly buzzing his fake bug around his room and onto the shoulder of Dr. Harry Malech, chief of the Laboratory of Host Defenses and Genetic Immunotherapy Section in NIAID. His critter then would lunge from his hands into the arms of his nurses, who each have their very own matching bug to keep in their pockets. To add to the smiles in the room, his parents put on a funny pair of clown glasses and snuck up on Malech.
Everett sneaks a smile on Day 0, the day of the transplant.
"My immediate family has always had silly pranks in our lives. So we try to pass that on to our kids starting early to develop a sense of humor," Klein said.
His care team celebrated the gene therapy infusion by calling it his 'birthday' because he's getting new and improved cells and truly a second chance in life. The team sang Happy Birthday and brought cake and presents to his bedside. In addition to his real birthday, Schmitt has had one other 'transplant birthday'. At just 7-weeks-old, he received a stem cell transplant from his mother who was a half-match donor but the donor cells began causing rare complications a little more than a year ago.
The hope with lentiviral gene transfer treatment, which he received, is to use good genes to replace defective genes. A lentivirus is a virus that has been modified to carry corrected genes into the blood through corrected stem cells. By collecting an individual's stem cells and modifying them with a lentivirus, the gene-corrected cells can be returned into the blood to help produce normal healthy immune cells. Staff members from the NIH Clinical Center Cell Processing Section in the Department of Transfusion Medicine, who worked on preparing Schmitt's new cells, came down to his room and waved as he was undergoing the infusion.
For now, "we just wait for a while to see how things go," Klein said. But for Schmitt, he just continues to have fun doing typical 3-year-old boy activities like making a secret hideout in his room where he trades 'birthday and Nick Jr. Paw Patrol secrets" with his stuffed animals.
The 2016 NIH Distinguished Clinical Teaching Award was presented to Dr. Sawa Ito Sept. 21.
Ito was recognized for her commitment to training future clinical investigators at the NIH and her contributions to medical education.
She is the associate director of the jointly-sponsored National Cancer Institute and National Heart, Lung, and Blood Institute Hematology Oncology Fellowship Program.
Ito has authored over 25 peer-reviewed publications and is the principal investigator or co-investigator on six NIH clinical trials.
Each year, the award is decided by a vote of the clinical fellows and presented to an individual who exemplifies the ideals of a mentor, teacher, clinician and researcher.
Following the presentation of the award, a CC Grand Rounds Contemporary Clinical Medicine: Great Teachers Lecture was given by Dr. H. Clifford Lane, clinical director of the National Institute of Allergy and Infectious Diseases. His lecture, titled 35 Years of HIV/ AIDS: A View from the Ground Level, can be viewed online.
From left to right, Dr. Francis Collins, NIH director, Dr. Michael Gottesman, deputy director for Intramural Research, Capt. Shelley Hoogstraten-Miller, former Animal Program director with the National Human Genome Research Institute, Dr. Rachel Caspi, chief of Immunoregulation Section with the National Eye Institute and Clark.
On Sept. 16, the NIH held a dedication ceremony for a new Animal Research Community Tribute located on the south lawn of the NIH Clinical Center.
The plaque, presented by the Animal Research Advisory Committee at NIH reads, "With recognition and gratitude to the research animals and the NIH Animal Care and Use Community that have contributed to our exceptional biomedical research advances."
Rear Adm. Terri Clark (pictured far right), director of the Office of Animal Care and Use with the NIH Office of Intramural Research, said that the more than 100 attendees of the plaques unveiling were "quite happy that the tribute was provided. Central themes that emerged from conversations [with attendees] afterwards included the desire to see an annual remembrance, while others commented they wanted to leave mementos at the boulder to express their emotions and commitment to the research animals."
Transfusion Medicine Department co-hosts symposiums on the storage, safety and standard practices of blood
Red Cell Genotyping Symposium
The NIH Clinical Center Department of Transfusion Medicine (DTM), along with the BloodCenter of Wisconsin, co-hosted the 6th annual Red Cell Genotyping Symposium Sept. 21 on the campus of NIH.
The symposium, titled "Clinical Steps", reviewed the laboratory aspects and clinical benefits of red cell genotyping in patients and blood donors, contributing to patient safety. Dr. Bill Flegel, chief of the Laboratory Services Section of DTM, served as one of the moderators.
The impact of immunization by red blood cells on mortality of patients with sickle cell disease was presented along with clinical vignettes incorporating molecular studies to prevent morbidity and mortality.
Other topics included the role of professional societies in setting red cell genotyping policies, cost effectiveness of red cell genotyping, the Australian perspective on red cell genotyping and the impact of whole genome sequencing and MALDI-TOF mass spectroscopy based blood group and gene copy number testing.
The symposium concluded with a presentation by Dr. Michael P. Busch, Director of Blood Systems Research Institute, on a study by the NIH National Heart, Lung, and Blood Institute (NHLBI) titled REDS-III red blood cell -omics.
According to the NHLBI website, "the study explores blood donor genetic factors that may affect red blood cells and lead to increased or decreased susceptibility to certain stressors, ultimately impacting blood storage ability."
Immunohematology & Blood Bank Symposium
The NIH Clinical Center Department of Transfusion Medicine and the American Red Cross co-hosted the 35th Annual Immunohematology & Blood Bank Symposium Sept. 22.
Over 200 people gathered in Masur Auditorium to learn about recent developments, current practices, controversies and laboratory management issues relative to transfusion medicine.
At the symposium, Dr. Edward L. Snyder, a Professor of Laboratory Medicine at Yale-New Haven Hospital, received the Richard J. Davey Lectureship Award from symposium directors.
The award is given to an individual whose contributions have significantly advanced the field of transfusion medicine.
NIH Behavior and Brain Imaging Research Study currently enrolling children and young adults (5-25 years old) with an XYY chromosome variation. Participation includes an initial 2-day outpatient visit and a visit every 2 years to the NIH Clinical Center in Bethesda, Maryland. Compensation, transportation, lodging, and meal allowance provided. (Study # 89-M-0006) Contact Jonathan Blumenthal, MA at email@example.com or 301-435-4516.
NIMH Research Study is currently seeking healthy male volunteers, 5-25 years old to participate in a study: Brain Imaging of Childhood Onset Psychiatric Disorders, Endocrine Disorders and Healthy Volunteers. There is one initial outpatient visit to the NIH Clinical Center for a physical, blood work, cognitive testing, and MRI scan of the brain and return visits every 2 years. Compensation is provided. (Study # 89-M-0006) Contact Jonathan Blumenthal, MA at firstname.lastname@example.org or 301-435-4516.
NIAAA researchers at the National Institutes of Health (NIH) seek volunteers, 21-60 years of age, who drink more than 15 - 20 alcoholic beverages per week, to participate in a study researching if a medication reduces drinking. Compensation may be provide. (Study # 16-AA-0037) Contact NIAAA HP Section at 301-827-0905.
NHLBI study team seeks healthy adults for a research study. Researchers are studying cells taken from the lungs of healthy individuals to compare to cells taken from individuals with asthma and other lung diseases. Compensation provided for participation. (Study #99-H-0076)
For more information on the studies above or others available, call the NIH Office of Patient Recruitment 1-866-444-2214, (TTY 1-866- 411-1010) or visit www.clinicaltrials.gov.
This Thanksgiving, cook up your unique recipe for wellness and disease prevention and create a family health portrait using the Family Health History tool created by the U.S. Surgeon General with help from the National Human Genome Research Institute, part of the National Institutes of Health.
Why is it important to discuss your family's health history? Diseases such as cancer, diabetes and heart disease often inherited, meaning that they run in families. Tracing illnesses suffered by your parents, grandparents and other blood relatives can help your healthcare practitioner predict your risk for specific diseases and make vital screening and treatment decisions before any disease is evident.
Precision Medicine is an emerging approach for health promotion and disease prevention that takes into consideration the genes, environment and lifestyle of each person. Many efforts are underway to help make precision medicine the norm in every day clinical practice. However, there will always be a place for family health history as a no-cost component of your personalized healthcare.
With the Surgeon General's online tool, My Family Health Portrait, people can record their family health history before going to medical appointments. In addition, the tool allows users to save their family history information to their own computer and share health history information with other family members. The tool is available in English, Spanish, Italian and Portuguese.
Before you start using this tool, ask family members for details about their health histories as well as the health histories of older relatives. Ideally, a family health history should contain health information about at least three generations, listing the diseases and conditions that have affected family members, the age a disease was diagnosed and, in the case of deceased family members, the cause of death. The most important relatives to include are parents, siblings and children. View tips on starting the conversations.
Family Caregiver Day Fair and Expo
Nov. 15, 2016, 11:00 a.m. – 2:00 p.m.
7th floor, Clinical Research Center
NIH and outside exhibitor resources will be available for family caregivers. No registration required.
Gingerbread House Decorating Contest
Dec. 5, 2016 – Jan. 3, 2017
Enjoy the 13th annual contest and vote for your favorite decorated house in person or on Facebook [disclaimer]. For more information, contact Ann Marie Matlock.
NIH Clinical Center Director's Annual Address and Awards Ceremony
Dec. 16, 2016, 1:00 p.m. – 3:00 p.m.
Building 10, Masur Auditorium
The event will honor CC employees and their exemplary contributions to NIH.