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The ARHP Honors Health Professionals for their Contributions to Rheumatology
by Richard Quinn
At the 2012 ACR/ARHP Annual Meeting in Washington, D.C., the ACR and the ARHP honored a group of distinguished individuals who have made significant contributions to rheumatology research, education, and patient care. The Rheumatologist spoke with the ARHP winners about their individual contributions to advancing rheumatology. (See the December 2012 issue for Q&As with the ACR award winners.)
ARHP Lifetime Achievement Award
Saralynn Allaire, ScD
Professor of Medicine, Boston University
Background: Dr. Allaire’s career gravitated to rheumatology practice and research in large part because of her own struggle with rheumatoid arthritis (RA). She was diagnosed with the condition as a young adult. Trained as a pediatric nurse, it was the difficulties of working with RA on a hospital unit that guided her to a career in which she could use her “communication skills and thinking skills,” she says. She has worked at Boston University since 1980, earning her doctorate in rehabilitation counseling in 1990 and becoming a professor of medicine in 2006. Her research focuses on work disability in relation to arthritis and interventions for it. Her groundbreaking research, a randomized trial conducted from 1997–2002, proved that early intervention with rehabilitation counseling can prevent work disability for RA patients. An internationally recognized expert and speaker, Dr. Allaire has been first author on 29 abstracts at ACR annual meetings and was named the ARHP’s Distinguished Lecturer in 2007.
“My research results have been positive,” she says. “That’s the most gratifying part of my research. Finding something that works and hoping that it can get put into practice and be available to help other people, because rheumatoid arthritis has had such an important impact on my ability to work, and I know it does with others; it’s such an important issue.”
Q: What is the number-one take-home message you have for your peers?
A: Address employment issues early. Get a person thinking early, so they can plan ahead. My research has shown that is effective, and it does help people work longer, just by thinking and planning ahead and figuring out what the problems are and working on correcting those problems. Whether it’s getting yourself into another job, or if you’re having difficulties at your current job, there are things you can do to alleviate those problems. If you do those things early, then you’ll preserve your ability to work.
Q: What are the biggest obstacles persons with RA face in the workplace?
A: I think it varies. I found commuting to be a major obstacle, and the need to reduce burden, both in home activities as well as at-work activities. You need to get yourself into the kind of job where it’s the kind of work you can do.
Q: How can rheumatologists help RA patients with workplace needs?
A: The key to success is to get it addressed early. Just bringing it up to a patient early—before a patient ever mentions it—and realizing that a lot of patients are probably never going to mention it—and then getting them to give some thought to it.
Q: What does a lifetime achievement award mean to you?
A: To me it reflects the work that I’ve done professionally, but also on a volunteer basis. I have held a number of volunteer positions with the American Rheumatism Association [which was renamed the ACR in 1988), and I’ve done quite a bit with the Arthritis Foundation. I’ve been active on a variety of fronts, both professional and in volunteer work. It’s important to me because it reflects that whole body of work. In some ways it’s been so easy for me to maintain my long-term interest in this field because of my personal interest, but I feel like I’ve been able to give back to other people with arthritis, too, through my work, which is very gratifying.
ARHP Addie Thomas Service Award
Kathleen Arntsen, BA
President and Chief Executive Officer, Lupus Foundation of Mid and Northern New York, Inc., Verona, N.Y.
Background: Diagnosed with lupus as a senior in college, doctors gave Arntsen a “dismal” prognosis and told her family to remove her from school and “enjoy the time you have with her.” She was forced to quit the rugby team, was dropped from the European study group, and gave up her dream to live her life “as a Danielle Steele character.” Instead, she joined a lupus support group. The more she started to share, the more people were drawn to her and her positive attitude. The “natural thing to do” was to volunteer with the local Lupus Foundation, she says. Twenty-six years later, Arntsen has combined her condition, her can-do attitude, and her background in marketing and medical claims processing to become one of the strongest lupus advocates in the nation.
“I have a unique ability to give a perspective to legislators, the public, physicians, whoever the audience is, from a very special viewpoint,” she says. “Being a patient gives me a double-edged sword. I walk the walk, talk the talk, and live the life.”
Arntsen joined ARHP in 2003 and was the 2007 recipient of ARHP’s Ann Kunkel Advocacy Award. She has testified before Congress, the U.S. Food and Drug Administration, and multiple state legislative bodies. She is passionate about ensuring that all Americans have access to affordable and appropriate medical care.
“We can’t just focus on a cure, we must also teach people to live with their disease and manage it,” she says. “I think it is also very important for every American to understand they have a voice and they can’t just sit there and debate whether they should participate. I always tell people to turn your outrage into action, and turn your emotion into motion.”
Q: How does being both an advocate and a patient help you?
A: First and foremost, I have to wear many hats. But I am a patient and I have to put myself first, my health first. Everything I do has to be scheduled around my medical appointments, tests, and rest, etc. As a patient, I know firsthand what needs to be improved, and being an advocate fills a void in my life. I know that what I am doing what I was meant to do by being an advocate.
Q: You say access and affordability issues are priority, especially with the U.S.’s aging population. Why is that so important?
A: Access issues really are about someone else dictating your healthcare. If that doesn’t make the average American angry, I don’t know what would propel them to take action. The only people making decisions about people with health issues should be healthcare providers that are most familiar with that patient’s individual situation. It should not be Congress. It should not be public policy officials. It should not be insurance claims processors. It should be between patient and provider, period.
Q: What do you foresee for the future for autoimmune diseases?
A: I see about 14 specialists regularly. I wish I had one or two specialists who managed my multiple autoimmune conditions. I wish we had patient-centered healthcare that addressed special, individualized treatment. We have a few centers in this country, including Johns Hopkins, but getting the funding and changing old-school mindsets and the way we teach healthcare providers in this country needs to be reformed.
ARHP Distinguished Scholar Award
Elena Losina, PhD
Co-Director of Orthopedic and Arthritis Center for Outcomes Research (ORACORe), Brigham and Women’s Hospital, Associate Professor of Orthopedic Surgery, Harvard Medical School, Boston
Background: Dr. Losina immigrated to the U.S. after earning a master’s degree in mathematics from Odessa University in Ukraine. She earned a PhD in biostatistics from Boston University, and in 2006 joined Brigham and Women’s and Harvard as center co-director and director of methodology of ORACORe, as well as director of the methodology core of the National Institute for Arthritis and Musculoskeletal and Skin Diseases–funded Brigham Multidisciplinary Clinical Research Center. She and her colleague, Jeffrey Katz, MD, lead a core team of four faculty members, five research assistants, several statisticians, one administrative director, and one administrative coordinator. The team works with centers around the country with “amazing collaborators who have a lot to contribute and share,” she says. A mathematician by training, Dr. Losina says she has found her “dream job” by combining math and medicine. Her main interest is using computer simulation to model the natural history, prevention, and management of chronic diseases.
“The modeling approach is a very powerful methodology that allows us to synthesize multiple pieces of evidence that are arising from molecular science, clinical science, and health policy science—to portray the disease as a multidimensional process,” she says.
Dr. Losina is internationally recognized for her work in osteoarthritis (OA), health policy research, and outcomes research. More than half of her 225 peer-reviewed publications have focused on musculoskeletal research. She joined the ARHP in 2003, has presented her scientific findings at annual meetings and, since 2009, has been an ARHP representative to the Committee of Journal Publications at the ACR.
Q: A lot of research around osteoarthritis has been published in recent years. How is your team working to synthesize all the new information?
A: Many practicing rheumatologists would identify with the fact that many journal papers now are focused on short-term treatments. But, I think, they also know that OA is a long-term condition. The question is how to combine the piecewise information about the impact of a particular treatment over a short period of time with the understanding that OA is a long-term chronic disease still remains unanswered. Modeling helps to combine all pieces of evidence together. It helps physicians to portray the future risk of OA development and benefits of prevention and a particular treatment for their patients.
Q: What advice do you have for the next generation of researchers?
A: I think it is important to have a very good theoretical basis, but no less important to find great mentors. I was blessed to have Dr. Jeffrey Katz, who really taught me a lot of clinical rheumatology. But also, build your dream team. If you have a great idea, it is important to share those ideas with smart, kind, hard-working people. Team effort and great mentorship are the keys to success.
Q: What is the most gratifying part of your work?
A: That is very, very easy. To see your mentees getting their research published, coming up with great ideas, and getting some recognition and honors for it. That’s the best part.
Q: What do you think the future of rheumatology holds?
A: I think translational research is very promising. The goal is to connect basic science with drug development and to identify effective and efficient treatment strategies and ways to implement them effectively. With the advent of all the genomics and proteomics combined with greater computer power and novel statistical methodologies, researchers have wonderful tools to expedite drug development.
ARHP Ann Kunkel Advocacy Award
Deborah McCloskey, RN, BSN
Nurse Manager, Clinical Research Center, UMDNJ-Robert Wood Johnson Medical School, New Brunswick, N.J.
Background: McCloskey began her nursing career in 1974 in the critical-care setting and earned her bachelor’s degree in nursing in 1985. In 1988, a colleague encouraged her to interview for a position with a research team investigating scleroderma patients in the Department of Rheumatology at UMDNJ-Robert Wood Johnson Medical School.
“It was perfect for me,” she says. “I was hooked. I really enjoyed working with the scleroderma patients and with the research process. Scleroderma is such a complex illness involving so many of the internal organs … my critical-care background was put to good use. It was a good fit, and I never left.”
McCloskey has long been an active ARHP volunteer, having made numerous trips to Capitol Hill with the ACR Advocates for Arthritis program. She has served in various capacities on the Advocacy Committee, ACR Government Affairs Committee, ARHP Executive Committee, and the ACR Political Action Committee. The nurse manager at the UMDNJ Clinical Research Center since 2007, Ms. McCloskey is the recipient of the ARHP 40th Anniversary Star Award, as well as the ACR Advocate of the Month award.
“I always felt very strongly that it was my responsibility, as an RN, to advocate for my patients,” she says. “When I went on my first trip to Capitol Hill, I loved it. I was impressed with how little Congress knew about rheumatology, what the umbrella of different disease processes that rheumatology encompassed, and how many healthcare professionals work in that field. It was very exciting.”
Q: What are the first steps in becoming an advocate?
A: The ACR website has a lot of information on current issues. From the comfort of your office, you can visit the website to see what’s going on and what is important. There are links to your Congressmen, and you can send a memo to your Congressmen saying, “I need you to support this bill, this is important to me.” I think people need to realize your Congressmen are there to do a job for you. If you speak up, they will listen. That’s a very easy way to participate in the process.
Q: Why, in the 21st century, are we still dealing with access issues?
A: Access is everything. We are so fortunate today to have medications that treat the disease process, and not just the symptoms, but they are expensive, so how do we get access to the patients that need them? From a care perspective, rheumatology is not as accessible as internal medicine or cardiology or other well-known professions, so does a patient have access to a rheumatologist who can treat his or her disease? Another big issue is pediatric rheumatology. There are still states that do not have any pediatric rheumatologists. How do those children get access to care?
Q: What is the one thing most healthcare providers need to know about advocacy?
A: We cannot make the assumption that, if a bill is out there, our Congressmen actually know everything they need to know to make a meaningful vote. They rely on us to inform them....And you don’t need to communicate directly with your Congressmen. Their staffers, locally and in D.C., have the ear of the Congressmen. If you speak to them, you have your foot in the door.
ARHP President’s Award
Geri Neuberger, APRN, MN, Ed
Professor, University of Kansas School of Nursing, Kansas City
Background: Dr. Neuberger has been an educator at the University of Kansas since 1971, but her passion for rheumatology is more personal than that. She was in her first educational program studying nursing when her mother got RA. Later, her sister got it as well. She focused her thesis and doctoral dissertation or patients with arthritis, and a lifelong devotion was born. At the beginning of her career, she balanced clinical work with research, but working with students became her preferred path. In addition to her teaching load, she has also been a camp nurse, college campus nurse, maternity staff nurse, and medical–surgical nurse. From July 2010 to October 2012, Dr. Neuberger served as scientific editor for a series of five online modules, Fundamentals of Rheumatology, for nurses and other healthcare professionals. She recruited, and credits, the following authors: Donna Nativio, PhD, CRNP, FAAN; Maura McCall, MSN, RN; Kori Dewing, DNP, ARNP; Karen Kerr, MSN, NP, CPNP, PNP-BC; Cora Vizcarra RN, BSN, CRNI, MBA; and Joyce Carlone, MN, FNP-BC, CCRC. She also credits ARHP staff members Ramona Hilliard and Emily Delzell.
Q: In 2011, you earned the ARHP Master Educator Award, and now, the President’s Award. What do these honors tell you?
A: I’m humbled by the honor of receiving the award, and I like to feel that I can continue to learn and contribute to the science of healthcare. We all are striving in the healthcare field to assist people to their highest level of health. I try to identify with patients that it’s not easy to be adherent to treatment and things that you have to do every day, but it’s worth the effort, and that you may fall off the wagon, but it doesn’t mean you can’t get back on track the next week. They’re human beings, just like we are. We’re on this journey together.
Q: You talk about the differences between the clinical and academic worlds. What’s kept you focused for so long on the teaching?
A: Ever since I started school, I liked learning, and in a university setting, things do not remain static. You are constantly learning. It’s not something you learn and then you do the same thing every day. Teaching methods change, and new discoveries are made. What I teach has a lot of variety about a lot of different diseases, so it’s like constantly being a student. To be a teacher, you’re a student the rest of your life.
Q: With all your commitments, you manage to stay involved with the ARHP. Why do you set aside that time?
A: I do because it’s the only organization that I belong to that is multidisciplinary. I belong to some nursing organizations, but the ACR and the ARHP members are nurses, occupational therapists, physical therapists, psychologists, social workers, dieticians, and I’m leaving out some. I enjoy hearing and learning about their contributions to the care of patients with rheumatic disease, and I’ve learned a lot from them. When I go to a national meeting, I’m not just hearing what nurses are doing, but I’m hearing about new findings from the physicians and all of these other disciplines that contribute to the overall healthcare plan for persons with a rheumatic disease.
ARHP Master Educator Award
Carol Oatis, PT, PhD
Professor, Department of Physical Therapy, Arcadia University, Glenside, Pa.
Background: Dr. Oatis has practiced physical therapy (PT) literally all over the United States. She graduated from Marquette University in Milwaukee in 1973 with a BS in physical therapy and her first job was as a staff therapist at Rancho Los Amigos Hospital in Downey, Calif. After a year, she moved to Philadelphia to earn her doctorate at the University of Pennsylvania. She held several positions around Philadelphia before taking a teaching position in 1982 at Beaver College (now Arcadia University). In all those stops, she concentrated on arthritis, with a focus in biomechanics and kinesiology. A former president of ARHP, she is an active member who has presented at multiple national meetings. She has also encouraged nearly 40 of her students to present at both ARHP and American Physical Therapy Association meetings.
“Watching students present their research and then confidently and knowledgeably join in scholarly discussion is always a thrill to me,” she says.
Q: What is the value of bringing the next generation of rheumatology professionals to annual meetings and experiencing that sense of community?
A: One is that it’s great for these students to see such diverse research, and to see that there are so many different disciplines focusing on problems that are important to physical therapists, to recognize that other people think they’re important as well. And then just to recognize the power of talking to so many people in different disciplines, that while we all share a common interest, we all bring a different expertise and perspective, and that diversity is a very powerful instrument to address research questions and clinical questions. Whether these students go on to research careers is probably not as important as recognizing the power of a multidisciplinary focus on addressing chronic disorders.
Q: What do you see as the future for PT?
A: The bigger issue is to help physical therapists as well as other practitioners figure out how to focus on a chronic disorder in the current healthcare system and to think more broadly about the best ways to address chronic disorders. Seeing a multidisciplinary approach gives physicians, rheumatology fellows, PTs—all of our disciplines—a better perspective to recognize that no one can have all of the answers, and that we have to address chronic disease using a lot of different tools and a lot of different disciplines.
Q: Where is PT’s place in that discussion?
A: We certainly can contribute to addressing the impairments and functional loss that result from rheumatologic disorders ... but I think patients and physicians don’t always appreciate the role of PT throughout that spectrum. I think that most people recognize that PT is needed after surgery, but I don’t think other disciplines—and frankly, PTs themselves—always see PTs having a role across the spectrum. I think our job in the current generation is to help PTs, patients, and other healthcare providers recognize that we can contribute all the way through, and that we need to have a perspective of wellness and health as well as a perspective of recovering from impairment.
Q: Does an award from ARHP to a therapist help raise that awareness?
A: Yes, I think it does, and I hope the award sheds light on the value of interdisciplinary collaboration and the roles that all of us play together through the spectrum of the healthcare system. We need to move from these prescribed niches to working as a team with a much broader perspective.
ARHP Master Educator Award
Janet Poole, PhD, OTR/L
Professor, Occupational Therapy Graduate Program, University of New Mexico, Albuquerque
Background: A Southern California native, Dr. Poole has traveled far and wide in her career. She earned her bachelor’s degree in occupational therapy from Colorado State University in Fort Collins in 1975. She earned her master’s from the University of North Carolina in Chapel Hill, N.C. in 1984, and then her PhD from the University of Pittsburgh in 1995. She has been at the University of New Mexico since the summer of 1983. But it was during a stint in the late 1970s at the Towers Rehabilitation Unit at the University of Virginia Hospital that she began working with people with arthritis. Her next position, in Pittsburgh working under Drs. Thomas Medsger and Virginia Steen, helped develop her interest in scleroderma.
“I met Dr. Medsger the second day of my job, as he wanted an occupational therapist to come to scleroderma clinic and evaluate people’s hand function and follow them over time. Drs. Medsger and Steen and their patients taught me about scleroderma and how the disease affected the patients. They were compassionate and dedicated and helped me see the need for occupational therapy.” Since the mid-1980s, she’s been an active member of ARHP and has served on multiple committees. She is a frequent presenter at meetings, and recently presented at both the patient and medical conferences at the Second World Congress in Madrid.
Q: What was the experience of presenting at both conferences of the Second World Congress like?
A: It was great to present at both. Speaking at the patient conference was different than what I have done in the U.S., as there were so many people. Usually, I can walk around and actually show and watch people do the exercises. It was hard to do in a big group, but manageable. I think that speaking at patient conferences is very important, as many patients have not been referred to occupational therapy and do not know about the hand and face exercises for people with scleroderma and some of the assistive devices that can help manage daily activities. Hopefully, knowing about these and occupational therapy will encourage patients to ask their rheumatologists for a referral to therapy. As far as speaking at the medical conference, it was an opportunity to talk about the evidence for interventions to improve hand function in people with scleroderma, again, so rheumatologists know that therapy is important, there is evidence supporting the interventions, and therapy can make changes in their patients.
Q: What keeps you active in ARHP?
A: I really enjoy working with the occupational therapists and health professionals from other disciplines as well as the rheumatologists. I think this gives me a broader perspective. It was especially important for networking, as I meet other health professionals with expertise with scleroderma that I cannot get from my own professional association. Not too many occupational therapists work with people with scleroderma.
Q: What does this award mean to you, especially knowing you were nominated anonymously?
A: I am very honored that someone thought me worthy of nomination for the award, as there are many wonderful people in the ARHP! I was very pleased to receive this award, and thank the person who nominated me.
Richard Quinn is a freelance writer based in New Jersey.