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• W1988842256 abstract "LORRAINE TARNOVE is executive director of AMDA, which represents more than 7,000 medical directors, administrators, nurses, and other health professionals serving in long-term care settings. In an article in this issue of CARING FOR THE AGES (see page 9), William Ershler, MD, talks about his research on frailty in the elderly. He refers to the challenges of including nursing facility residents in research studies. Those of us who work in long-term care are all too familiar with this dilemma. Yet we also know that it is essential that we understand how various treatments, practices, innovations, and attitudes have an impact on diseases of aging and on how we care for elderly patients. While it may seem far beyond your goals as an administrator to conduct studies, you can work with your medical director to improve care and address quality issues by using—and even participating in—internal and external research studies. Facilities often are intimidated by the idea of being involved in research studies. Team leaders and staff are concerned about the time involved in collecting and recording data, administrative and legal staff worry about issues such as informed consent and privacy, and everyone wonders what effect the findings might have on a facility and how they might reflect on the facility's performance. Yet it can be immensely valuable to be involved in research, and the findings from even a small study can have a positive influence on care and outcomes. Here again, the medical director can help you determine what role research might play in your facility. He or she can also help you develop training initiatives and policies and procedures (P&Ps) necessary to do research. Start with AMDA's position statement, “Ethics in Long-Term Care Research.” This can serve as a basis for research P&Ps. If you plan to make a commitment to support a study, you may want to work with your medical director, director of nursing, and others to develop materials for residents and family members that discuss issues such as informed consent. The medical director can help determine what studies—generated internally by the quality assurance committee or externally by physicians or other researchers—are appropriate for your facility. The medical director also can help identify which residents could be included or excluded from studies or trials; identify published studies that are of value; work with residents, families, and staff to help them understand research; and help translate studies into quality practice, interventions, and care. Long-term care physicians have long understood the value of research in the field. In 1996, AMDA responded by establishing the AMDA Foundation, which sponsors studies of interest and importance to those involved in long-term care and provides education on how to conduct and interpret them. The foundation sponsors such programs at the AMDA Annual Symposium. The foundation also established the Long-Term Care Research Network, through which medical directors can propose studies and get them started, learn about studies they or their facilities can get involved in, and have access to experienced researchers nationwide. You can establish your own research goals and agenda by sitting down with the medical director and addressing the following: PIWhat research questions would we most like answered, and what kinds of studies might help us get these answers? PIWhich residents are viable candidates to participate in research studies? Are there studies we can participate in that don't involve informed consent? PIDo we have an informed consent process in place? If not, how do we create one? PIHow can we educate family members about research? Could we schedule a family night program on this topic? PIHow would our physicians, nurses, and others feel about being involved in research? How can we get their buy in? What can we do to make sure that studies don't create an undue burden on them? What training can we offer? PIAre any of our attending physicians or other practitioners involved in studies, or do they have research experience? If so, how can we partner with and learn from them? This conversation can help you decide what kinds of studies are most appropriate for your facility and your residents, and it will start an important dialogue on this issue. Your medical director can begin by looking at issues that arise through the quality assurance committee related to quality indicators, to determine whether there are any LTC Research Network studies that your facility could participate in, or to find researchers who could assist with a study you would like to initiate. It's OK—and usually advisable—to start small. Choose a research question that is relatively easy to answer. For example, you might want to examine physician and nurse attitudes and practices regarding diabetes treatment. This could involve a fairly simple survey questionnaire to be completed by your attending physicians and nursing staff. Even if your facility never participates in a study, it is essential that physicians, nurses, and others benefit from research findings. The medical director can help identify studies published in the Journal of the American Medical Directors Association and other clinical journals that are of interest to your facility and, as appropriate, work with staff to apply these findings to practice. With the hundreds of studies that are published each year, it is useful to have a knowledgeable gatekeeper on your side. Dr. Ershler talked about the challenges of informed consent, which is a crucial component of human-subject research—that is, studies that involve data obtained through an intervention with an individual or one that uses identifiable private information. Whether your medical director or another practitioner initiates a study, you agree to participate in an LTC Research Network or other study, or individual residents are identified by their physicians as potential subjects for a study, informed consent from the participant or his or her decision maker is necessary. For cognitively intact residents, consent forms and information about studies must be easy to read and understand. Remember that people may be hesitant to admit that they can't read, see, hear, or understand a written or spoken communication. Don't assume that if something makes sense to you, the next person can comprehend it as well. Informed consent forms should be: ▸ As short and simple as possible. ▸ Printed in large type on nonglossy paper. ▸ Written in lay language (at about a fifth grade level). Of course, it is not enough to hand a resident or family member a form to read or a video to watch. It is important to make sure that everyone involved understands what the research will entail. Discussions should include what medical costs will be covered as part of the study, what happens if the person—or his or her decision maker—wants to leave the study at some point, when a person might be removed from the study, and what will be expected of participants. Visuals are always helpful. For example, if the study involves a medical device, show it to the resident—and the family—and demonstrate how it will be used. Validate understanding with answers to questions such as, “What is this study about? What things will I need to do as part of the study? What happens if I get sick because of something having to do with the study?” There are numerous ethical and legal questions involving consent granted by cognitively impaired individuals. There are no easy answers, although consent may be sought through designated surrogates. However, having strong policies about research will help make sure that patients are not included in studies if ethical informed consent cannot be obtained. The National Institutes of Health offers a training program on “Human Participant Protections” (cme.cancer.gov/clinicaltrials/learning/humanparticipant-protections.asp). This is useful training for both your medical director and attending physicians. Understanding research—whether that means participating in a study, translating other studies to your resident-care practices, or just understanding the clinical evidence behind your P&Ps—is an important part of long-term care. Let your medical director bring evidence-based information and practice to your facility so your patients can benefit from research. ▸ AMDA Foundation and Long-Term Care Research Network: www.amdafoundation.org. ▸ Better Informed Consent: www.caringfortheages.com/article/S1526-4114(07)60042-0/fulltext. ▸ Translating Research into Practice: www.caringfortheages.com/article/S1526-4114(07)60060-2/fulltext. ▸ White Paper on Surrogate Decision-Making and Advance Care Planning in Long-Term Care: www.amda.com/governance/whitepapers/surrogate/index.cfm. ▸ Ethics of Long-Term Care Research Position Statement: www.amda.com/governance/resolutions/m03.cfm." @default.
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• W1988842256 title "Research Has a Place in Your Nursing Facility" @default.
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