The National Association for the Advancement of Orthotics and Prosthetics (NAAOP) released its latest webcast in which Peter Thomas, JD, reports on September’s American Orthotics and Prosthetics Association (AOPA) National Assembly in San Diego. Kenton Kaufman, PhD, PE, principal investigator for the Limb Loss and Preservation Registry (LLPR) sought input from the O&P profession on his efforts to design and implement the registry. Earlier in September, Kaufman and his registry team convened the second meeting of a set of external stakeholders, established to provide advice to the registry team, Thomas said.
A quality improvement registry is a longitudinal database of clinical information on certain types of patients, which is primarily used to improve care. Once developed, the goal is to have healthcare providers and others use the database to forecast pathways of care and expected outcomes; develop and improve clinical practice guidelines; obtain reliable incidence and prevalence data, and aid patients in making evidence-based decisions about their healthcare choices.
For the LLPR to realize its promise, however, the O&P profession must embrace it, participate in it, and actively use it to help make clinical decisions and advise patients, Thomas said. The profession has an opportunity now that the U.S. Department of Defense and the National Institutes of Health have agreed to co-fund the development of the registry for five years. Collectively, the profession must succeed not only in developing a registry that offers value to participants, but it must be sustainable once the federal grant money is gone, he said.
Phase one of the registry involves the selection of three beta sites that will collect a limited set of data, primarily from existing electronic data sources, and begin the process of building the database of clinical information on patients who seek to preserve their limb after illness or injury, or who have lost their limb, whether or not they seek prosthetic care. Phase two will engage the O&P community to a greater extent, Thomas said. For instance, it will be important to work with manufacturers to better identify specific O&P components to match them with patient-reported O&P outcomes. Practitioners will be key participants in collecting clinical data on limb loss and preservation patients as well as encouraging patients to fill out patient-reported outcome measures, he said. “Eventually, we’ll have an incredible resource to rely on,” Thomas said.