MDNews - Long Island

The Great Divide? A 2015 STUDY conducted by the United Kingdom-based James Lind Alliance and published in Research Involvement and Engagement revealed marked differences between research priorities identifi ed by patients and the focus of clinical research. The objective of the James Lind Alliance is to establish research partnerships among patients, physicians and investigators, with a goal of identifying and prioritizing unanswered treatment questions, according to Cochrane Methods Priority Setting. The fi rst 14 of these partnerships were formed between 2007 and 2013. To determine whether the concerns of researchers matched those of patients, study authors compared treatment priorities identifi ed by patients participating in a partnership with the treatments studied in clinical research trials on the World Health Organization's International Clinical Trials Registry Platform between 2003 and 2012. Priorities diverged signifi cantly. Only 18.2 percent of patients participating in one of the partnerships listed medications as priority treatments. However, 37.2 percent of registered noncommercial trials and 86.3 percent of commercial trials examined studied drug and biological therapies. Nonpharmaceutical interventions, which were highly valued by patients and physicians, made up only 2.6 percent of registered commercial trials. in Canada's national kidney scientist training program, KRESCENT, has seen the value of translational research fi rsthand. In a 2015 review in the Canadian Journal of Kidney Health and Disease, she recounts how translational research in tissue typing has benefi ted patients undergoing kidney transplantation. "Tissue typing uses diagnostic techniques to test the histocompatibility between prospective donor kidneys and potential recipients," Farragher says. "An expanded pool of patients are eligible to receive kidney transplants because of advances in tissue typing, and their risk of graft rejection is also reduced. The collaboration that occurred between basic scientists and clinicians to develop, refi ne and implement tissue-typing techniques in clinical practice exemplifi es how translational research can lead to improved outcomes." Jean Slutsky, Chief Engagement and Dissemination O§ cer at the Patient-Centered Outcomes Research Institute (PCORI) — a U.S. organization dedicated to engaging patients and providing stakeholders with real-world outcomes they can use to make informed decisions — also attests to the benefi ts of patient-centered approaches. "One [2015 PCORI] research study examined the impact of a blood thinner on outcomes among stroke survivors after they left the hospital," Slutsky says. "A tradi- tional study might have focused only on whether patients had another stroke or side e ects like bleeding — important questions, to be sure. But in this study, researchers had asked patients what outcome was most important to them and learned that they cared most about how long they could live at home without su ering complications requiring additional hospital or nursing home care. The study found that taking the blood thinner did result in more time at home." POTENTIAL LIMITATIONS The discipline of translational science and the push to engage patients in research prioritization are relatively new endeavors. One potential limitation Dr. Kaufmann can foresee is the di§ culty associated with fi nding a unifi ed patient voice. Researchers could also abandon promising studies that may have subtle potential that isn't obvious to patients. To prevent such complications, Dr. Kaufmann stresses collaboration and education. "At the end of the day, it's all about setting [projects] up so there is good communication and mutual understanding," she says. "... There are ways to accommodate the potential research avenue that a researcher is excited about but may be too early to provide health benefi ts and, at the same time, meet the needs of patients and the doctors who treat them." ■ 2 7 M D N E W S .C O M /// M D N E W S L O N G I S L A N D ■ 2 016

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