A University of Iowa pharmacy professor will launch a dementia study with support from a new federal agency created by the Affordable Care Act.
Ryan Carnahan will test whether activities and more thorough medical workups for dementia patients might reduce the use of anti-psychotic drugs, which run the risk of side effects such as strokes, movement problems and lethargy.
“I think there's not a lot of expertise in the nondrug strategies,” he said.
Carnahan was the only researcher in Iowa or Nebraska with a project funded in the first round of money granted by a new agency, the Patient-Centered Outcomes Research Institute. The first round — $41 million for 25 projects, an average of $1.64 million per project — went out in December. Another round is scheduled to be awarded this spring, and at least four metro-area researchers have proposed projects for funding.
Some $350 million will go to researchers this year. Through 2019, $3.5 billion is budgeted for the new institute, known as PCORI.
While PCORI has received minimal attention, it has won applause from scientists for its focus on real-world research that seeks input from patients and strives to benefit them.
Critics have an easy target, though. The institute is funded in part by $1 and $2 fees that are assessed annually against each person covered by Medicare, commercial insurance packages and self-insured plans.
“We're basically throwing more money on the fire as far as higher premiums for individuals,” Sean McGuire, who heads an Omaha health care consulting firm, said of PCORI. “At the end of the day, it generates a report that sits on somebody's desk.”
But Jerome Rewolinski, director of account management at Blue Cross Blue Shield of Nebraska, said he liked this part of the Affordable Care Act. “It's searching to improve the quality and effectiveness of health care nationwide,” Rewolinski said.
PCORI recognizes that patients face tough decisions when afflicted with pain or disease, and that they have few places to turn to for information. Many simply rely on their physicians to make choices about whether surgery or rest is best, what medication is right for them, whether to receive care at home or in a clinic, and thousands of other decisions.
The institute aims to provide better information to patients and physicians.
Carnahan, a doctor of pharmacy, said that roughly 10 percent of anti-psychotic drug use for dementia patients is inappropriate. Even in cases where the use is appropriate, it might be replaced or decreased.
Carnahan hopes to show families, physicians and nursing home providers that activities can prevent the need for anti-psychotic drugs among some dementia patients.
Activities may include dominoes with pictures on them and a form of tetherball. A thorough medical and environmental workup might reveal that the patient has shoulder pain that causes him to lash out when putting on his shirt, or that certain sounds in the nursing home agitate him.
Carnahan will compare patient behavior when non-drug strategies are emphasized with the behavior of those who receive anti-psychotic drugs as usual.
“We recognize that there is a lot of gray area in ... caring for someone with dementia,” Carnahan said.
His project was awarded $1.6 million over three years from PCORI.
Critics of the Affordable Care Act who predicted that it would lead to rationing of care or “death panels” included PCORI among the offending entities.
Dr. Joe Selby, executive director of the institute, said some thought the research would compare costs and simply support the cheapest treatments. But his agency won't consider the costs of care in its research, he said.
Another entity created by the Affordable Care Act, the Innovation Center of the Centers for Medicare & Medicaid, deals with cost, supporting development and testing of innovative medical payment and service delivery models. Projects to bundle hospital bills into one, serve the homeless and coordinate care are being funded in the Omaha metro area, Lincoln, western Nebraska, Sioux City, Iowa, and elsewhere.
Some $10 billion is allocated to the Innovation Center through 2019.
Selby, a family physician, oversaw the research division of Kaiser Permanente in northern California before becoming PCORI's first employee. The institute, created to be independent of government, now has 62 employees. Selby said research findings will be distributed in medical journals, through the mainstream press, on the Internet and other ways.
He said he has a 60-year-old friend who broke her shoulder, and an orthopedic surgeon recommended surgery. Yet another provider recommended a cast or splint and eventually physical therapy.
“That's the kind of choice that patients face, and they don't often get great help, because clinicians view it differently,” Selby said in an interview. “And more evidence, I think, will be helpful.”
PCORI, based in Washington, D.C., is set up to continue until September 2019 with a congressional review in 2017 on whether the agency should live beyond 2019.
At least four researchers in Omaha have proposals for consideration in the second round of PCORI money:
» At Creighton University, Michael Monaghan would test two ways for pharmacists to provide their expertise. In one, a pharmacist would work in one clinic as an employee. In the other, the pharmacist would work with the clinic remotely through electronic and telephone contact. Monaghan would compare the two strategies by patient and physician satisfaction, effect on patient health, medication adherence and other factors. Monaghan is chairman of pharmacy practice at Creighton.
» At the University of Nebraska Medical Center, physical therapist Reggie Harbourne hopes to study whether health coaches, or “navigators,” can help families make decisions for children with cerebral palsy to achieve optimal skills and satisfaction. Those decisions can involve whether to operate on the child's legs or loosen them through exercise, and whether to encourage an adolescent child with cerebral palsy to work on walking skills or simply use a wheelchair.
» Dr. Nizar Wehbi at UNMC has applied to PCORI to examine whether medical providers communicate clearly with rural residents and Hispanics, and may hold workshops for providers and patients to improve communication between the two. Wehbi is a physician in UNMC's College of Public Health.
» Dr. Monirul Islam of UNMC would examine what patients with stage four lung cancer, which generally kills within 18 months, consider successful treatment. Patients may desire chemotherapy that doesn't cause hair loss, for instance, or insomnia. The study would examine whether oncologists factor such patient desires into the chemotherapy regimen and whether they would change the treatment protocol if they knew what the patient desired. Islam is an assistant professor of epidemiology in the College of Public Health.
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