A medical researcher might find a new way to prevent or manage disease, but the discovery would only benefit patients everywhere if the research were translated into actions carried out by communities. Community-based research takes partnerships with health professionals, non-profit organizations and the public to bring about better health for all.
While collaborations can be challenging, the rewards are great. Think of the impact of a new biomedical test that allows doctors to recognize autism in babies for early intervention, a culturally sensitive social program that helps Native American children address weight issues or a telemedicine network that helps schools identify and serve teens with mental illness. Such projects are, in fact, real examples of how UC Davis is working with communities to bring the benefits of medical research to all.
Irva Hertz-Picciotto is searching for clues that could lead to earlier detection of autism and, possibly, its prevention. Little is known about what causes this neurodevelopmental disorder, but some aspects of the prenatal environment appear to be involved. Children with autism seem to have differences in gene expression that affect their immune systems, says Hertz-Picciotto, a professor of public health sciences. http://phs.ucdavis.edu/
To pinpoint the origins of autism, she, and experts in genetics; obstetrics and gynecology; immunology; molecular biology; neurology; developmental pediatrics; and animal behavior, designed a study called MARBLES (Markers of Autism Risk in Babies – Learning Early Signs). The study recruits women who already have at least one child with autism and are therefore at higher risk to have another child with the condition. During the next pregnancy, each mother records information about her diet, illnesses and unusual exposures or traumatic events that may occur. After delivery, the researchers regularly collect blood samples from the babies and look for signs of unusual physiology or development.
"We're trying to go back in time to find out: What are the differences in autistic children and when do they begin?" says Hertz-Picciotto.
It will be several years before the researchers know which of the MARBLES children have autism and whether they share anything in common, but the study is designed to yield critical clinical advances.
"The study is very translational in the way it reach3s out to families through surveillance, early prediction and perhaps diagnostic tests for children of ages 2 to 5," says Hertz-Picciotto.
Moreover, she says, if the researchers identify an important environmental factor, they could develop a strategy to prevent autism – for instance, by advising behavioral changes to limit mothers' exposures or by advocating that suspect chemicals be banned from consumer products.
If an immune deficiency turns out to be key, researchers could try to develop drugs to restore the child's defenses. Whatever the researchers learn, the new information should lead to better interventions for dealing with autism.
MARBLES is just the first step, though. An even more ambitious community-based research project called the National Children's Study is now in the works. UC Davis will participate in this nationwide hunt to find environmental factors involved in many common childhood afflictions, including diabetes, obesity, attention deficit hyperactivity disorder (ADHD), asthma, injuries and autism.
The UC Davis team will enroll 1,000 local women before they conceive or early in their pregnancy and then track the health of their babies, while evaluating the quality of their physical, social, dietary and microbial environments.
"This is a prospective study, and we'll be casting the widest possible net," says Hertz-Picciotto.
The fieldwork begins in 2010, but she has already begun meeting with community partners in the Sacramento area to develop study protocols.
Extending health-care's reach
Working with community partners is a critical step toward translating research into effective public health programs, even if some communities are difficult to reach. That's true of California Native Americans, half of whom live in rural rancherias – family communities smaller than reservations – with limited access to health care.
Many Native Americans hold a dim view of health research because their perception is that it rarely, if ever, serves them, says Dennis Styne, who holds the Rumsey Chair for Pediatric Endocrinology at UC Davis.
"Our programs are aimed at decreasing that suspicion and encouraging participation to improve the health of their communities," he says.
For over a decade, Styne has worked with the Rumsey Band of Wintun Indians and other California tribes to help them prevent childhood obesity – a nationwide epidemic that affects the Indian population more than any other ethnic group.
Styne introduced Round Valley Indians to the Fit Kid and Fit Teen programs he developed at UC Davis. When adapted to the Native American culture, the programs had a positive impact, he says.
"It's a beautiful example of how we gave the program to the community, they adapted it, and now they will evaluate it and develop their own approach."
As he explains, "The assistance comes from us, but the leadership comes from them."
Styne is now proposing additional resources to boost community-based health research at two rancherias and a reservation. He's planning to help Indians in Northern California set up their own review board to oversee clinical study protocols.
"The local community will be in control of the approval process and ensuring the safety of individuals – that's never happened here before," he says.
The clinical research review board would complement several community-based research projects planned at Round Valley Indian Health Center in Covelo, Mendocino County, as well as North Valley Indian Health Center in Butte, Tehama and Glenn counties serving more than 15 tribes.
In addition, several health professionals with Native American backgrounds would be offered training at the UC Davis Clinical and Translational Science Center to help them conduct research. For example, one postdoctoral fellow plans to enlist teens to evaluate the availability of healthy foods in the Round Valley area. The researcher would receive statistics and epidemiology training and then launch a study to look at whether involving the teens in the project helps them make positive changes in their own lives and in their community.
Connecting with teens
Outreach to underserved teens is the goal of another community-based research project, as well. Elizabeth Miller, an assistant professor in pediatrics, plans to explore telemedicine as a way to deliver mental health services to children and adolescents.
According to Miller, there's a pressing need to translate mental health research into practices that better serve children. Poor mental health is strongly linked with low academic achievement, teen pregnancy, drug abuse and violent relationships, she says.
Yet, nationally, only a quarter of youth in need of mental health care get appropriate help, with African Americans and Latinos suffering the most. California reportedly has some of the lowest utilization rates for mental health care.
"In the next decade, we want to find innovative, culturally responsive ways to provide mental health services to kids and reduce long-term poor outcomes," Miller says.
As a first step toward this ambitious goal, Miller plans to determine the feasibility of using telemedicine in schools, in collaboration with the California School Health Centers Association, a nonprofit organization that represents clinics at 150 public schools, and the child-advocacy organization called The Children's Partnership. The technology allows patients to see and talk to health professionals remotely and has been successfully used to assess ADHD and other behavioral disorders, as well as to provide regular therapy to patients.
School-based telemedicine could potentially be an efficient and effective way to connect mental health professionals with youth, she says, even as budgets for school nurses and counselors are cut.
Initially, Miller's team will interview administrators and students at two rural school districts – in Fresno and Plumas counties – and develop a model for delivering networked mental health services successfully and in a sustainable way. The study will explore how schools with existing clinics could integrate remote mental health services. It also will look at setting up "virtual health clinics" from scratch because more than 8,000 California schools don't have on-site health centers.
"It's a really rich area to explore. As researchers, we think it's incredibly important to examine ways to support and sustain the translation and dissemination of evidence-based practices in communities," Miller says.