In recent years much research has been done outlining the health care disparities that exist between minority populations and the Caucasian majority. Now it’s time to do something about those inequalities by testing solutions and putting interventions in place.
This is the thinking behind a nationwide program funded by the federal Agency for Healthcare Research and Quality (AHRQ). The agency has awarded five-year grants to nine Excellence Centers To Eliminate Ethnic/Racial Disparities (EXCEED):
• Morehouse School of Medicine (Atlanta)
• University of Pittsburgh
• Mount Sinai School of Medicine (New York, N.Y.)
• University of North Carolina (Chapel Hill)
• University of California, San Francisco
• Baylor College of Medicine (Houston)
• University of California, Los Angeles
• Medical University of South Carolina (Charleston)
• University of Colorado Health Sciences Center (Denver)
“A lot of the research on disparities had been effective in identifying [problem areas] but less effective and less advanced in understanding why they existed and what could be done about them,” says Daniel Stryer, MD, who was AHRQ’s senior medical officer when the EXCEED program was launched some four years ago. “EXCEED was designed to take research on disparities to the next level, to build on the work that had been done, documenting a lot of disparities, trying to understand why they exist and what can be done [to eliminate] them.”
Each center is working on between four and nine projects, according to Stryer, now the director of AHRQ’s Center for Quality Improvement and Patient Safety. “The centers were also set up to develop greater capacity to study minority health issues,” he adds, “and to train minority researchers as well as others who are interested in racial and ethnic disparities.”
AHRQ is supporting the projects in partnership with several other Department of Health and Human Services agencies, including the National Center on Minority Health and Health Disparities. Stryer says AHRQ hopes the lessons learned through EXCEED’s research, including practical tools and strategies to eliminate disparities, will be generalized beyond the communities studied so they can be used nationwide.
EXCEED aims to foster efforts to augment the research skills and abilities of ethnically diverse researchers and institutions. Building relationships with communities and local organizations and working with community health centers and other health care groups serving ethnically diverse populations is also part of the EXCEED strategy.
Multidisciplinary teams are doing the research, with nurses playing major roles. “Nurses can often overcome cultural barriers and help reduce those barriers,” Stryer says.
At Morehouse School of Medicine, a historically black institution, EXCEED’s theme is “Access and Quality of Care for Vulnerable Black Populations.” The research seeks to identify and examine effective interventions for chronically ill African-American adults and low-income children who receive care from community providers in inner city and rural areas.
The principal investigator, Robert M. Mayberry, MPH, PhD, a professor and director of the Program for Healthcare Effectiveness Research at the school’s Clinical Research Center (CRC), has nurses working in key EXCEED roles. Nurses of color, he says, add a level of sensitivity, understanding and deep insight, which comes from having a similar cultural perspective to that of the project participants.
“Typically persons from the same cultural, historical and social environment relate, can translate, can understand and can be more supportive than someone who is coming from outside of that environment,” explains Mayberry, who is African American. “That becomes the key reason why the minority nurse becomes so critical in these types of interventions.”
Patricia Jackson, RN, an African-American clinical research nurse at the CRC, works on the “Telehealth Heart Failure Project to Improve Access and Adherence” study. This EXCEED project delivers intensive education and risk factor modification via a computer-based telemonitoring system. The project focuses on high-risk patients with a primary diagnosis of congestive heart failure. They have been randomized into two groups--an intervention group and a “usual care” group.
So far 106 patients have been enrolled for a three-month monitoring period. Mayberry hopes to increase enrollment to 240. Every patient in the study has an in-person quality of life assessment done one-on-one with Jackson at baseline or enrollment in the study, and then at 30 days, 90 days, six months and a year via telephone.
“Usual care” patients continue to go to their physicians and follow their care plans. If problems arise they can beep Jackson 24 hours a day. She also verifies hospitalization and clinic visits by reviewing hospital discharge or other health services records.
The intervention group patients receive telemonitoring equipment, which includes a setup for a stethoscope and a scale. On her initial visits, Jackson teaches patients how to use the equipment. “It is a like a little computer in their home with a camcorder on top, where I can see them and they can see me,” she says. “I can take their vital signs, blood pressure and weight. I listen to their heart sounds and their lung sounds.”
The protocol seeks to reduce emergency room, clinic or hospital visits, Jackson explains. “With this we are able to detect and correct clinical deterioration and complications quicker, so their hospitalizations and ER visits are kept to a minimum.”
Her job requires travel to patients’ homes, hospitals and clinics. Oftentimes, she says, elderly people in the rural areas don’t get appropriate care. Some may live 45 minutes to an hour from the hospital or in small country towns that don’t have health care facilities. “By doing this you are teaching them to be more compliant and to take care of themselves,” Jackson says.
Another EXCEED project at Morehouse where an African-American nurse is playing a key role is “Translating Prevention Research into Primary Practice.” This demonstration project aims to improve and increase the delivery of preventive care services within the medical school’s physician practice plan, Morehouse Medical Associates, Inc. (MMA).
The project includes a randomized controlled trial comparing two ways of delivering preventive services to predominately African-American, low-income, inner city patients from Atlanta served by MMA. There are 240 patients in the study, split into a nurse-mediated group and a traditional physician reminder group.
Adult outpatients, 18 years of age and older, are eligible for the study and are recruited during regular office visits. The participants are seeing physicians for a range of conditions, from urinary tract infections to hypertension and diabetes. Linda Franklin-Sanders, RN, BSN, a research nurse at MMA, works with every project patient. At enrollment she takes a preventive history based on recommendations of the US Preventive Services Task Force, which enables her to identify unmet preventive care needs.
For the physician reminder group, Franklin-Sanders places reminder information in patients’ medical records for physician review. “[After the initial assessment] I talk with the physician and inform him or her of any other things that may have come up in my interview that the physician would need to know,” she says.
For the people in the nurse-mediated group, Franklin-Sanders initiates procedures for taking care of unmet needs, including making appointments for services ranging from mammograms and colon cancer screening to flu shots. “The patients are very receptive,” she reports. “They are open to your suggestions and they will call you if they need something. They like the nurse-mediated role and they seem to think it is something that should stay. Even though we have nurses here in the clinic, to have personal one-on-one [care is appreciated]. Everyone likes to be shown a little extra attention.”
Each time a study participant returns for care, Franklin-Sanders updates the patient’s preventive needs and repeats the process of either providing the services directly or placing a physician reminder in the patient’s record. The medical records of all subjects are reviewed--at baseline, one year and two years--to identify how frequently preventive services are documented and to record demographic information and diagnoses.
It is challenging to work with patients with serious illnesses, says Franklin-Sanders. “They really need education and counseling to get them to see what it is they need to do [to manage] their condition and stay healthy. But [when you succeed, it is] very rewarding,” she adds.
At Mount Sinai School of Medicine in New York, the EXCEED theme is “Improving the Delivery of Effective Care to Minorities.” Projects assess the reasons for minority patients’ underuse of effective interventions for managing premature birth, breast cancer, stroke and hypertension. The study also evaluates ways to eliminate underuse.
The EXCEED researchers work in conjunction with Mount Sinai’s Center of Excellence in Partnerships for Community Outreach, Research on Health Disparities, and Training (EXPORT), which is funded by the National Center on Minority Health and Health Disparities. “There are known ethnic and racial disparities in health and in health care, and there are also known medical interventions that we know have been proven effective,” says Nina Bickell, MD, MPH, co-director of EXPORT.
Past research has shown there is a greater underuse of health care services in minority communities. “Our goal is to actually figure out what the causes of the under-use are and target specific strategies to those causes to reduce them,” Bickell explains. “[We hope to] reduce the disparity in underuse and thereby reduce subsequent poor health consequences of not getting treatment that has been proven effective. That is actually something we can work to effect a change in.”
Wanda Garcia, RN, BSN, is the nurse in Mount Sinai’s study “Improving Hypertension Control in East and Central Harlem.” East Harlem, often known as Spanish Harlem, has historically had a predominately Puerto Rican population, although there has been a recent large influx of Mexicans and Central Americans; Central Harlem has historically been an African-American community. Garcia works with six area health providers.
The study--a randomized controlled trial--is targeting problems that cause hypertensive patients to have poor control of their blood pressure. The research seeks to identify specific patient, provider and system problems, and then develop customized interventions to address them.
There are three participant groups in the study: usual care, blood pressure self-monitoring and nurse management. Patients who get usual care receive treatment from their regular clinicians. The research team provides blood pressure monitors to patients in the self-monitoring group.
Patients under Garcia’s care receive a blood pressure monitor and meet with her over the course of nine months. She makes initial home visits and teaches patient how to use the monitor. For the first two weeks of the study, patients in her group check in with her four times daily.
Garcia is directly involved in intervention. “I need to determine what I must do to get their blood pressure under control,” she says. “So, for example, if I see a patient for the first time and the blood pressure is not under control, I need to find out why. Is it non-compliance? Is it insurance issues or medication that needs to be titrated? Depending on the problem, then I have to intervene. Sometimes I have to contact the doctor.” If there are financial issues, Garcia helps connect the patient with a social worker or assistance program.
Over the nine months, Garcia has scheduled patient call dates. “In every follow-up phone call,” she says, “I discuss diet and exercise and lifestyle changes we are hoping they can institute to [make them] feel like they are more in control of the disease--as opposed to the disease being in control of them.”
Eventually the study will assess differences in blood pressure changes among the three study arms. It will also outline differences in quality of life, patient satisfaction, costs and cost-effectiveness.
As a bilingual Hispanic nurse, Garcia can easily communicate with patients who do not speak English. “Also, I know the culture because I am part of the culture,” she adds. “They feel they can relate to me. They can be more open and more willing to disclose the issues they are going through. In that way, I am better able to help them.”
Often Garcia has to factor in socioeconomic and lifestyle issues, such as poverty, smoking, drug abuse, alcohol and diet. “You go into the neighborhood and you are going to find all the fast food chains,” she notes. “All their lives they have been eating this type of food that they can financially afford. These things are all part of their lives. They have had a very rough life socially and financially.”
At the Medical University of South Carolina, “Understanding and Eliminating Health Disparities in Blacks” is the EXCEED theme. The research is examining strategies to address inequalities in health status between African Americans and whites, including those in rural areas, with specific clinical conditions that include HIV disease, cardiovascular disease and cancer.
Winnie Hennessy, RN, MSN, PhD(c), is a nurse specialist for palliative and supportive care working on “An Exploration of Racial Differences in End-of-Life Care Preferences Among Cancer and Congestive Heart Failure Patients.” One part of the study--the Team Planning and Care Education project--focuses on improving communication between patient and clinician and on respecting patients’ preferences in care planning. The project also explores and describes racial differences in needs, preferences and impact of the intervention.
“In the world of advanced illness, cultural perspective drives how family and patients will incorporate illness into their lives and how they will incorporate treatment,” Hennessy says. “These treatments need to fit what their vision is of health, getting well, sickness and how to overcome it--or in this case, where sickness cannot be overcome, [how to deal with that]. And if we don’t understand that or at least be sensitive to it, we as health care providers will not be able to help these people manage their illness, their dying and ultimately their death.”
In an ambulatory care, hospital-based oncology clinic, researchers are testing two interventions: a structured clinical needs assessment (CNA) form versus nurse counselor follow-up via telephone.
The CNA helps legitimize the discussion of psychosocial issues related to end-of-life care, Hennessy explains. It is a self-administered paper form, facilitated by the clinic nurse prior to the physician visit. This will then cue the physician to patient concerns. The nurse counseling calls allow time for problem solving, planning and referrals. Researchers are also in the early stages of developing a project to help cardiologists and physicians with their awareness of palliative care in congestive heart failure patients.
Overall, the nature of EXCEED projects shows the critical role nurses can play in improving the quality of care for patients in general, and the impact nurses of color can have on improving the quality of care for minority patients, says Robert Mayberry from Morehouse School of Medicine
“It is realization that is empirically based,” he emphasizes. “I think it is the wave of the future. As our health care delivery system continues to evolve, I think we will see more acts of participation [by] the nurse professional in these types of research activities and as part of the total quality improvement team.”