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Improving the understanding, detection, and management of kidney disease.

Coordinating Panel Meeting
December 7, 2010, Natcher Conference Center
Meeting Participants and Summary

National Kidney Disease Education Program (NKDEP)
National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health

NKDEP Coordinating Panel

  • Karen Basinger, MS, RD, LN
  • Henry Brehm
  • Ann Bullock, MD
  • Anne Camp, MD
  • Jeanne Charleston, BSN, RN
  • Susan Crowley, MD
  • Kristina Ernst, RN, CDE
  • Trina Frazier, MS
  • Frances Ferguson, MD
  • Maria E. de Ferris, MD, MPH, PhD
  • Richard Goldman, MD
  • William Haley, MD
  • Lois Hill, MS, RD, LD, CSR
  • Frederick Kaskel, MD, PhD
  • Daniel Larson, BS
  • Janice Lea, MD
  • Stephanie Mahooty, BSN, RN, CNN
  • William McClellan, MD, MPH
  • Sylvia E. Rosas, MD, MSCE
  • Cassie Rico, RD, MPH
  • Dori Schatell, MS
  • Marisa Soto-Rowen, PharmD, CDE (by phone)
  • Sarah Tomasello, PharmD, BCPS
  • Joseph Vassalotti, MD, FASN


  • Andrew Narva, MD, FACP
  • Eileen Newman, MS, RD
  • Paul Eggers, PhD
  • Gregory Germino, MD
  • David Miller, PhD
  • Jody Nurik
  • Robert Star, MD


  • Michael Briggs
  • Cara Crosby
  • Mariana Eberle-Blaylock
  • Karen Goldstein, MPH
  • Julio Valeriano
  • Anna Zawislanski, MPH

Additional Attendees

  • Larissa Avilés-Santa, MD, MPH, FACP, FACE
  • Theresa Cullen, MD, MS
  • Marcela Gaitán, MPH, MA
  • Dan Garver, PhD
  • Nilka Rios Burrows, MT, MPH (by phone)
  • Jennie Larkin, MD
  • Jennifer Sizemore, ELS
  • Barbara Wells, PhD (by phone)

Welcome and Introductions

Andrew Narva

Dr. Narva welcomed participants to the NKDEP Coordinating Panel meeting. He stressed that the members' expertise was extremely valuable to NKDEP over the past year and that members have been very generous with their time.

The meeting focused on two main topics: 1) health information technology (HIT), and 2) the impact of chronic kidney disease (CKD) in the Hispanic/Latino population.

HIT is an important area of emphasis for NKDEP. NKDEP found in the Community Health Center/CKD pilot project that data collection and analysis was hampered by limitations of current electronic health records (EHRs). Promoting compatibility across EHRs could address this challenge.

The focus on the Hispanic/Latino population is new for NKDEP. In the past, much of NKDEP's focus has been on African Americans but the Hispanic/Latino population that is growing and at high risk of CKD. NKDEP must develop a more coherent and intentional approach to this population.

I. Health Information and Technology: Opportunities for CKD

Terry Cullen

In introducing Dr. Cullen, Dr. Narva related how, during the Community Health Center (CHC)-CKD Pilot, four of the five participating CHCs implemented EHRs. It was difficult to collect data on CKD-related measures due to the lack of functionality across EHRs. Based on this experience, NKDEP is exploring the identification of a standard set of data points for EHRs that could support quality improvement efforts in CKD.

Dr. Cullen emphasized that, as the Office of the National Coordinator for Health Information Technology (ONC) and CMS facilitate the implementation of EHRs and move providers toward meaningful use, there are significant opportunities for creating measures related to CKD. ONC is supporting a range of activities designed to move providers toward the use of EHRs. For example, ONC is working with providers and vendors to identify measures for meaningful use and include these in EHRs. As part of this effort, they are working to develop standard terminology for results. Initiatives such as the Beacon Community Program support communities in strengthening their HIT infrastructure and exchange capabilities to improve care coordination, increase the quality of care, and slow the growth of health care spending. The HIT Extension Program provides technical assistance to providers in regions across the U.S. ONC is working in conjunction with CMS as well as other Federal agencies to support implementation.

ONC Activities
  • Certification (required for meaningful use)
  • Standards for Meaningful Use
  • Security and Privacy in Health Information Exchange
  • Beacon Community Program
  • Community College Consortia to Educate Health Information Technology Professionals Program
  • HIT Extension Program (RECs)
  • Nationwide Health Information Network
  • Federal Health Architecture

The Federal government's activities support the objectives of Healthy People 2020, which place an emphasis on patient-centered care. The objectives call for using social networks for patient support, personalized health information, meaningful HIT, and increasing Internet and mobile access. In addition, HIT can play an important role in capturing patient goals. For example, goals can be recorded and tracked in EHRs.

HHS has set standards in terms of how providers should utilize EHRs and these are referred to as "meaningful use." There are six measures (three core and three alternate) for eligible providers, as well as additional non-core measures. Hospitals have separate measures. One limitation of meaningful use is that it is based on the patient, as opposed to group practice. Because a team cannot "claim" a patient; the current incentive program does not accommodate the medical home model that is based upon group practices. Other considerations include interoperability and the storage of data (e.g., accessibility of data warehouse). Organizations, such as the National Quality Forum, are open to collaborating on the identification of measures.

As a closed system, the Indian Health Service (IHS) has been active in implementing HIT across its 400 sites in 35 states. The Resource and Patient Management System (RPMS) includes EHRs with computer-based provider order entry and e-prescribing. The system reflects four perspectives: provider, patient, community, and population. While the system is focused on the provider, it can serve as a tool to help patients manage their care. It can also be used to track care at the community and population level. In addition, IHS uses other electronic tools. Icare is a population management tool designed for assessment. The Care Management Event Tracking system allows for the longitudinal tracking of the delivery of care. The Patient Summary allows for the tracking of patients across providers.

The EHR can be an important quality improvement tool and can actually help providers move beyond quality improvement to health equity—all patients receiving optimal care. EHRs can be designed to offer the following functions:

IHS has incorporated CKD-related information into the EHR. This includes the following measures.

EHRs: One Provider's Perspective
Through her work with the IHS, Dr. Cullen has used the EHR. While EHRs exist primarily for billing purposes, they can have many other benefits, especially in the area of improving patient care, conducting patient education, and tracking both individual outcomes and population health. In addition, since the provider does not have to deal with billing issues, there is more time to focus on patient care.
IHS uses a health data repository at the point of care, as well as exporting data to a data warehouse. This allows providers to run local queries and track outcomes at the local population level. For example, IHS providers were able to track cases of H1N1 across the system in 2009. Dr. Cullen noted that this feature is extremely useful to providers.

Important Considerations Related to the EHR


II. Kidney Research National Dialog

Robert Star

Dr. Star introduced the Kidney Research National Dialog (KRND). The KRND is an interactive web-based dialogue to address the significant problem of kidney disease through the identification of critically important questions or objectives and the research strategies to address them. The results will be used to prepare a "Blueprint for Kidney Research" that clearly articulates future opportunities to be implemented by the entire research community. KRND can be found at

KRND will be used beyond the development of the Blueprint. NIDDK envisions it as a forum for cross-disciplinary discussions and collaborations. It will serve as a tool for the entire community. There are currently 400 users on the site.

Dr. Star stated that an NKDEP discussion group could be added.

III. Kidney Disease and Diabetes among U.S. Hispanics

Nilka Ríos Burrows, MPH

Ms. Ríos Burrows presented data on the Hispanic population in the U.S. and the impact of diabetes, end-stage renal disease (ESRD), and CKD in this population. Most Hispanics (58%) have their origins in Mexico and are concentrated in the Western region of the nation. However, it is important to note that the Hispanic population in the U.S. is very heterogeneous, made up of people from the many countries in Central and South America and the Caribbean also. While they are concentrated in some areas of the United States, they are geographically dispersed across the country.

Given that Hispanics are disproportionately affected by diabetes and ESRD, Ms. Ríos Burrows recommended that interventions are needed to prevent or delay kidney disease in this population.

Hispanics in the U.S.
Mexico 58%
Other Hispanic 28%
Puerto Rico 10%
Cuba 4%
West 43%
South 33%
Norteast 15%
Midwest 9%

IV. Hispanic Populations at Risk: Opportunities for NKDEP

Larissa Avilés-Santa

Dr. Avilés-Santa provided an overview of the Hispanic/Latino population in the U.S. While the Hispanic/Latino population is often considered to be homogeneous, it is actually very diverse. This misconception about commonalities across the Hispanic/Latino population leads to many incorrect assumptions. For example, Spanish is often considered to be the common language but in reality, people from Latin America speak Spanish, as well as indigenous languages and other languages such as Portuguese and English. People from Latin America are often assumed to be from the tropics but the region has mountainous and desert regions as well. People from the various regions reflect diverse customs and cultures. Given the diversity of the Hispanic/Latino population, communication efforts must be tailored to meet the unique needs of the various subpopulations.

Hispanic Community Health Study
The Hispanic Community Health Study—Study of Latinos (SOL) funds four sites and an evaluation center to conduct the largest long-term epidemiological study of health and disease in Latin American populations living in the U.S. As many as 16,000 participants of Hispanic/Latino origin — 4,000 at each of the four sites — will undergo a series of physical examinations and interviews to help identify the prevalence of and risk factors for a wide variety of diseases, disorders, and conditions. Participants will be recruited from the local communities and will include individuals who self-identify with any of the following Hispanic/Latino groups:

Participants in the study range in age from 18 to 74 years and will be followed over time for occurrence of disease. The study is addressing a wide variety of conditions, including heart disease, stroke, asthma, chronic obstructive pulmonary disease, sleep disorders, dental disease, hearing impairment, diabetes, kidney and liver disease, and cognitive impairment. In addition, the study will assess such risk factors as diet, physical activity, obesity, smoking, blood pressure, blood lipids, acculturation, social and economic disparity, psychosocial factors, occupation, health care access, the environment, and medication and supplement use.

Recruitment for the study started in February 2008. As of November 30, 2010, over 12,500 participants had been recruited. Approximately 43 percent of the participants are Mexican in origin, followed by 18 percent Puerto Rican, 17 percent Central and South American, 11 percent Cuban, 8 percent Dominican, and 3 percent other Hispanic/Latinos.

The study will maintain annual contact with participants to record changes in health status and health-related events. This annual follow up started in March 2009.

An important aspect of the study is the involvement of the target population in the planning process and the development of materials. For example, the development of the recruitment materials included significant feedback from the community, which is reflected in the final design.

While the study is still in its early stages, Dr. Avilés-Santa identified some early lessons learned. A translation committee is responsible for leading the translation process. The study is drawing on existing questionnaires from other studies. In its work, the translation committee seeks to 1) recognize regional terms and idioms, 2) use region-neutral terminology, and 3) simplify medical jargon. Focus groups are also used to ensure that the materials are appropriate. Interviewers are provided clear instructions on how to administer the questionnaires. This instruction focuses on addressing diverse educational levels, cultural proficiency, and reading non-verbal cues.

Participating NIH Agencies
  • National Heart, Lung, and Blood Institute (NHLBI)
  • National Institute of Deafness and Other Communication Disorders (NIDCD)
  • National Institute of Dental and Craniofacial Research (NIDCR)
  • National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
  • National Institute of Neurological Disorders and Stroke (NINDS)
  • National Institute on Minority Health and Health Disparities (NCMHD)
  • National Institutes of Health-Office of Dietary Supplements (NIH-ODS)
Study Sites
  • Bronx, NY (Albert Einstein College of Medicine of Yeshiva University)
  • Chicago, IL (Northwestern University)
  • Miami, FL (University of Miami)
  • San Diego, CA (San Diego State University)
  • Data Coordinating Center: University of North Carolina (UNC), Chapel Hill
Primary Goals of the Study
  • To identify the prevalence of cardiovascular and pulmonary disease and other conditions in the U.S. Hispanic/Latino groups of diverse backgrounds.
  • To identify the prevalence of factors that protect from or increase the risk for cardiovascular and pulmonary disease and other conditions in diverse U.S. Hispanic groups.
  • To identify all-cause mortality, and the incidence of fatal and non-fatal cardiovascular and pulmonary events in diverse U.S. Hispanic/Latino groups.

Strategies for Working with the Hispanic/Latino Community
Dr. Avilés-Santa provided insight on how to effectively address the needs of the Hispanic/Latino community.

Elements of Success
  • Clear definition of success before planning the intervention
  • Evidence-based strategies
  • Clear and appropriate communication
  • Realistic goals
  • Health literacy
  • Interaction with a health professional
  • Support groups when appropriate


V. Lessons Learned From NKDEP Community Health Center Chronic Kidney Disease Pilot

Karen Goldstein

Ms. Goldstein provided an update on the NKDEP CHC-CKD Pilot project. Six CHCs participated in the 2-year project. CHCs were a logical choice for the pilot study as they have a culture of quality improvement and are motivated to improve patient care.

As part of the study, the CHCs implemented activities across the Chronic Care Model. These included: changes to EHRs/registries, including CKD reports and templates; standing orders and lab slips for CKD; CME/trainings for providers and center staff; CKD education; group visits for CKD; and community screening events. The participating CHCs provided monthly data reports, attended regular meetings related to the study, and received technical support from NKDEP.

The collection of data across the five sites presented some challenges. There was great variability in the quantity and quality of the data provided. Ms. Goldstein provided some of the findings of the study. For example, over the course of 2009, the number of patients with an estimated GFR in the past year increased from 59 percent to 69 percent. African American patients were less likely to have an estimated GFR in the past year, although the rate did improve by over 15 percent over the course of the study. There was little change in the rate of UACR screening over the course of the year, which the researchers attributed to both provider resistance and the difficulty of getting a urine sample. There was a six (6) percent improvement in the number of patients with their blood pressure controlled to < 130/80. This was less than expected and the study participants formed a work group to explore interventions to address this.

Based on the findings, the researchers identified lessons learned in various areas.

In the coming year, the researchers will be developing a paper discussing the key lessons learned and sharing the lessons and materials developed as part of the study with other CHCs. Ms. Goldstein stated that possible dissemination strategies include a toolkit for CHC settings, framing the activities within diabetes care, working with primary care associations, and linking activities with diabetes prevention and control programs, associations, and clinicians, as well as providers working with underserved communities. Ms. Goldstein asked panel members to also provide their suggestions on how the findings could be disseminated.

In addition, the researchers used the findings to develop suggestions for improving CKD care in the primary care setting. A possible approach is to create an "early CKD" label as providers and patients often associate CKD with nephrologists. Other approaches include adding a CKD measure to HEDIS or UDS, exploring ways to better utilize the EHR, working with payers to include items in the quality report card, and creating a peer review CME package.

CHC-CKD Goals and Objectives
To improve detection and management of CKD in community health centers by identifying:
  • Performance measures health centers could adopt for CKD screening and management
  • Materials/tools/training health centers need to support implementation of system-level changes
  • Effective practices for dissemination


VI. NKDEP: Year in Review

Eileen Newman
Andrew Narva

Ms. Newman provided a review of NKDEP's activities over the past year. NKDEP's activities are designed to reflect the Chronic Care Model. During the past year, NKDEP has launched new initiatives and developed new materials.

New and Ongoing Initiatives

New Directions

VII. Coordinating Panel Member Updates

Kristina Ernst reported that the U.S. Centers for Disease Control and Prevention has developed a new, web-based kidney disease surveillance system, which will be searchable using various queries. There is currently an RFP for the Diabetes Prevention and Control Program, which will fund five awards. The focus is the education of health care providers and the public on CKD.

Dori Schatell reported that the Medical Education Institute has re-launched, which is the most-used CKD resource in the world. The modules, which are at the sixth grade reading level, can be used live or downloaded. An audio version is also available and a Spanish version will be released in the coming year. A book, Help, I Need Dialysis, is under development and will be available in 2011. It targets patients with stage 4 and 5 CKD.

Trina Frazier reported that the American Kidney Fund (AKF) has developed the Learn it! Check it! Live it! Toolkit, which can help adults at risk for kidney disease, diabetes, or high blood pressure to understand their risk factors, screening tests, and the importance of a healthy lifestyle in preventing kidney disease. The materials in the toolkit can be used either in a group setting or for one-on-one counseling. AKF has started using point-of-contact determinations (creatinine and eGFR) at outreach events. This has allowed AKF to improve customer service and to cut down on the lag time between screening and the delivery of results. Materials from NKDEP have been very useful at ACK events.

VIII. Closing Remarks

Andrew Narva

Dr. Narva thanked the panel members for their ongoing involvement in many NKDEP activities.

Page last updated: March 1, 2012