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
- 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
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
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.
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:
- Clinical decision support;
- Population health management;
- Process changes in addition to HIT;
- Quality measurements; and
- Health information exchange.
IHS has incorporated CKD-related information into the EHR. This includes the following measures.
- To identify and proactively manage populations at risk for and diagnosed with CKD.
- To monitor risk factors for CKD in diabetic patients.
- To provide best practices information.
- To analyze historical and current trends.
- To analyze the effects of new interventions.
- To provide on-line education and resources, including Podcasts.
- To communicate with providers on new efforts in the prevention and management of CKD.
Important Considerations Related to the EHR
- Meaningful use measures are currently determined for 2011/2012, but are under discussion for out years. Providers need to be included in these discussions.
- Providers must be very clear about what they need from the EHR (e.g., measures, reminders). Design of the end product is user driven. Vendors will tailor products to the needs of providers but need guidance on the design of the product. For example, currently EHRs have minimal, if any, support for nephrology. However, vendors have not been asked to include this information.
- EHRs must be programmable and modifiable. This allows providers to adapt them to their own needs. These "backdoor" modifications can help tailor the EHR to the setting. However, this requires clear requirements that can be included in data fields and data structures.
- EHRs must be modified to meet the population's needs. For example, IHS had to address the use of ceremonial tobacco. This use of tobacco does not necessarily indicate a need for tobacco cessation services but the EHR did not allow providers to indicate this type of use of tobacco. The system must be adaptable to the needs of the providers/patients.
- It is important to streamline the EHR to providers' needs and the information that must be available to share across providers. IHS has found that of the 200 fields in the pharmacy software application of the EHR, only 30 are filled on a regular basis.
- Patient education should be included in the EHR. Codes must be included so that providers can be reimbursed for educating patients. There are currently no standard education codes that have been endorsed by a standards development organization.
- Dr. Narva commented that a major challenge in CKD is surveillance. If better data were available in the EHR, this would support improvements in population-based care.
- Dr. McClellan provided his perspective on how to effectively incorporate EHRs. His suggestions are listed below.
Dr. McClellan acknowledged that there are other areas, such as HIV medicine, which can provide lessons learned. It is important to build on the previous lessons learned.
- Use an iterative process to incorporate provider, community, and population level surveillance.
- EHRs should lend themselves to graphic display.
- The ability to transport data and images is essential.
- All measures must be based on evidence.
- There must be measures to address medication errors.
- Dr. Haley commented that while incorporating the EHR is a challenging process, the provision of care on a daily basis in primary care settings is very complex. Given the complexity, the incorporation of EHRs will not on its own improve health outcomes. Among the barriers he identified is the need to be cautious in migrating to an electronic system. The new system will need to include prompts to ensure appropriate care but the inclusion of measures will be more difficult. Not everything that is necessary can be measured accurately.
- Dr. Tomasello stated that EHRs present a challenge in terms of patient education and getting paid for patient education. Time to educate patients about medication adherence and other medication-related issues must be integrated into the EHR.
- Dr. Vassalotti asked to what degree commercial vendors can be integrated with Federal systems, especially since much of the information collected is at the provider level. Dr. Cullen responded that customizing the EHR is an intensive process that must be tailored to the needs of the organization. With IHS, teams of three trainers go into facilities for three weeks. In addition, IHS offers providers access to all their clinical quality data.
II. Kidney Research National Dialog
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 http://krnd.ideascale.com.
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.
- Diabetes. In 2008, about 2.5 million U.S. Hispanics had diagnosed diabetes. On average, U.S. Hispanic adults are two times more likely to be diagnosed with diabetes than non-Hispanic white adults. Mexican Americans and Puerto Ricans have a rate similar to African Americans while Cubans have a much lower rate.
- End-Stage Renal Disease. In 2008, more than 15,000 Hispanics initiated treatment for ESRD and more than 80,000 were living on dialysis or with a transplant. Among the population with diabetes, Hispanics have 1.7 times the rate of diabetes-related kidney failure compared to non-Hispanic whites. Diabetes is the leading cause of ESRD, accounting for 60-67 percent of newly treated ESRD cases in 2008 among Hispanics in the U.S. and Puerto Rico. Hispanic men have a higher rate than women.
- Chronic Kidney Disease. Among Mexican Americans, 7.9 percent have CKD. While the prevalence of stage one to four CKD in Hispanics is 40 percent lower than whites, the prevalence of ESRD is 80 percent higher. This may suggest a rapid progression of kidney disease in Hispanics.
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.
IV. Hispanic Populations at Risk: Opportunities for NKDEP
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:
- Mexicans or Mexican-Americans;
- Puerto Ricans;
- Central or South Americans;
- Other Hispanics or Latinos.
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.
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.
- Communication Challenges. Given the diversity of Spanish regional idiomatic expressions and terms, communication efforts must be carefully tailored to the specific subpopulation. In addition to getting the language right, there are other considerations when developing communication strategies for the Hispanic/Latino community. Materials cannot be simply translated from English. They must reflect the culture, customs, and experiences of the targeted subpopulation. For example, people from tropical areas may have little experience with non-tropical foods—a consideration when trying to promote a healthy diet. Other differences across the population are degree of assimilation (e.g., length of time in the U.S., immigrant vs. born in the U.S.), socioeconomic status, and level of education.
- Common Elements across the Hispanic/Latino Population. While it is true that the population is very diverse, there are commonalities across Hispanics/Latinos. For example, trust and respect are extremely important. To work effectively in the community requires the creation of relationships and the building of trust. Family is very important in the Hispanic/Latino population and decisions are often made at the family, and not the individual, level. Due to the experience with unilaterally authoritative and hierarchical systems (political, social, etc.), paternalism plays a strong role and there may be a tendency to defer decision-making. Similarly, the extreme socioeconomic challenges faced by many Hispanics/Latinos, both in their country of origin and the U.S., has resulted in a degree of fatalism, paired with a focus on the present.
- Approaches to Formative Research. Community organizations engaged in health-related initiatives can be effective partners in collecting data on the demographics of a community or population, as well as access to and utilization of health services. Consulates can also help in providing data on a specific population as many immigrants communicate regularly with their consulates and the consulates conduct various outreach activities focusing on their citizens living abroad. It is also possible to partner with ongoing population studies. It is important to keep in mind how established the Hispanic/Latino community is in a geographic region and other considerations when conducting research. For example, long-established Hispanic/Latino populations in areas such as California and Texas may differ from newer communities, such as those in North Carolina.
- Successful Public Health Programs in Spanish-Speaking Communities. Although there are multiple publications on the need for health-related research and the barriers to health research and the implementation of health care strategies in Hispanic/Latino communities, there are not many publications demonstrating the effectiveness of specific strategies. Dr. Avilés-Santa identified four programs that offer insight into working with the Hispanic/Latino population.
- Aventuras para Niños. This program focuses on building parenting skills to address childhood obesity. It compared home visits with promotoras to interventions at school and in the community. At the 2-year follow up, significant improvements were observed and sustained in families who received the promotora visits and regular newsletters.
- Experiences with Diabetes and Hypertension in Boston. This study is assessing barriers to the management of chronic diseases. Participants identified nutrition, genetics, and environmental stress as primary contributors to diabetes and hypertension. Participants expressed an interest in learning creative ways to adopt a healthier diet and physical activities and wanted to involve their family members in prevention. There was also an interest in support groups and disease management.
- Hypertension Improvement Project (HIP). This behavioral intervention at a CHC in Durham, North Carolina utilizes promotoras to teach participants about weight loss, exercise, and healthy diets. The participants who completed the six-week study experienced lower blood pressure, weight loss, and increased physical activity. However, there was a high attrition rate among participants—of the 64 potential participants identified, only 17 completed the intervention. `This is an obstacle that needs to be considered and approached when implementing follow-up programs in Hispanic/Latino communities.
- Project Help Educate to Eliminate Diabetes (HEED). This study focuses on enhancing self-efficacy to make lifestyle changes through workshops over a 10-week period. The curriculum focuses on diet, exercise, and portion control. Participants reported that the messages were not culturally appropriate and did not reflect their daily reality.
- Potential Outreach Partners. Various partners include established community clinics, organizations with established health-related activities, doctors within the community, faith-based organizations, and the media (e.g., Dr. Elmer Huerta). An important consideration when working with the Hispanic/Latino population is how to effectively reach immigrant/migrant populations. Given the legal considerations for immigrant/migrant populations, it is important to work with an organization that is familiar with the unique issues facing this population.
- Dr. Ferris asked about the effectiveness of promotoras and whether evidence is available to support their use. Dr. Avilés-Santa stated that are a few articles on promotoras working within programs focusing on cardiovascular disease. Even though they have not been evaluated, there is a lot of interest in the model. An additional issue related to promotoras is formalizing the position (e.g., licensing, job description).
- Dr. Ferris asked about telenovelas as effective health promotion and prevention vehicles for the Hispanic/Latino community. Dr. Avilés-Santa said that there are no publications available on the effectiveness of telenovelas. Nevertheless, efforts must be made to develop partnerships with the media.
- Dr. Rosas asked if national organizations play a role in reaching the Hispanic/Latino community. Dr. Avilés-Santa stated that the National Alliance for Hispanic Health (NAHH) has been very involved in the Hispanic Community Health Study. Ms. Gaitán, a senior policy advisor with NAHH, stated that NAHH works with a network of community-based organizations on health promotion and education projects. NAHH develops culturally appropriate materials. Ms. Gaitán stated that in targeting the Hispanic/Latino population, materials must be developed in both Spanish and English given that by the third generation, English is the predominant language. She suggested that in targeting this population, NKDEP should work with existing programs, as there are many that are focusing on diabetes.
- Dr. McClellan asked about the acculturation of later generations of Hispanics/Latinos and whether messages targeting U.S. teenagers in general would be appropriate for younger Hispanics/Latinos born in this country. Ms. Gaitán said that it is necessary to use both languages and that many third generation Hispanics/Latinos still share the same cultural traits as more recent arrivals.
- Dr. McClellan stated that with African Americans, a common approach is to educate the children so that they can take messages home to the family. He asked if a similar approach could work with Hispanics/Latinos. Ms. Gaitán stated that this approach has been used with tobacco-related programs. Dr. Avilés-Santa stated that it is common in the Hispanic/Latino population for younger members of families to take their older relatives to medical appointments and to serve as interpreters. Although the latter is not ethically advisable, educating young adults to be effective deliverers of health messages to the rest of the family might be an important vehicle for educating some Hispanic/Latino adults and families.
V. Lessons Learned From NKDEP Community Health Center Chronic Kidney Disease Pilot
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.
- Data Collection. Changing data systems presented time and resource challenges for the study participants. A national electronic data system (with lab interface and registry-like functionality) could help to address this. In addition, the study required too many data points, which created a reporting burden. The CHCs used the data to evaluate the impact of their activities, which they found to be beneficial. However, they found it challenging to present the findings to providers—it was necessary to explain the data and provide action steps.
- Patient Education. Tools used during the study, such as the GFR Pad, were useful in educational efforts. The researchers also found that allied health professionals play an important role in patient education and making changes within the organization. The researchers also observed that providers need support with patient self-management.
- Initiating/Maintaining Study Activities. The researchers found that having a "kick off" presentation by a high-level NIH representative helped to gain provider buy-in and the CHCs participating in the study found that the opportunities to talk to and learn from their peers were very valuable. High staff turnover during the study presented a challenge across all the CHCs.
- Effective Interventions. The researchers identified several effective interventions. These included: prompts in the EHR; CKD-specific templates in the EHR, including recommended testing and treatment; standing orders; and lab slips to create order sets for CKD labs to help ensure that patients receive the necessary care. In addition, delegating tasks to others on the health care team and better communication across the team (e.g., integration of team huddle to review patient needs) were also identified. To address the data challenges, researchers suggested automated monthly reporting and the development of custom clinical reports. The researchers also suggested that self-management strategies be incorporated into patient education and that the NKDEP tear-off pad is a useful tool in promoting patient self-management.
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.
- Dr. McClellan asked for more details on provider resistance to the UACR. Dr. Narva stated that providers do not understand UACR (e.g., what to order) and do not understand how to interpret the results. The resistance comes mostly from physicians. Other providers seem more receptive. Dr. McClellan added that the recalcitrance demonstrates that provider education and training is still necessary and that there is a need for tools such as the CKD-specific templates. Dr. Narva added that patient education could also help to address the issue. Patients need to be educated to ask for the tests.
- Dr. Camp stated that the findings demonstrate the challenges of working in a primary care setting. There are many things that have to be accomplished during the appointment. Providers have to make decisions about what to include. She suggested that a carrot and stick approach, such as including the UACR as a reporting measure, could be an effective approach.
- Dr. Bullock stated that the type of test (e.g., immediate results) is important. Cost and staff time are also important factors. Dr. Narva said that the NKDEP Lab Working Group is working to standardize urine albumin determinations and reporting of results.
- Dr. Haley stated that there is a large difference across primary care practices, even those that use the same model, but that there are common issues such as time pressure, resource challenges, and resistance to change. He asked Ms. Goldstein if the results can be generalized across settings. Ms. Goldstein said that CHCs have a culture of improvement, which resulted in a willingness to make changes. Dr. Narva added that an advantage of working with CHCs is that they serve a high-risk population and have embraced quality improvement. Many have participated in quality improvement studies. The nature of kidney disease and how kidney function is assessed are part of the challenge. Dr. Haley added that a nested design of primary care practices working with nephrologists could be effective.
- Dr. McClellan commented that the findings indicated that at least 50 percent of patients are not being screened. He asked if there are data on why patients were not tested. Ms. Goldstein stated that these data were not collected. Dr. Camp added that there is a lack of transparency about how the data are collected from EHRs. There is not the ability to drill down to the patient level. Information systems would need to be better to track patients that are not tested.
- Dr. Haley commented that the Physician Consortium for Performance Improvement has developed a CKD measure.
- Dr. Vassalotti added that many practices are struggling with the EHR and meaningful use, and that this is their main focus at this time. The barriers are similar across many diseases. The availability of models and tools can prevent providers from having to reinvent the wheel.
VI. NKDEP: Year in Review
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
- Kidney Disease Education Kit. This six-lesson kit for patient educators is a joint project by NKDEP and IHS. It features materials from NKDEP, NIDDK, NIH, and CMS. Content includes the basics of kidney disease, disease management, disease progression, how to treat kidney failure, preparing for treatment, and living with kidney failure. Each lesson includes objectives, a suggested outline, "take away" resources for patients, additional clinical information for educators, and sample outcomes assessment questions. The education kit will be an online tool, which will allow users to customize the information for various populations. The kit will be available in 2011. Ms. Newman requested feedback from panel members.
- Dietitian Outreach. The goal of the project is to involve general practice dietitians in CKD education. Since May 2007, NKDEP has been collaborating with the American Dietetic Association (ADA). As part of the project, nutrition materials have been developed. These materials focus on the role of medical nutrition therapy (MNT) in CKD management. Included are both provider and patient materials. The materials are available online and NKDEP is also exploring producing hardcopy versions. A certificate program in CKD nutrition management is under development. The program will address key topics including burden of disease, identification and monitoring of CKD, how to slow progression, complications, key nutrients, and renal replacement therapy. The program is scheduled for release in May 2011 and ADA will promote the program to its members.
- Community Outreach. NKDEP partnered with the Hampton University Ministers' Conference to promote Kidney Sundays to over 6,000 African American ministers, choir leaders, and faith representatives. With the American Kidney Foundation, NKDEP promoted MIKE screenings at family reunions and other community events.
- Fistula Videos. Eight new fistula videos have been produced that model patient/provider dialogue. New videos have been produced in Spanish featuring CP member, Maria Ferris, and her brother.
- Materials Development. Various new materials have been developed including brochures focusing on the newly diagnosed, medication education, and urinalysis for children at risk. A nephrology referral form was created in response to requests from providers, which promotes improved communication between primary providers and nephrologists. It is based on an IHS form.
- Exhibits. Exhibiting at conferences provides an opportunity to distribute materials and learn how these materials are used in the field.
- Material Distribution. NKDEP continues to distribute materials to various organizations including Quality Improvement Organizations (QIO) and diabetes control and prevention programs.
- Social Media. NKDEP is exploring the use of new media and has a Facebook page.
- Translational Research. NKDEP is working to promote the adoption, maintenance, and sustainability of evidence-based intervention through Type 2 (T2) translational research. A workshop was held in October 2010 to identify possible T2 research questions for CKD and an RFA (http://grants.nih.gov/grants/guide/rfa-files/RFA-DK-10-011.html) has been released that emphasizes innovative approaches for settings serving high-risk individuals. Applications are due in February 2011.
- Urine Albumin Studies. An NKDEP-International Federation of Clinical Chemistry joint work group is working to standardize the urine albumin test including sample collection, measurement, and reporting.
- Facilitating Collaboration and Innovation. NKDEP will be exploring the development of an online workspace to share best practices and facilitate input on materials. Conversation map research is currently underway to determine what conversations are taking place about CKD and identify who are the most important influencers.
- Appropriate Blood Pressure Goal. NKDEP is exploring whether 130/80 is the most appropriate goal or whether a different message needs to be conveyed.
- Some panel members expressed concern about changing the blood pressure goal of 130/80. Any change should be based on evidence. There was a concern of sending mixed or complicated messages to patients. Dr. Camp expressed that clinicians already receive push back from patients and must convey a large amount of information to patients. It is important to have the correct message.
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 kidneyschool.org, 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
Dr. Narva thanked the panel members for their ongoing involvement in many NKDEP activities.
Page last updated: March 1, 2012