|NKDEP Coordinating Panel
- Amy Barton Pai, PharmD, BCPS, FASN, FCCP
- Elcedo Bradley, RN, MEd
- Henry Brehm
- Ann Bullock, MD
- Anne Camp, MD
- Jeanne Charleston, BSN, RN
- Susan Crowley, MD
- Trina Frazier, MS
- Richard Goldman, MD
- Mary Jo Goolsby, EdD, MSN, NP-C, CAE, FAAN
- William Haley, MD
- Derrick Latos, MD, MACP
- Stephanie Mahooty, BSN, RN, CNN
- Bennie Marshall, RN, EdD
- Sarah Mott. MS, RD
- Cassie Rico, RD, MPH
- Sylvia E. Rosas, MD, MSCE
- Dori Schatell, MS
- Kimberly Smith, MD, MS
- Julie Wright-Nunes, MD MPH
- Bessie Young, MD, MPH
- Andrew Narva, MD, FACP
- Eileen Newman, MS, RD
- Tamara Bavendam, MD, MS
- Paul Eggers, PhD
- Joanne Gallivan, MS, RD
- Kathy Kranzfelder, MA
- Robert Star, MD
NKDEP Program Staff
- Tiana Allen
- Michael Briggs
- Cara Crosby
- Mac Cullen
- Taryn Dorsey
- Mariana Eberle-Blaylock
- Raquel Garcia-Pertusa
- Jewel Jones
- Jenna Norton
- Anna Zawislanski, MPH
Panelists and Presenters
- Greg Miller, PhD (by phone)
- Uptal Patel, MD (by phone)
- Delphine Tuot, MDCM, MAS
- Susan McDonough, MS, RD
- Ravee Kurian
- Earnestine Walker
I. Welcome and Introductions
The focus of the meeting is to present the National Kidney Disease Education Program’s (NKDEP) efforts to reach high-risk communities and to engage partner organizations in these efforts in meaningful ways. Topics to be addressed include community engagement, evaluation, and health information technology, all of which have been addressed at previous meetings.
NKDEP relies on the support of the Coordinating Panel members throughout the year to augment the efforts of NKDEP staff. In addition to Dr. Narva and Eileen Newman, who are the only Federal employees, NKDEP staff is made up of consultants from Ogilvy Public Relations. This arrangement allows NKDEP to respond quickly and creatively to issues and challenges and provides access to a wide range of expertise.
Dr. Narva congratulated Eileen Newman, who received an NIH Director’s Award for establishing an innovative collaboration with the Academy of Nutrition and Dietetics to train and certify general practice dietitians in chronic kidney disease.
New members on the Coordinating Panel were introduced.
- Betty Garrison, Health Resources and Services Administration (and a kidney patient)
- Sarah Mott, MS, RD, Academy of Nutrition and Dietetics
- Cassie Rico, RD, MPH, American Diabetes Association
II. Engaging Communities
NKDEP Mobilizes African Americans for Kidney Sundays
NKDEP’s Kidney Connection campaign encourages African American communities to “make the kidney connection” between diabetes, high blood pressure, and kidney disease; and get tested for kidney disease. It is designed to leverage the influence of churches, partner organizations, and traditional and social media to encourage African Americans to understand their risk factors for kidney disease and to get tested if they are at risk. The approach emphasizes that the messengers are as important as the message and seeks to empower key messengers to disseminate information.
The first step in developing the Kidney Sunday program was formative research, which consisted of 14 conversations held in various locations around the country. Participants represented churches of various sizes and served in a variety of positions (e.g., pastor, support staff, etc.). The research indicated that health information is welcome but that it must be relevant to the members and delivered in a manner that is coordinated with the church activities. The approach needs to be flexible enough to accommodate the diversity of the target audience. In addition, the approach must be compatible with the churches own community outreach efforts.
Culturally-relevant Messengers are Key
- Faith leaders
- Community organization leaders
- Leverage influencers and real people
- Distribute materials through trusted resources
- Engage media, especially radio
- Launch social media
Continuous Commitment and Engagement
- Long-term engagement for effective and measurable change
Cost was also a factor in the design of the program. The research indicated that churches were unlikely to pay for materials. However, materials need to be attractive and engaging. To address this concern, materials were made available online and designed to be easily downloadable and copied so they can be shared.
Based on the research, the Kidney Sundays Toolkit was developed. The Toolkit includes:
- DVD, featuring kidney health champions and real patients
- Talking points to lead conversations about kidney disease
- Brochures for congregation members
- Resources and information
- Fact sheets.
The Toolkit includes a variety of interventions that can be used individually or together. In addition there is an emphasis on social media with information on how churches can disseminate information via their own social media platforms.
To promote Kidney Sunday in 2012, NKDEP partnered with three organizations. NKDEP provided educational materials, overall project oversight and coordination, and media relations support.
- The American Diabetes Association (ADA): identified key faith organizations in 13 media markets.
- Chi Eta Phi (CEP) (national nursing sorority): provided nurses for community engagement and blood pressure screenings.
- National Coalition of Pastors’ Spouses: provided national exposure through its network of more than 2,000 faith partners and leaders.
- Baltimore, MD
- Charlotte, NC
- Cleveland, OH
- Dallas, TX
- Hampton Roads, VA
- Houston, TX
- Indianapolis, IN
- Los Angeles, CA
- Memphis, TN
- Philadelphia, PA
- Raleigh/Durham, NC
- St. Louis, MO
- Washington, DC Metro Area
Baltimore provides an example of the scope of the event. ADA identified churches that were targeted by CEP nurses, who led education sessions and provided blood pressure screenings. Churches included:
- Empowerment Temple (4,000 members, 3 services);
- Morning Star Baptist Church (3,500 members);
- Central Church of Christ (200 members);
- St. Bernardine’s Catholic Church (600 members);
- Koinonia Baptist Church (200 members); and
- Zeta Center for Healthy and Active Living (200 members).
More than 2,000 kidney health education materials were distributed at the six churches.
- More than 350 African American congregations across the nation received kidney health information, emphasizing its connection to diabetes and high blood pressure.
- CEP nurses conducted 1,522 blood pressure screenings at 39 faith organizations in 15 cities.
- Reached more than 280,000 individuals through church outreach.
- Distributed more than 46,930 materials (including Toolkit, brochures, and information cards).
- Conducted radio media tour with Dr. Griffin Rodgers, NIDDK Director.
- Tom Joyner Morning Show
- Pennsylvania, Dakotas state radio networks
- Dallas, Atlanta, Charlotte talk and gospel stations
- Coordinated gospel radio interviews with Vivian Berryhill, NCPS Director.
- Developed and placed three articles online with BlackDoctor.org, Urban House Call, and Journey to Wellness.
The online/social media outreach was especially successful.
- Blackdoctor.org Q&A on Facebook garnered 24 kidney health-specific questions.
- Articles in Blackdoctor.org eNewsletter reached 250,000 subscribers.
- Twitter exposure and promotion reached more than 7,000 followers.
- Four articles were posted on website with more than 1.4 million monthly visitors.
|NKDEP partners with the American Kidney Fund (AKF) on Family Health History Month, which is designed to encourage individuals to speak with their loved ones about their risk of kidney disease. AKF sent out a co-branded email blast to 4,200 renal professionals to share with their patients and their families. Of the recipients, 15.8 percent opened the email and 12.8 percent clicked through to one or more of the embedded links within the email |
- Meaningful engagement is not driven by numbers. The focus should be on measureable outcomes and whether the approach is replicable.
- Identify clear benefits and objectives for each partner.
- Each market and church has unique needs. A flexible approach is important.
Work is already underway to plan for Kidney Sunday 2013:
- Including NIDDK and ADA materials for mass distribution;
- Stronger messaging to further address diabetes as a risk factor;
- Broader media outreach, including mainstream outlets;
- Securing stories from events (i.e.; hear from participants and capture their stories); and
- Increasing social media engagement.
Representatives of Kidney Sunday partner organizations discussed their involvement in the program.
Dr. Marshall is the Chair of the Department of Nursing and Allied Health at Norfolk State University. The Department has a program, which focuses on nurses providing educational interventions in churches. Dr. Marshall is also a member of CEP, so she was well positioned to support the Kidney Sunday program.
In the past, Dr. Marshall has used NKDEP materials in outreach activities. In particular, the community outreach video, which was filmed at her church and features members of the health ministry she leads, has been an effective tool. The short clips fit the needs of churches to convey health messages. In the video, the information is presented by a pastor, a trusted messenger with this audience. At her church, blood pressure screenings are held every third Sunday of the month. Patients with kidney disease are also included in outreach efforts.
Working with NKDEP on the Kidney Sunday program helped CEP re-energize its membership. The program provided an opportunity for the organization to broaden its scope. Programs were already in place addressing obesity and stroke. Kidney Sunday allowed nurses to focus on the common elements, such as the dietary aspect. The nurses volunteer their time for these activities and often they will tailor activities to match their own professional interests (e.g., dietary interventions). Ms. Bradley emphasized the importance of including partner organizations in the planning of an event, and not as an afterthought.
Kidney Sunday provided ADA an opportunity to engage with churches on a long-term basis. While the ADA has a broader approach to engaging the African American community, churches are critical to this approach—90 percent of their reach is through faith-based initiatives. ADA conducted follow-up activities following Kidney Sunday that built on the efforts.
- Dr. Latos asked if Kidney Sunday activities are linked to World Kidney Day. Ms. Allen responded that the online activities on BlackDoctor.org took place on World Kidney Day. An NIDDK Press Statement from NIDDK Director, Dr. Griffin Rodgers, is released every year in connection with World Kidney Day. Dr. Narva emphasized the importance of Rodgers’ involvement in the effort. Dr. Narva stated that acute kidney injury is the focus of the 2013 observance.
- Dr. Latos asked if there are efforts underway to access smaller communities. Ms. Allen responded that the program is working with CEP to recruit more CEP chapters, which are in communities both large and small across the country.
- Ms. Charleston asked about the need to address people outside the church. Church membership is predominantly female so strategies are necessary to reach men, such as programs focusing on barber shops. Ms. Allen responded that there are opportunities to reach men with the faith-based approach (e.g., men’s ministries) and that some of the materials used for Kidney Sunday feature men. However, additional approaches need to be explored. Ms. Newman added that NKDEP has been exploring the barber shop/beauty shop outreach model. Ms. Bradley also added that CEP has male members who conduct community outreach activities and also serve as role models in their communities.
- Dr. Goldman asked if there was a methodology in place to assess the impact of the intervention. Dr. Narva responded that it is hard to assess impact, especially in terms of detection of the kidney disease. Dr. Marshall added that in their outreach efforts they do track results and try to follow-up.
- Dr. Crowley suggested that this is a very good model for partnering. For VA, partners could be the American Legion or Veterans of Foreign Wars. The intervention could be re-packaged for senior organizations such as AARP.
Educating Hispanics on Kidney Disease
In the past year, NKDEP has been conducting extensive research to determine the availability of information related to kidney disease that targets the U.S. Hispanic community. This research has focused on online resources (e.g., government and other websites), social media, and Spanish-language media outlets. In addition, interviews were conducted with health professionals and promotores (community health educators).
- No comprehensive campaign on kidney disease targeting U.S. Hispanics.
- Health department websites typically do not offer information about kidney disease (in English and Spanish).
- A limited number of Spanish-language media outlets offer U.S. Hispanics information about kidney disease.
- The majority of organizations do not offer social media tools in Spanish.
- Promotores programs are highly successful among low-socioeconomic Hispanic communities.
Based on the research, NKDEP developed an initiative targeting the U.S. Hispanic community. The initiative is not an adaptation of educational efforts targeting other communities. It takes an original approach specifically designed to address the characteristics and the informational needs of the community. It was developed by Spanish speakers who belong to the target audience.
The theme of the initiative is “Riñones, Tesoros. Cuídalos,” which means “Kidneys, Treasures. Take Care of Them.” It was tested with kidney patients, health professionals, and promotores. According to the testing, the theme is simple, understandable, and evokes an emotional response.
The initiative includes multiple components. These are:
- Materials (online and print) development and dissemination;
- Community outreach via promotores;
- National and local partnerships; and
- Media relations.
The materials are not simply translations of materials targeting other audiences. Instead, they are culturally adapted to the audience. This takes into account cultural characteristics of the target audience, such as dietary preferences. In addition, efforts are made to address the linguistic characteristics of different subpopulations within the U.S. Hispanic community. Materials are reviewed by individuals from three different countries to ensure that “universal” Spanish is used. The materials are also reviewed by Spanish speaking clinicians (e.g., nephrologist, nurse, dietitian) and patients.
The materials have been well received by the target audience. In addition, the brochure “La Enfermedad de los Riñones: ¿Qué significa para mí?” about the basics of CKD received a National Health Information Award (Silver). Under development are additional brochures addressing the link between kidney disease and high blood pressure, kidney disease in children, and CKD and medicines.
In addition to the print materials, a Spanish-language website has been added to the NKDEP website. The website targets the general population and patients. Ongoing evaluation activities were incorporated into the development of the website to ensure that it is user friendly (e.g., resources are easy to access) and effective in communicating information to the target audience. For example, Dr. Narva’s photo is included on the website since research indicates that the target audience is more receptive to information that is identified with an individual.
An educational module for use by promotores is under development. The module will include a discussion guide and a flip chart for use in educational classes to the target audience. It will be developed in both Spanish and English, allowing use with other audiences beyond the Hispanic community. The module will be pilot tested in New York City and Los Angeles.
National and Local Partnership
Partners have played an important role in the development of messages and the testing of materials.
NKDEP conducted a media campaign to promote the new Spanish-language website. Several national Hispanic media outlets were targeted and Drs. Maria Ferris, Sylvia Rosas and Miguel Vazquez served as Spanish-language spokespeople for NKDEP. Dr. Rosas conducted a five-minute interview on CNN.
The campaign resulted in a total of 35,674,756 impressions to date. Messages were also disseminated via social media by the various outlets.
- CNN en Español (television segment)
- Univisión.com (web article)
- HuffPost Voces (web article)
- Agencia EFE (wire service)
- CNN en Español Radio (radio)
- AARP en Español (radio)
The media placements increased traffic to the NKDEP website. For example, on the day Dr. Rosas’ interview aired on CNN the NKDEP website saw a 125 percent increase in traffic compared to the same day of the previous week. These visitors viewed 8.4 percent more pages during their visit and remained on the site 12.7 percent longer than their counterparts from a week before.
Following the posting of an article on HuffPost Voces, traffic to the Spanish-language Resources page, which was linked in the article, was three times higher than the same day of the previous week and nearly twice the daily average for that page. An EFE News article increased traffic to the Spanish-language home page, which was linked in the article, by 88 percent over the same day of the previous week and 36 percent higher than the daily average for that page.
The initiative will be expanded in the coming year.
- Finalize the promotores training module, conduct trainings with selected promotores groups, and evaluate the program.
- Collaborate with current partners and identify new ones.
- Continue to adapt selected communications materials to Spanish.
Members of the Coordinating Panel discussed their involvement with the initiative.
Dr. Rosas received media training prior to the interview and participated in practice interviews. In addition to the CNN interview, Dr. Rosas conducted a one-hour radio show.
- Ms. Schatell commented that the NKDEP Spanish-language website is the top response for searches conducted on Google for kidney-related information in Spanish. She added that all of the Kidney School materials are available in Spanish.
- Dr. Latos asked if the End Stage Renal Disease (ESRD) Networks have been provided information on the initiative and the availability of materials in Spanish. Networks are required to provide information to new patients. He encouraged NKDEP to make direct contact with each ESRD Network to inform it about the initiative.
- Dr. Goldman commented that the Medical Education Institute developed a Spanish-language video for ESRD Network 15 (Southwestern states) that discusses dietary issues for people on dialysis. Ms. Schatell added that there are additional Spanish-language videos for patients on dialysis (addressing fistulas vs. graphs, fluid management, treatment options, and frequency of dialysis).
- Dr. Narva stated that the promotores program focuses on early stage kidney disease. The materials developed for promotores can be used by other potential educators such as nursing assistants and aides. These clinicians often have more time for educational activities in their interactions with patients.
- Dr. Wright-Nunes asked if the promotores model is a one-time intervention or if there will be ongoing engagement with the target audience. Ms. Newman stated that the module is designed to be a one-time educational intervention. Dr. Narva added that some of the R34 grants that NIDDK is funding focus on the use of patient navigators for people with CKD. Curricula are being developed by these grantees, which could be adapted for various audiences.
- Dr. Wright-Nunes suggested adding a component that addresses shared decision making. Dr. Narva added that Dr. Ebony Boulware at Johns Hopkins is developing materials in this area that NKDEP hopes to use in the future.
III. Evaluation of CKD Educational Materials
The evaluation of CKD educational materials is part of a larger study funded by NIDDK, which includes both a provider and patient intervention. The provider intervention uses the electronic health record to inform primary care providers which of their patients have CKD. The patient intervention focuses on self management. Patients received an automated phone call each week featuring vignettes on how to manage their condition. Health coaching and educational materials are available to patients.
Patient awareness of chronic disease status is necessary for the adoption of risk-reduction behaviors that can ultimately lead to improved health. This has been demonstrated among patients with other diseases such as diabetes and congestive heart failure. However, individual awareness of CKD is low, even among patients who are seeing a nephrologist.
Patient education, including materials, can play a role in increasing knowledge about CKD and the adoption of risk-reduction materials. Barriers to effective communication about CKD include:
- Ineffective communication on the part of providers;
- Patient denial and mistrust of information from providers; and
- Poor readability of web-based patient educational materials (PEMs).
To address these barriers, Dr. Tuot and her team conducted a study to explore the suitability and readability of common written PEMs on CKD. The goal of the study was to identify the most suitable and readable written PEMs.
- Basics of CKD
- Risk factors for CKD development
- Risk factors for CKD progression
- Complications of CKD
- Self-management strategies to improve health
To be included in the study, materials had to be in English and available in a hardcopy or a downloadable format. The PEMs were divided into sections based on content area in order to determine if they might be more useful in a particular clinical setting.
The Suitability Assessment of Materials (SAM) included 28 items in four domains:
- Message content;
- Text appearance/typography;
- Visuals/graphics; and
- Layout and design.
Seventy-one (71) PEMs were identified for inclusion in the study. The PEMs came from 19 organizations, including NKDEP. Three reviewers (two clinicians and a patient) reviewed the materials. The break down for the rating system included superior (70-100 points), adequate (40-69 points), and inadequate(less than 40 points).
Based on the reviews, 21 percent of the materials received a superior rating and 79 percent received an adequate rating. Many NKDEP materials received a superior rating. These included:
- What African Americans with Diabetes or Hypertension Need to Know;
- What is CKD;
- Explaining CKD Test Results;
- Nutrition fact sheets; and
- CKD and Medicines.
Other organizations with highly rated materials included American Kidney Fund, Kidney School, and National Kidney Foundation.
The evaluation indicates that there are many high-quality PEMs available for CKD. However, there are still gaps in terms of meeting patient needs. A higher literacy level was associated with lower ratings. Also, there were gaps in the information provided by the PEMs, such as information on acute kidney injury. The evaluation also found that many of the PEMs failed to engage the patient either through the language used or the inclusion of action plans and/or motivational cues.
The limitations of the evaluation include:
- SAM does not capture all the characteristics of a PEM (e.g., time needed to read the materials or how it is used); and
- SAM does not examine the association of the ratings on actual patient understanding or clinical outcomes.
Areas for additional study include how patients use the materials and whether the materials can be linked to meaningful patient outcomes. Research could also explore how current PEMs could be improved.
The University of Washington received an NIDDK grant to develop educational materials on transplantation and dialysis for African Americans. To develop effective materials a significant amount of research must be conducted to identify the barriers to education, the most effective educational methods, the health literacy level of the target audience, how to present risk for progression to kidney disease, and other issues.
- Dr. Young asked if other types of materials were assessed as part of the evaluation. Dr. Tuot stated that the purpose of the evaluation was to assess materials that could be sent to patients following coaching phone calls. Many of the patients served by the program do not have access to the Internet. However, as mobile phone technology improves, development of videos that could be viewed on phones could be an effective expansion.
- Ms. Schatell commented that for Medical Education Institute, the most important message conveyed in their materials is that there is hope for kidney patients. Patients are not receptive to additional messages if they are not optimistic about their future.
- Dr. Haley stated that there is evidence to suggest that men and women have different levels of trust in terms of information from providers. Research indicates that women tend to be more trusting of their health care providers. He asked whether Dr. Tuot considered the sex of the patient in the evaluation. Dr. Tuot stated that they did not assess this in their evaluation but that it brings up the question of whether materials should be sex-specific and whether this would be an effective approach.
- Dr. Latos asked Dr. Tuot to identify qualities that could help to ensure a superior rating for materials. Dr. Tuot stated that elements that can contribute to the effectiveness of educational materials are: graphics that are understandable and relevant; motivational language (based on motivational interviewing techniques); basic information on CKD; and interaction/engagement with the patient (e.g., space to write questions for the provider).
- Dr. Crowley asked if there was a difference between the ratings provided by the patient reviewer and the ratings provided by the clinicians and what was the background of the patient reviewer. Dr. Tuot stated that the patient reviewer completed high school and is motivated to obtain information about her condition. Dr. Tuot stated that the patient reviewer focused most on the content of the items reviewed and interaction between the patient and the item.
- Ms. Newman asked whether there is follow up when patients are provided materials after the weekly phone call. Dr. Tuot stated that patients can request to speak with a health coach for more information.
- Ms. Zawislanski asked if ratings of NKDEP materials would be available to the program. Dr. Tuot stated that they would provide the ratings.
- Dr. Germino asked why only three reviewers were used in the evaluation and whether this was a limitation of the evaluation. Dr. Tuot stated that the evaluation is just one component of the intervention and that given the time consuming nature of the evaluation, it was not feasible to have more reviewers.
- Dr. Star asked whether inter-rater reliability was explored. Dr. Tuot stated that they reviewed inter-rater reliability for all of the questions. Following the evaluations they adjudicated the ratings to ensure agreement across reviewers.
- Dr. Narva stated that the evaluation of NKDEP materials is extremely valuable and the work of the University of California, San Francisco as part of the NIDDK grant is an example of how resources can be effectively leveraged.
IV. CDC CKD Website
The Centers for Disease Control and Prevention has launched a new website on CKD. The CKD Surveillance System documents the burden of CKD and its risk factors in the U.S. population over time and tracks the progress of efforts to prevent, detect and manage CKD. It also provides the means for evaluation, monitoring, and implementation of quality improvement efforts by both federal and non-federal agencies. The website primarily targets providers.
V. NKDEP: Evaluation Efforts, Measuring Success
At the 2011 CP meeting, Dr. Wilma Robinson from the Department of Health and Human Services, Office of the Assistant Secretary of Planning and Evaluation gave a presentation focused on the evaluation of NKDEP programs and materials. Dr. Robinson noted that program evaluation is difficult given the cost of these activities and the challenge of linking a health outcome to a specific intervention. A more effective approach is to assess increased knowledge and behavior change in the target audience. Important strategies include:
- Limiting the number of activities assessed;
- Sharing data across partner organizations;
- Applying for Office of Management and Budget clearance when appropriate, as it can provide greater evaluation-related opportunities; and
- Using available web and social media analytics.
In 2012, NKDEP focused evaluation efforts on three activities:
- NKDEP website;
- CKD Nutrition Management Training Certificate Program; and
- Promotores Program.
The website was redesigned in March 2012 to make it more attractive, user friendly, and functional. Significantly more content was added, including online tools for professionals.
To promote the website, NKDEP reached out to over 40 partner organizations. Tailored materials (e.g. eNewsletters, blogs, tweets, etc.) were provided to partners so that they could effectively reach out to their target audiences. As a result of these activities, there were over 5,000 hits to the NKDEP website (based on trackable URLs). Important partners in this effort included American Academy of Nurse Practitioners, American Association of Diabetes Educators, American College of Physicians, American Diabetes Association, CDC, Centers for Medicare and Medicaid Services, Indian Health Service, National Medical Association, and Veterans Health Administration
Media outreach was conducted to promote the Spanish-language website. Media hits were tracked and generated more than 35,000,000 impressions, which resulted in increased traffic to and enhanced visitor engagement with the NKDEP website.
Google Analytics was used to monitor visitor behavior on the website. Data were collected on the number of visitors to the site, page views, bounce rates, entry and exit rates, average time on the site, and the number of pages viewed by each visitor.
The evaluation data indicate that visitors increased by 220 percent over the same quarter in the previous year. Pages views increased by 200 percent and the average time on the site increased by five (5) percent.
The number of average monthly visitors has increased by almost 10,000. There has been a significant increase in the number of visitors that access the home page and the bounce rate from the home page decreased by 10 percent.
In addition to the data collected via Google Analytics, a pop-up user survey measures visitor satisfaction in terms of content, functionality, look and feel of the website, navigation, and search functionality. While baseline data are not available, the survey results indicate high visitor satisfaction with the website. On all individual elements and for satisfaction as a whole, NKDEP scored above the NIDDK average. The overall score for the NKDEP website for April-June 2012 was 88 out of 100, compared to an 81 for all the NIDDK websites combined.
In addition to the evaluation results, NKDEP has received other feedback, in the form of awards, which reflects on the quality and effectiveness of the website.
- Merit award by the Web Health Awards of the Health Information Resource Center
- Aesculapius Award of Excellence (for health-related websites by Health Improvement Institute)
CKD Nutrition Management Training Certificate Program
The Training Certificate Program was launched in November 2011 on the Academy of Nutrition and Dietetics professional development website. The content of the five training module, which provide 12.5 continuing education units, was developed by NKDEP. To date, almost 600 individuals have registered for one or more modules and 135 registered dietitians have received the certificate. Enrollment has been steady over time; approximately ten individuals receive the certificate each month.
The Academy is conducting two surveys related to the training program to measure the impact on nutrition practice. The first survey, administered on completion of the full program, explores the quality of the offering and expectation for changes in behavior. The second survey is administered six to nine months later and explores changes in practice on the part of dietitians, patient behavior, possible improvements to the training program, and barriers to CKD nutrition practice. In addition, NKDEP will conduct interviews with survey participants about barriers to care.
The first survey was fielded to individuals who completed the program by September 2012. Surveys were sent to 108 registered dietitians. The response rate was 48 percent. The findings indicate:
- Program is appropriate in length (86%) and complexity (80%);
- Gains in knowledge (94%) and confidence (84%);
- Intent to change behavior (71%); and
- Use of patient education information/materials (39%)
- Changing approach to treatment of CKD patients (52%)
- Interest in a more advanced CKD and nutrition training program (94%).
Of those completing the first survey, 65 percent agreed to participate in the second survey
Promotores Program Pilot Study
The goals of the pilot study are to 1) make improvements to the materials, training protocol, and the delivery of the program prior to national launch; and 2) develop a methodology and instruments to evaluate the program once it is launched at the national level. The pilot study will be conducted in New York City and Los Angeles
The pilot study is a multi-level evaluation. The intervention recipients will be surveyed before and after the intervention to measure changes in knowledge about CKD, awareness of resources, intention for self management, behavior change (e.g., self management and testing), and change in health status. An in-depth interview with also be conducted with clients to gain feedback on the program’s quality, the effectiveness of the promotore’s presentation, strengths and weaknesses, and opportunities for improvem
Five clients from five promotores at each site and in each of the two groups will participate in the evaluation for a total of 100 clients. A staggered time series approach will be used so all participants in the control group will eventually receive the intervention.
Promotores will participate in interviews both before and after the training. Behavioral observations will also be made during their training. The evaluation will explore:
- Knowledge about CKD;
- Awareness of resources, training program and materials;
- Behavior change;
- Use of the materials with the clients;
- Confidence in using materials;
- Program fidelity (stay true to materials);
- Amount of information communicated to the client; and
- Amount of information retained by the promoter.
Interviews will be conducted with the promotores to explore the quality of the training and resources, strengths and weakness of the training, and opportunities for improvement.
Members of the Coordinating Panel discussed their involvement with NKDEP evaluation activities.
There is a growing need for programs like the certificate training program and it is likely that enrollment will increase as awareness grows about the program. Dietitians that do not work specifically with renal patients are seeing much more CKD in their patients. The Academy will explore other ways to partner with NKDEP, such as encouraging dietitians to provide feedback on the NKDEP website. The Academy is also considering developing an iPhone app related to CKD and this may also provide an opportunity for collaboration.
The key to successful and efficient surveys is to have a clear understanding of what is you are trying to measure. This sounds simple but it is difficult to put into practice. For example, with educational interventions, information and increased knowledge alone do not result in behavior change. There are other factors, such as shared decision making, which influence behavior change, and should be addressed in the survey.
In addition, it is necessary to carefully consider what is added to a survey. Each question should only address a single issue and the number of questions should be limited. People are more likely to respond to a shorter survey. Stakeholders can provide valuable insight in identifying the most important elements of a survey. Surveys should also be sensitive to the literacy level of the target audience.
- Dr. Bradley complemented NKDEP on the improved website.
- Ms. McDonough asked if it is possible to determine how many individuals complete the first module of the training. Ms. Newman replied that this is not possible; the data provides only how many register for the first module.
- Dr. Young asked if there was a charge for the training. Ms Newman replied that it costs $19 per module.
- Dr. Young asked if the promotores are paid. Ms. Eberle-Blaylock said that it depends on the organization. In addition, states have different credentialing standards for community health workers.
- Dr. Narva stated that NKDEP will be convening a scientific evaluation board that will provide oversight to the program.
VI. How NKDEP Working Groups are Improving CKD Care
Laboratory Working Group
The initial focus of the working group, which was established in 2002, was to standardize the measurement and reporting of creatinine so that the reporting of eGFR would be uniform across labs. NKDEP collaborated with the College of American Pathologists and the American Association for Clinical Chemistry to identify members for the working group.
In the initial years the focus was on standardizing creatinine measurements, which would also result in standardization of the eGFR calculated values and serve as the basis for classifying patients based on their kidney function. Manufactures and labs were encouraged to calibrate their methods to the existing reference system.
It was also recognized that standardizing creatinine would result in lowering the values by 5-30 percent. Because lower values would influence drug dosing equations, representative of the pharmacy community were invited to collaborate with the working group to identify effective ways to reach clinicians that prescribe drugs and inform them of these changes so that they could compensate for the lower creatinine levels in their drug dosing algorithms.
The College of American Pathologists introduced an accuracy-based proficiency testing survey for creatinine in serum in 2005. This provided a tool by which different manufactures could be tracked as they adjusted their calibrations to achieve standardization. In 2006, the working group published its first report with recommendations for improving serum creatinine measurement. The recommendations were also posted on the NKDEP website. The recommendations included specific guidance for clinical laboratories, IVD manufacturers, proficiency testing providers, pharmacists and other prescribers, metrology institutes, and software vendors.
In 2007, the National Institute of Standards and Technology (NIST) released a new reference material (SRM967), which was creatinine in human serum. This was the first time that a reference material with validated commutability was available, meaning that it could be used in a large number of procedures and allow manufactures and labs to verify that their calibrations are correct.
As a result of all these efforts, the number of labs reporting eGFR has increased significantly. In 2011, 84 percent of all labs were reporting eGFR.
Standardization of Urine Albumin Measurement
Currently, the working group is focusing on urine albumin. Work was begun in 2007 when NKDEP collaborated with the International Federation of Clinical Chemistry and Laboratory Medicine by holding a joint conference to address standardization. Next steps include:
- Investigation of adsorption of albumin to containers;
- Investigation of the state of the art in harmonization among urine albumin measurement procedures, and assessment of two candidate reference materials for calibration of urine albumin;
- Development of urine albumin and urine creatinine reference materials by NIST; and
- Development of urine albumin reference measurement procedures by Mayo Clinic and NIST.
The working group expects to have a reference system for urine albumin in place in the next few years. This will allow manufacturers to standardize measurements. With standardized measurement, clinical decision points can be more reliably used and refinement of the decision points can be investigated.
- Dr. Haley asked about devices that are used to measure creatinine in emergency rooms and other settings that do not seem to provide standard results. Dr. Miller said that there are various devices in use but it is challenging to achieve the same level of performance from these devices as for mainframe lab equipment.
- Dr. Latos asked if the differences between urinary protein creatinine ratios and 24-hour urine protein measurements are related to the different methodologies for albumin measurement. Dr. Miller said that protein measurement are not useful for early detection of patients but are useful when patients have more advanced disease. In the future albumin is likely to become the primary measure.
- Ms. Frazier asked if there are any recommendations about the estimating equations for eGFR for outreach/screening purposes. Dr. Narva said that the estimating equations are not precise tools. The focus should be on educating people about why it is important to use estimating equations and to help clinicians understand the uncertainty associated with the laboratory assessment of kidney disease.
- Dr. Narva emphasized the significance of the working group’s contribution to the diagnosis of kidney disease. It has had a huge impact on public health, clinical care, and research.
HIT Working Group
Trends in health care and ongoing system change are driving the adoption of health information technology (HIT) in order to promote patient engagement, improve outcomes, and optimize resources. In particular, health care reform and the focus on meaningful use of the electronic health record (EHR) will result in significant systematic change.
A major trend is the move toward increased patient control and involvement in care, which is dependent on the flow of information between providers and patients. The Internet has provided greater access to information. It allows patients to exchange information and experiences among themselves. There are also devices and tools that patients can use, such as monitoring apps and apps that help support behavior change.
The primary goal of the working group is to enable and support the widespread interoperability of data related to kidney health among health care software applications to optimize CKD detection and management. This effort will support NKDEP’s efforts by mobilizing data related to the detection, prevention, and management of kidney disease to flow freely through EHRs, personal health records, decision support systems, disease registries, surveillance systems, etc. In addition, the working group will:
- Promote CKD surveillance and registries;
- Help to satisfy meaningful use requirements;
- Provide data that is more suitable for high-quality research on kidney disease; and
- Improve management of CKD through greater care coordination by integrating with decision support systems, PHRs, mHealth applications, ePrescribing, etc.
The working group’s short-term objectives are listed below.
- Agree upon data components critical to kidney disease detection and management that should be included in EHRs and readily available to patients and providers; develop a recommendation around the inclusion of these measures in EHRs.
- Develop a strategic context of the HIT landscape as it relates to kidney health.
- Identify significant impediments to the interoperability of kidney health data and develop recommendations for overcoming these barriers.
- Identify pathways, using a patient-centered approach, which will allow for successful and streamlined flow of kidney health information through the health system.
- Disseminate HIT strategic context and working group recommendations to key kidney health stakeholders, including relevant government, organization, and industry groups.
- Select significant and actionable barriers as priority activities for the working group to address.
- Patients and their families
- Public health organizations
- Non-profit organizations
- For-profit organizations
- HIT organizations
- Dr. Crowley commented that VA has developed many HIT tools and has integrated use of the EHR. Dr. Patel commented that there are great resources but also that the VA system is a closed system and most patients receive care from many different providers.
- Dr. Haley stated that only about 40 percent of doctors are using EHRs and most will not meet the criteria for meaningful use. This presents a challenge for greater incorporation of HIT. Dr. Patel stated that the changes in the health care system (e.g., Affordable Care Act) will drive change. In addition, patients will drive change.
- Dr. Camp stated that the HIT industry is a huge stakeholder in this process and needs to be engaged.
Pharmacy Working Group
Amy Barton Pai
Pharmacists play a critical role in the treatment of CKD. Beyond those pharmacists who focus on nephrology, it is important to engage primary care pharmacists, those focused on diabetes, and pharmacists practicing in the community setting. In addition, in some institutions, such as the VA and Indian Health Service, pharmacists have an advanced scope of practice.
Working Group Objectives
- Increase the number of community pharmacists who have the requisite CKD knowledge (e.g., kidney function) to provide patients with CKD education.
- Provide pharmacists with the tools and resources to educate patients about CKD.
- Establish community pharmacy sites as a place for patients to receive CKD education.
- Empower patients to initiate discussions with their pharmacists about their health, particularly CKD.
The first project for the working group is the development of CE opportunities for pharmacists. The proposed initial offering is information for patients about NSAID avoidance. Albany College of Pharmacy and Health Sciences has already developed educational materials on this topic, which can be modified for an online training with an opportunity for additional CE by submitting documentation of providing NSAID avoidance education to patients. In addition, the working group is exploring providing a CE opportunity through the American Pharmacists Association. The working group is also exploring the possibility of including NSAID avoidance sections in the Handbook of Nonprescription Drugs, a widely used reference in community pharmacy practice.
The working group will be reaching out to stakeholders including the American Pharmacists Association, American Society of Health-System Pharmacists, and American College of Clinical Pharmacy to engage them in Workgroup activities and how to best provide opportunities to their membership.
Long-term objectives for the working group include discussions with the NKDEP HIT Working Group regarding the possibility of eGFR inclusion on electronic prescriptions. Electronic prescriptions are a logical focus for both groups since more than a third of prescriptions originate as e-prescriptions (and this number is expected to grow). The community pharmacy is an ideal venue to educate people with and at risk for CKD. Community pharmacies are in locations that are both highly populated and underserved—where patients’ access to medical care may be limited. Currently, most community pharmacists have no access to objective data regarding kidney function, preventing them from initiating informed conversations with patients about CKD.
- Dr. Haley stated that there are tools available for pharmacists (e.g., formulary addressing drug issues at various stages of CKD). Dr. Pai said that there are many resources like this for pharmacists. Pharmacists need to understand how to use these tools to make decisions about individualizing therapy, especially with the uncertainties of creatinine clearance.
- Dr. Young stated that eGFR information should be included on prescriptions. However, patients may not know what eGFR is and may not know their disease stage, or even that they have kidney disease. Dr. Narva stated that NKDEP does not use the disease stages in its materials and they are not included in the new KDOQI Guidelines. Dr. Pai said that pharmacists could use this information as a tool in their discussions with the patient and could initiate a referral for further discussion of the patient’s risk for CKD.
- Dr. Camp stated that pharmacists can help to support medication adherence. Dr. Pai stated that increasing patient health literacy about medication can help to support adherence.
VII. Partner Updates
American Kidney Fund
To promote Family Health History Month (November), AKF and NKDEP collaborated on several activities. For example, AKF added a family history webpage with key message to their website. Over 500 of the visitors to the webpage spent more than two minutes on the page, which indicates significant engagement. The message was also posted on AKF’s grants management system. A blast email was sent to 4,200 renal professionals, with a click through rate of 17 percent. Messages were included in AKF’s electronic newsletters, which have a distribution of over 57,000. Messages were also distributed via social media (e.g., Facebook, Twitter) during November.
VIII. Closing Remarks
Dr. Narva thanked the panel members for their ongoing support of NKDEP activities.
February 27, 2013