​​HIT Working Group Conference Call – November 22, 2013

National Kidney Disease Education Program (NKDEP) Health Information Technology Working Group (HIT WG) Meeting


Uptal D. Patel, MD; Andrew Narva, MD, FACP, FASN; Eileen Newman, MS, RD; Patrick Archdeacon, Theresa Cullen, MD, MS; MD; Paul Drawz, MD; Kensaku Kawamoto, MD; Celeste Lee; Kimberly Smith, MD, MS

Meeting Summary

Welcome, Uptal D. Patel, MD; HIT Working Group Chair Dr. Patel welcomed members and thanked them for their attendance and their feedback on the draft white paper, “Incorporating CKD-related data in electronic health records to improve patient care, public health surveillance, and research for patients with CKD: Recommendations from the NKDEP Health Information Technology Working Group”.

White Paper Discussion, Paul Drawz, MD
Dr. Drawz, lead author and Working Group member, summarized the overarching goals of the paper:

  • To discuss the type and structure of data needed within electronic health records (EHR) in order to improve chronic kidney disease (CKD) care, surveillance, and research;
  • To establish CKD as a model that proves the feasibility of EHRs for improving the care of patients with other chronic conditions; and
  • To encourage primary care professionals to support implementation of accessible, interoperable CKD data into EHRs.

The paper focuses primarily on early CKD but also addresses some of the particularly challenging aspects of advanced CKD and the transition to end-stage renal disease (ESRD). The paper is not intended for an information technology (IT) audience, and therefore, includes only a brief summary of technological issues. Additionally, the paper focuses on data and features (e.g., flowcharts, searchable data points) that are not currently available in most EHRs rather than data (e.g., estimated glomerular filtration rate) that are available.

Feedback The Working Group thanked Dr. Drawz for a very strong draft of the paper and provided the following suggestions to improve the draft:

  • Clarify which items/data are already available in a majority of EHRs versus those that are needed;
  • Explain that trend data is particularly important for CKD;
  • Target messages to the entire health care team—including focus on transition from primary to nephrology care—to support continuity of care and reflect collaborative care shown in the Chronic Care Model.
  • Ensure content speaks to hospital administrators in addition to health care providers as administrators will be important stakeholders in EHR decisions;
  • Clarify terminology around “forward-facing” data for patients/providers and “back-end” data for research;
  • Consider addressing the benefits of health IT to patients earlier in the paper;
  • Ensure that incorporation of CKD data into EHRs is clearly explained as a model for EHR-based management of numerous chronic diseases.
  • Explicitly acknowledge target audiences, particularly when a certain action requires efforts from a specific group; and
  • Include more explicit, bulleted “benchmarks” statements to clarify proposed actions.


The Working Group needs to select a journal to target for publication. The paper touches on content relevant for primary care, nephrology, and health IT/informatics journals; however, a journal that is widely distributed among primary care providers would be best since primary care providers are the main target audience. The Working Group agreed to submit the paper to a credible, primary care provider-focused journal. The Journal of General Internal Medicine, the Annals of Internal Medicine, and Archives of Internal Medicine are possibilities.

Before publication, government organizations of the public officials listed as authors may need to “clear” the paper. This will include review by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which is a relatively brief (1 or 2 day) process. If the National Institutes of Health reviews the paper, it will not need to go through Centers for Disease Control and Prevention (CDC) review channels.

Tables and Figures

The draft paper includes three tables/figures for the Working Group’s consideration:

  • Table 1: CKD related data and their clinical use
  • Figure 1: How HIT Can Improve CKD Care – Interactions with the Chronic Care Model
  • Figure 2: Example of a CKD Population Management System Embedded Within an EHR

The Working Group agreed Table 1 and Figure 1 should be included. Some Working Group members expressed concern that Figure 2 might be too “in the weeds” and could distract from the paper’s main message. However, others noted Figure 2 may be necessary to help readers understand how an EHR could be designed to allow for identification of patients with CKD and specific comorbidities and complications. The Working Group ultimately decided to include Figure 2 as an online supplement, with a link to Figure 2 in the paper.

Future Publications

There is a gap in the literature on the continuum of care as related to CKD and health IT. Since it may not be feasible to add a focus on the continuum of care in this paper, it may be a beneficial topic for the Working Group to address in the future. Additionally, addressing the continuum of care as a separate effort could better emphasize a patient focus.

Next Steps

  • Dr. Drawz to revise the paper based on feedback and recirculate to the Working Group for final review.
  • Dr. Narva will submit a final draft for NIDDK clearance.
  • Submit the paper for publication.

Performance measures, Group Discussion
The Working Group discussed the draft measures for inclusion in EHRs:

  • BP Control in CKD
  • Angiotensin Antagonist in Proteinuric CKD

Each measure includes an outline of the numerator and denominator as starting point. Dr. Patel will resend the draft measures and numerator/denominator outline to the group for reference. The measures still seem appropriate in light of the recently released American College of Physicians guidelines. Similar measures currently approved by the National Quality Forum (NQF) rely on administrative data rather than clinical data.

Measure Testing

In order to incorporate measures based on clinical data into EHRs, the measures must be tested in the field. Testing measures is a long, expensive process that will require support. Dr. Narva has identified contacts at the Centers for Medicare and Medicaid Services (CMS) and will contact them to see if CMS would be willing to support testing. CMS currently has a contract for testing ESRD measures but not CKD measures. However, CMS may be able to add CKD measures to either the ESRD contract or another relevant contract (e.g., ambulatory care, EHR data). The CDC also may be willing to support measure testing as related to surveillance. In addition to testing support, a testing location will need to be identified. A large, local healthcare system (e.g., Kaiser of Southern California) could be an option for testing. Dr. Cullen noted that the Veterans Administration (VA) may be able to provide some testing and data on the draft measures. Currently, the VA is reviewing LOINC codes and has lab data in its system.

Health eDecisions

During the March Working Group meeting, Health eDecisions was raised as a potential avenue for testing measures via the clinical decision support (CDS) template. Health eDecisions focuses on enabling the translation of CDS interventions into implementable components in order to increase the speed and ease of adoption by the provider community. Dr. Kawamoto, initiative coordinator for Health eDecisions, reported that the Health eDecisions case one is not yet in draft regulation and that it may be best to pursue other testing avenues. However, it may be possible to use case two in the future, as a second step after initial testing.

Next Steps

  • Dr. Narva to pursue a testing location and contact CMS regarding testing support.
  • Dr. Patel to send draft measures and numerator/denominator outlines to the Working Group.

Getting Data to Patients, Group Discussion
Dr. Patel recommended that the next major Working Group focus should be getting clinical data to patients. The Working Group should consider working with large EHR vendors to provide patients with easier access to information that is most helpful/useful to the patient. The National Library of Medicine’s (NLM) MedlinePlus Connect, a free service of that allows health organizations and health IT providers to link patient portals and EHR systems to MedlinePlus, may be an avenue to pursue. Currently, NLM is working on including patient education materials from all National Institute of Health programs in MedlinePlus Connect. It may be helpful for members of the Working Group to meet with NLM to learn more about the process.

Next Steps

  • Schedule a call with Dr. Narva, Ms. Newman, Dr. Patel, Celeste Lee, and other interested Working Group members to discuss next steps.