Development of an Electronic CKD Care Plan

To address challenges with the transfer of health information for patients with chronic kidney disease (CKD), the National Institute of Diabetes and Digestive and Kidney Diseases convened clinicians, informaticists, patients with CKD and other key stakeholders as a CKD Care Plan Working Group to identify the CKD-related elements that should be included in a comprehensive electronic care plan template.

Electronic care plans are intended to facilitate longitudinal transfer of key patient data across settings, providing access to the patient and all health care professionals who provide care to the patient. Electronic care plans rely on data standards to ensure that information can be reliably transferred from setting to setting, as well as on existing infrastructures for sharing health data (e.g., health information exchanges). Because frequent transitions of care are common among patients with CKD, an electronic CKD care plan could potentially improve patient outcomes by helping to ensure that critical patient data are consistently available to both the patient and his/her providers.

This web page provides details about the CKD Care Plan Working Group process, as well as access to a draft set of data elements for inclusion in the electronic CKD care plan. The Working Group welcomes feedback and comments on the draft set of data elements from patients with CKD, their family members, and the clinicians who care for them.

Identifying and Prioritizing Data Elements and Standards

Based on expert opinion, Working Group members initially identified a comprehensive list of data elements relevant to the care of individuals with CKD who are not receiving renal replacement therapy. To address competing attributes of brevity and comprehensiveness, the Working Group members prioritized the data elements into a minimum data set (deemed essential for all care providers) as well as priority A and B items that may only be necessary in certain contexts.

Personas and scenarios. Following principals from user-centered design, an approach often employed in software development, Working Group members developed personas and scenarios to guide identification and prioritization of data elements. Personas are fictional characters developed to represent a range of care plan users (e.g., patients, nephrologists, primary care providers, dietitians, a pharmacist, etc) and scenarios are fictional situations in which the care plan may be used. The 11 personas are now available to download: Provider Personas (PDF, 2.76 MB) , Patient Personas (PDF, 1.71 MB) , and Patient Barriers (PDF, 496.04 KB) . The scenarios will be available soon.

Patient interviews. To ensure the patient perspective was adequately captured in both data element identification and prioritization, the Working Group conducted interviews with nine patients with CKD to better understand what data elements patients want to be able to access directly, and what data elements they feel should be provided to their clinicians. Additional patient input and feedback will be sought through pilot and usability testing of the care plan.

Identifying data standards. Once data elements were identified and prioritized, the Working Group searched existing data standards, including LOINC, SNOMED-CT, ICD-10, CPT, and RxNorm (for medications), to identify codes for each included data element. For data elements with no existing codes, the Working Group partnered with the Regenstrief Institute to develop new LOINC codes. The following LOINC Codes are now live.

The draft set of data elements and codes

Based on feedback from people with CKD, clinicians, informaticists, EHR vendors and standard developing organizations, among others, the Working Group is revising its initial, draft set of data elements. The initial draft set can be downloaded as an excel document, and the revised data set will be available in soon. The Working Group published this data element set to facilitate feedback from patients with CKD, their family members, the clinicians who care for them, informaticists, developers, and other interested parties. Future steps include plans to validate the data set in a variety of settings. The Working Group recommends against implementing the draft care plan elements as they have yet to be validated and are not finalized. If you are interested in receiving the final data set, please contact Jenna Norton at jenna.norton@nih.gov.

Download the Draft Data Set - Revised July 2019 (XLSX, 273 KB)

Providing feedback on the data set

The Working Group welcomes feedback on the data set. We are particularly interested in feedback from patients, caregivers and all clinicians involved in CKD care in the following areas:

The amount of information considered reasonable to include in the data set to support a patient based care plan;
The influence of your role (e.g., patient, caregiver, primary care provider, nephrologist, dietitian, social worker, pharmacists, etc.) on your data needs for a care plan;
Critical data elements missing from the data set;
Any elements that should be given a higher or lower priority;
Any data elements that are not helpful and should be removed from the list.

Please send any comments to Jenna Norton at jenna.norton@nih.gov. Along with your comments, please provide information on your background (e.g., patient, clinician, researcher, etc) so we can better understand your perspective.

Wireframe development and testing

In partnership with the Veterans Health Administration Human Factors Design Team, the Working Group is developing a wireframe to ensure display of e-care plan data is user-friendly and appropriate to the clinical workflow. The draft care plan wireframe is nearly finalized. Wireframe testing with practicing clinicians will soon be underway.

Testing the data set

The Working Group hopes to pilot test the data set in multiple settings and is exploring opportunities to pilot.

If you are interested in testing the data elements at your institution, please contact Jenna Norton at jenna.norton@nih.gov.

Last Reviewed October 2023