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Working Group

National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

National Kidney Disease Education Program (NKDEP)

Health Information Technology Working Group (HIT WG) Meeting

ASN Annual Meeting – San Diego, CA

October 31, 2012

1:00 p.m. to 3:00 p.m. PT

Participants: Uptal D. Patel, MD; Andrew Narva, MD, FACP, FASN; Eileen Newman, MS, RD; Patrick Archdeacon, MD; Theresa Cullen, MD, MS; Paul Drawz, MD; Celeste Lee; Neil R. Powe, MD, MPH, MBA; Kimberly Smith, MD, MS; Desmond Williams, MD, PhD

Meeting Summary

Welcome and Introductions, Uptal D. Patel, MD; HIT Working Group Chair
Dr. Patel welcomed members and thanked them for attending. Participants introduced themselves and shared their background. [Participant backgrounds are provided in an attached document.] Dr. Patel introduced members unable to participate in the meeting: Ken Kawamoto, Brenda Hemmelgarn, and Thomas Sequist.

About NKDEP, Andrew Narva, MD, FACP, FASN; NKDEP Director
NKDEP was established in 2000 by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Using the Chronic Care Model (CCM) as an organizing principle for its efforts, NKDEP aims to reduce the morbidity and mortality caused by CKD and its complications. To achieve its goals, NKDEP works to raise awareness among people at risk for CKD about the need for testing; educate people with CKD about how to manage their disease; provide information, training, and tools that help health professionals better identify and manage CKD patients; and support health system change to improve CKD care and research.

NKDEP's Laboratory Working Group (LWG) has worked to effect laboratory system changes to yield more accurate, reliable, and accessible test results. The LWG has successfully supported standardization of serum creatinine measurement to improve accuracy of eGFR estimations, and is now working to standardize measurement and reporting of urine albumin.

Origins of the HIT Working Group, Dr. Narva
NKDEP's interest in HIT stems from a community health center (CHC) pilot project which NKDEP conducted to test effective strategies for improving CKD detection and care. During the project, all participating CHCs adopted electronic health records (EHR). The study team experienced difficulty in extracting data from the various EHRs which could not communicate across individual health centers. Due to the limitations common to all the EHR platforms, pilot project efforts to establish registries and determine progress in meeting CKD measures was greatly hindered. This experience motivated NKDEP to promote change in HIT using processes modeled on the Lab WG. The creation of the HIT WG is NKDEP's first formal effort to support HIT systems change.

Proposed Goals of the HIT Working Group, Dr. Patel
The primary goal of the HIT WG is to enable and support the widespread interoperability of data related to kidney health among healthcare software applications to optimize CKD detection and management. During its 12-year history, NKDEP has supported efforts within each area of the CCM. Moving forward—with the inception of the HIT WG—NKDEP hopes to enable information flow across the areas of the CCM, between patients, providers, and the health care system. The lack of coordination of care is a major need and could be a significant target for the WG. Fragmentation of the healthcare system produces barriers to care, including overstressed primary care providers, uninformed and passive patients, lack of EHRs, dysfunctional financing, and lack of integrated systems. The WG may have opportunities to address all of these barriers in some way, by supporting standardization of data and systems to allow free flow of information by putting the patient as the source of control. Additionally, the WG may help satisfy meaningful use (MU) requirements; promote CKD surveillance/registries; provide high-quality data suitable for CKD research; and improve CKD management via integration with decision support systems, personal health records, mHealth applications, ePrescribing, etc.

The World Health Organization's National eHealth Strategy toolkit provides a model for establishing the WG's plan to support interoperability of kidney health data. A summary of the Toolkit has been provided to members.

Roles and Responsibilities of HIT WG Members, Dr. Patel
WG members will provide NKDEP with expertise and connections to ensure NKDEP efforts to improve kidney HIT move in the right direction. While most work will be conducted by NKDEP and its support staff, members may be asked to conduct specific activities as needed. Members are expected to attend quarterly meetings and calls. In-person meetings will alternate between kidney and HIT meetings to accommodate all members.

HIT WG Objectives and Activities, Group Discussion
NKDEP proposed the following objectives and activities for the WG:

Short term objectives and activities to be completed within six to twelve months

  1. Agree upon data components critical to kidney disease detection and management that should be included in electronic health records (EHR) and readily available to patients and providers; develop a recommendation around the inclusion of these measures in EHRs.​
  2. ​​​Develop a strategic context of the HIT landscape as it relates to kidney health.
    1. Identify significant impediments to the interoperability of kidney health data and develop recommendations for overcoming these barriers.
    2. Identify pathways—using a patient-centered approach—that will allow for successful and streamlined flow of kidney health information through the health system.
  3. Disseminate HIT strategic context and WG recommendations for overcoming barriers and inclusion of data in EHRs to key kidney health stakeholders, including relevant government, organization, and industry groups.
  4. Select significant and actionable barriers as priority activities for the WG to address.

Long term objectives and activities to be completed within one to three years

  1. Engage industry (lab services, pharmacies, etc.), government, and organization partners to address selected barriers and move WG recommendations forward.
  2. Eliminate at least one priority barrier selected for action by the WG.
      1. Work with major EHR companies (e.g., NextGen, Epic, Athena Health) to incorporate agreed upon data components as searchable measures in EHRs.
      2. Work with major electronic prescription companies (e.g., Express Scripts, Surescripts) to include eGFR within electronic prescriptions. (Recommended by NKDEP's Pharmacy WG.)
    1. Identify data components and relationships critical to management of CKD that should be included in EHRs and readily available to patients and providers; develop a recommendation around the inclusion of these measures in EHRs.

    Proposed WG objectives/activities are reasonable, but will require significant effort. NKDEP and its staff will support WG efforts and conduct ground work, and members will provide expert recommendations and review.

    Key stakeholders and stakeholder engagement strategy, Group Discussion
    The following groups should be included as stakeholders:

    • Patients and their families/caregivers
    • Health Care Providers
      • Nephrologists
      • Primary care providers
      • Other subspecialists
      • Nurses
      • Pharmacists
      • Dietitians
    • Insurers/payors
      • Centers for Medicare and Medicaid Services
      • Private insurers
      • Large employers
    • Public health organizations
      • CDC
      • FDA
      • Agency for Healthcare Research and Quality
      • Office of the National Coordinator for Health Information Technology
    • Non-profit organizations
      • American Society for Nephrology
      • National Kidney Foundation
      • American Association of Kidney Patients
      • Kidney Care Partners
    • For-profit organizations
      • Pharmaceutical companies
      • Large and mid-size dialysis organizations
      • Information and communications technology companies (e.g., Verizon)
    • HIT organizations
      • EHR Providers (e.g., EPIC, Cerner)
      • PHR/mobile Health (e.g., HealthVault)
      • Labs (e.g., LabCorp, Qwest)
      • Pharmacies (e.g., Express Scripts)
      • Standards organizations (e.g., CDISC, HL7, HITSP)

    Developing a compelling argument as to why it's in industry's best interest to support HIT WG efforts will be key to industry engagement. NKDEP's HIT WG—as a neutral and honest broker with a multi-disciplinary team—could make significant progress here. Developing a business case detailing how data interoperability may benefit industry could support stakeholder outreach.

    NKDEP's LWG developed a Manufacturers Forum to facilitate industry communication and to ensure a transparent process. Such a model could be successful for the HIT WG in engaging industry partners.

    Learning from related efforts, Group Discussion
    HIT needs are similar across several health conditions; the WG should consider efforts from others who may be approaching HIT from a different disease perspective. WG efforts should be synergistic—rather than competitive—with ongoing efforts such as CDC's surveillance system. Reviewing ongoing efforts will allow NKDEP to learn from experience in coordination of care and information sharing and to review existing algorithms for data searching functionality. Based on these reviews, NKDEP should develop use cases to showcase successful efforts. Potential efforts to review include:

    • Pioneer Accountable Care Organizations (ACO)
    • State-wide EHR efforts in Massachusetts and Rhode Island
    • Kaiser Permanente and other large HMOs
      • Kaiser Hawaii
    • Effective uptake of the VA standard EHR extract (developed through the Nationwide Health Information Network (NHIN) C32-Summarizations, which are designed to enable the VA to share data with other federal partners as well as private providers) in Pennsylvania. (While HIT software developers—including EPIC—are coming onboard with C32s, the VA has had limited success in sharing data in locations other than Pennsylvania.)
    • Other Individual VA facilities
      • Cleveland VA
    • Dr. Hemmelgarn's work with the Alberta Kidney Disease Network
    • NIH Clinical Trial Planning (R34) Grants
    • Chet Fox's work on the DARTNet AHRQ P30 grant

    Data components for inclusion in EHRs, Group Discussion
    A suggested set of CKD measures for inclusion in EHRs could be a helpful starting point for discussion with EHR developers. Suggested measures should be strategic and consistent with ONC and MU measures.

    Suggested CKD measures could be prioritized into primary (required) and secondary (elective) levels. This prioritization would allow for a staged implementation, with primary measures implemented first followed by secondary measures. MU efforts are following a similar staged approach. Additionally, it may be helpful to categorize the data components into population management versus patient care measures, with explicit explanation of their intended purpose.

    A highly nephrocentric approach might hinder efforts, but creating an entire healthcare documentation system is outside the scope of the WG. Estimated glomerular filtration rate (eGFR) and urine albumin-to-creatinine ratio (UACR) are broadly applicable across conditions including diabetes, hypertension, and heart failure. The WG should not make assumptions around current inclusion of data that seems self-evident, and that a more explicit request—including all needed data—might be more effective.

    The following components were discussed by the group as being critical to kidney disease detection and management:

    • eG
    • FR with creatinine
    • UACR (albuminuria)
    • Access type
    • Blood pressure levels
    • Blood pressure medications
    • Cholesterol
    • Demographics*
    • Diabetes status (controlled versus not controlled)
    • Drug-allergy interactions*
    • Drug-drug interactions*
    • Duration of disease
    • ESRD status and type
    • Family History of kidney failure
    • Height and weight/ body mass index
    • Hemoglobin A1C
    • Imaging codes
    • Lab results
      • Intact parathyroid hormone
      • Vitamin D
      • Phosphate
      • Bicarbonate
      • Hemoglobin
    • Medication lists*
    • Nephrology visit
    • Problem lists*
    • Renal replacement therapy preference
    • Smoking Status*
    • Transplant status
    • Treatments
      • Vitamin D/Analogues
      • Sodium bicarbonate
      • Phosphate binders
      • Erythropoiesis-Stimulating Agents
    • Use of Angiotensin II Receptor Blockers
    • Use of Angiotensin-converting enzyme Inhibitors
    • Vital Signs*

    * Currently included under MU

    Significant barriers to data interoperability, Group Discussion
    Searchability issues exist within EHR systems; while many large HMOs support search functionality, most proprietary systems marketed to organizations with less than 100,000 people do not provide this functionality. Additionally, while certain large organizations have typically had success with intra-organization data sharing efforts, lack of coordination and data sharing across organizations is a significant issue and will be a major barrier to data interoperability.

    Strategy for Overcoming Barriers, Group Discussion
    The following strategies could be helpful in overcoming data interoperability barriers.

    • Using a regulatory approach by producing quality measures for MU via CMS.
      • Standards—driven by MU—are needed to describe how data should be shared.
      • It is unlikely that major EHR software vendors will implement EHR one-off updates.
    • Developing a business case for cost savings/increased revenue based on an evidence review. For example, improved data sharing may reduce costs associated with delivery of unneeded medications.
    • Acknowledge the realities of HIT implementation.
      • Prioritize efforts—similar to MU implementation—to overcome limited bandwidth.
      • Make implementation easier by creating default templates.
    • Identify existing evidence showing HIT's ability to improve care and ongoing studies assessing the impact HIT on quality of care; build on this evidence by conducting or sponsoring HIT case studies.
    • Highlight exemplary efforts in HIT to create role models in the HIT space.

    Next Steps, Dr. Patel

    • Finalize stakeholder list and develop a plan for stakeholder engagement.
      • NKDEP to draft stakeholder list and engagement plan and circulate to WG members.
      • WG member to review draft, suggest changes, and approve.
    • Aggregate use cases showing successful implementation of kidney data in EHRs
      • WG members to share all known use cases with the WG.
      • NKDEP to compile a master use case list and review for trends in measures used.
    • Develop prioritized list of CKD measures categorized by population management versus patient care.
      • NKDEP to draft proposed list of CKD measure and circulate to WG members.
      • WG member to review draft, suggest changes, and approve.


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