Why develop a registry?

A registry is an essential tool for the medical home serving children and youth with special health care needs (CYSHCN). The designation of CYSHCN includes not only those with chronic medical conditions, but also those with other complex conditions, such as being in foster care or having a developmental/behavioral/mental health condition. Importantly, a registry also would include those at-risk, such as those experiencing adverse social determinants of health or social-emotional or behavioral symptoms, as well as those with a diagnosed mental health condition.

The use of registry can help standardize the care of those subpopulations (eg, frequency of visits, content of visits, measures of functioning, protocol for outreach to family between visits, communications with schools, criteria for specialty involvement, acquisition of specialists’ reports). Not only can the registry be used to track an individual patient’s progress, but also to iteratively improve processes for that whole subpopulation of patients, potentially enhancing their outcomes.

Coordination is a key component in the family-centered medical home. The CYSCHN often need an expanded medical home team with specialty (including mental health) and school involvement. A registry facilitates this coordination and provides data for individual and population management. The added value of a registry is that it facilitates risk stratification of the practice population (the range and proportion of patients with complex conditions) and positions the practice for value-based payment.

Electronic Health Record (EHR) challenges to developing a registry:

Currently, most (if not all) EHR products do not have registry function. Especially for pediatrics, clinical information is most often not structured data that can be extracted and organized for registry function.

Strategies for Developing a Registry Outside of an EHR:

Using the practice management system

  • Assign a flag for children and adolescents who have a social-emotional/developmental/mental health concern in the patient’s demographic profile. This flag would be created by the practice and designated by the Primary Care Clinician who follows the child/adolescent and is familiar with the family. Examples could be “COMP” for “complex” or TLC for “team led care”. This has great utility for population management:
    • Using the flag, generate a list of patients with these complex needs and review monthly to remind and schedule those who have not had a visit in 6 months. (In keeping with the chronic care model with more than one regular visit each year).
    • The flag alerts schedulers to provide time for a longer visit (especially for follow-up and acute visits), and to be sure that the child/adolescent sees their primary provider (priority of continuity).
    • The flag provides an alert for patients who especially need pre-visit planning to identify which members of the medical home team need to be involved with the routine visit (e.g. integrated mental health professional) and/or which members need to provide feedback before the visit (e.g specialist, school staff).
  • Sort the list by using ICD-10 diagnosis codes – specific diagnoses such as from the DSM 5 or DC:0-5, and/or Z-codes that reflect risk (e.g. social determinants of health, childhood adversity) – to track for follow-up and referrals

Workarounds

  • Develop an external tracking document (eg, in Excel) for patients with known diagnoses, positive screens, significant risk factors. Such a document assists with tracking referrals and closing the loop, particularly for non-traditional, outside the health system referrals to community supports and resources.
  • Some EHRs offer flowsheets that require some double entry, but that can be adapted to provide some registry functions as above. The advantage here is that clinical data other than billing codes could be included.

Author: Marian Earls, MD, FAAP
4/6/2020