Share and report community-wide health data
What types of incentives or regulatory requirements are needed to prompt
health systems to a) share timely patient data and b) consistently collect and
report health data by race and ethnicity?
Quality improvement efforts designed to reduce health
care disparities in diabetes will require providers and health systems to more
consistently and uniformly measure disparities. Federal requirements under
health reform require providers and federally supported health care programs to
collect a detailed list of demographic data. The ACA requires HHS to adopt new
standards for data collection by race, ethnicity, sex, primary language and
disability status.vi These new
standards are expected to lead to improved identification of health disparities
and the creation of better interventions to address them.
addition to collecting more complete and uniform patient data, health systems
are increasingly being challenged to develop other types of community-based
datasets. The datasets could include timely patient data and describe
hospitalizations, emergency department or urgent clinic visits, physician
office visits, medication prescribed, and other data that describe the range of
health services provided. This type of sharing of data can greatly enhance the
care coordination so critical in managing diabetes patients.
systems face many challenges in their efforts to collect more comprehensive
data and to create these datasets. Challenges include tight budgets, inadequate
staff expertise, and lack of information technology infrastructure to meet
regulatory requirements for data collection and to realize the benefits of such
data collection. Furthermore, some providers express concerns that capturing
such data could raise privacy concerns among patients and within the community.
The Alliance Experience
sites have demonstrated the impact of consistent and uniform collection and
sharing of meaningful performance measures stratified by race and ethnicity.
Such patient data are enabling Alliance site providers and health systems to
better target interventions and to monitor performance on an ongoing basis. For
the Camden Alliance site, data sharing across institutions is helping to
identify individuals who need the most intense case management. Data are also
enabling the health system to better assess the impact of its various policies
to improve health care quality, control costs and expand access to care in
- Camden expects that all major EHRs will adopt automatic
registry-building capabilities within the next year as a means of remaining
competitive. At this point, all major EHR systems in Camden have promised to
offer this function, an action that will allow providers across health systems
to manage a population without duplicating work. The Camden Health Information
Exchange (CHIE) will provide extensive patient data to providers across the
city. The CHIE will, in effect, play the role of registry with respect to easy
access to patient data across health systems.
use of a diabetes registry in the Diabetes Equity Project (DEP) in Dallas also
has yielded benefits. Data from the registry have been included in electronic
medical records and patient charts, allowing health staff in the DEP to
identify high-risk patients. Program staff also implemented a series of uniform
patient data collection protocols across 110 provider network clinics,
protocols that systematically ensured the recording of patient self-declared
race, ethnicity and language choices from a prescribed list. In combination,
these data allowed the DEP to identify the percentage of each group (e.g.,
ethnic, racial, language) that met the diabetes management goal and to
understand statistically significant differences in outcomes at a 95 percent
challenges remain. Providers working with the DEP can only see data on a
patient that are recorded as part of the project. To find data on a patient’s
experiences in other care delivery settings, providers must engage in a complex
matching process to identify that patient and sometimes still cannot gain
access to other health systems’ information.
Policy Questions Arising from the Alliance
is needed to allow state health data reporting requirements to include that
clinical care and public health departments report data (e.g. A1C levels) by
race, ethnicity, gender and payer? This stratification can reveal where
disparities exist and allow for greater targeting of efforts.
- The American Recovery and Reinvestment Act (ARRA) of
2009 provided incentives for physicians to purchase and implement Health
Information Technology (HIT) systems. While this is a good first step, how can
these funds also be utilized to develop uniform electronic standards to allow
various HIT systems to communicate with each other?
funding mechanisms exist for the development of health information exchanges
(HIEs) that share timely patient data and identify at risk and vulnerable
can privacy concerns about aggregation of and access to data through community
health information exchanges (HIEs) be reduced? For example, some barriers to
sharing data created by HIPPA could be overcome by creating processes for
routinely consenting patients to allow for data sharing.
- How could Accountable Care Organizations serve as
aggregators and disseminators of timely health care information from various
health providers regarding at risk and vulnerable patients?
can incentives for clinical and public health systems be created to enable
reporting on and success in reducing disparities in diabetes?
How can health clinics access new funding made
available through the ACA to implement health information technologies?