Promise and Pitfalls: A Look at California's Regional Health Information Organizations - JANUARY 2019
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Promise and Pitfalls: A Look at California’s Regional Health Information Organizations JANUARY 2019
Contents
About the Author 3 Introduction
Walter Sujansky, MD, PhD is the principal consul-
4 What Is an HIO?
tant at Sujansky & Associates, a California-based
consulting firm that specializes in the analysis 6 Types of HIOs
and design of EHRs, disease registries, and solu- 1. Regional
tions for health information exchange.
2. Enterprise or Private
3. EHR Systems That Enable Data Exchange
Acknowledgment
4. National Vendor-Sponsored
The author thanks the many HIO leaders and
other experts who provided valuable insights 5. HIOs That Connect HIOs
and data used in this report. Thanks also to 6. Niche Commercial Data-Exchange Services
Ross Martin of 360 Degree Insights and Melissa
Schoen of Schoen Consulting who helped with 7 High-Value Use Cases
the research and interview processes.
10 Current Challenges and Potential Paths Forward
About the Foundation 14 Types of Entities That May Participate in
The California Health Care Foundation is Regional HIOs
dedicated to advancing meaningful, measur-
17 Snapshot of Nine California Regional HIOs
able improvements in the way the health care
delivery system provides care to the people of 27 How Regional Market Dynamics Shape the Role
California, particularly those with low incomes of Regional HIOs
and those whose needs are not well served by Key Factors
the status quo. We work to ensure that people
Case Studies: Real-World Implications of Regional Market
have access to the care they need, when they
Dynamics on HIO Strength
need it, at a price they can afford.
29 Looking Ahead: Policy and Technology Trends
CHCF informs policymakers and industry lead-
to Watch
ers, invests in ideas and innovations, and
New HITECH Funds on the Horizon for California’s
connects with changemakers to create a more
Regional HIOs
responsive, patient-centered health care system.
The Potential of TEFCA
For more information, visit www.chcf.org. Fast Healthcare Interoperability Resources (FHIR)
Blockchain
Consumer-Mediated Health Information Exchange
31 Conclusion
32 Endnotes
California Health Care Foundation 2Introduction Some providers participated in efforts to create nonprofit
alternatives to private data-exchange networks, known
E
ach time a person comes in contact with a health as community-based or regional HIOs, and at least nine
care or social service entity, some amount of new such entities operate across various parts of the state
data about that person is created. It could be as today. Participation in these networks, however, has
simple as their current weight or employment status, or been variable and, in many regions, has not yet reached
as complex as a summary of a two-week hospital stay. the critical mass needed to provide maximal value and
All too often, entities must share in the care of a patient achieve financial self-sustainability.
without actually being able to share much of the valu-
able data they hold about that patient. The inability to At the same time, the EHR vendor market has been
exchange information can result in care rife with some of consolidating, with fewer vendors serving an increasing
the industry’s worst flaws, including wasteful spending, proportion of provider organizations in the state. Certain
poor coordination, and reactive rather than preventive of these vendors have created capabilities to enable
care. This report examines the various types of health robust data sharing among the customers of their own
information exchange (HIE) resources available to products, and also collaborated with each other to create
provider organizations in California, the value that stake- basic data-sharing networks across their products. These
holders are seeking to realize from such resources, and developments have created new avenues for interopera-
the specific role of nonprofit regional health information bility among the provider organizations using EHRs from
organizations (HIOs) within this landscape. these largest of vendors. However, they have also further
marginalized provider organizations that continue to use
Government and private enterprise have both recog- EHRs not yet participating in these vendor-based data-
nized the value of improving the ability of entities inside sharing networks or using older versions of EHRs that
and outside of the health care system to easily exchange do not have these data-sharing features. In many cases,
data that could inform patient care. On the government these providers, especially in the outpatient setting,
side, initiatives and incentives to promote the exchange comprise smaller, independent physicians and commu-
of health information have ranged from sweeping federal nity clinics that serve the safety-net population.
efforts to more limited local ones. On the federal level,
the Health Information Technology for Economic and Hence, for independent providers and safety-net clinics,
Clinical Health (HITECH) Act, passed in 2009, has been nonprofit regional HIOs remain an important means to
one of the most influential legislative efforts. It has offered connect and exchange data with collaborators in their
billions of dollars in financial incentives focused on two communities. Because they are community-run and aim
primary goals: first, increasing adoption of electronic to achieve total regional connectivity through inclusivity,
health record (EHR) technologies; and second, enabling regional HIOs offer a healthy counterbalance to trends
entities to share this newly created wealth of electronic in the private market. They guard against any one EHR
health information through the creation of HIOs. vendor or other corporate entity gaining too much con-
trol over vital data-exchange capabilities. They are also
In California, EHR adoption flourished uniformly, while especially well suited to meet the needs of safety-net
the growth of HIOs was more fragmented. State gov- patients and the providers who care for them. For exam-
ernment efforts to standardize and coordinate HIO ple, a regional HIO can include nontraditional service
development across the large California marketplace providers, such as housing agencies or substance-use
were largely superseded by local market dynamics and treatment facilities, that are vital to the well-being of
development trajectories. Parts of the California provider vulnerable populations but are otherwise excluded
market are dominated by large private health systems, from data exchange occurring via EHRs or within private
many of which could afford to purchase robust EHR health systems. Also, the nonprofit nature of regional
systems and develop private, exclusive HIOs to enable HIOs fosters collaboration and communication among
the exchange of data within their health systems. Many members of competing health systems and EHRs that
smaller provider entities, often members of the safety- private-market forces might otherwise inhibit. This col-
net or independent physician communities, were left out laboration is especially critical for the care of safety-net
of the more robust EHR and private HIOs and, as a result, patients, whose frequent use of emergency services1
often lacked early access to data-exchange capabilities. and specialty care referrals2 makes them more likely to
Promise and Pitfalls: A Look at California’s Regional Health Information Organizations 3see providers belonging to multiple health systems and Technical Components
using multiple EHRs. $$ Implemented data interfaces. The HIO’s means
of sending and receiving patient data; sometimes
While regional HIOs have come a long way in California includes user-interface features integrated within the
since the first one was founded in Santa Cruz in 1996, existing EHR systems of participating enterprises.
they have a long road still to travel before they fully real-
ize their potential to help create more connected and $$ Master patient index (usually). Consolidates patient
coordinated care systems within the state. Regional HIOs demographic information and unique identifiers
currently touch an estimated 22 million lives in the state, across participating enterprises for the purpose of
but only about half of California’s hospitals participate, matching a person’s clinical information held by
and 23 of California’s 58 counties still lack any significant different providers.
regional HIO presence. Many regional HIOs are strug- $$ Record-locator service (sometimes). Tracks the pres-
gling to find sustainable financial footing and to prove ence and location of specific patients’ data among
their value in the face of well-funded private alternatives. the participating enterprises.
Investing in their success offers a tangible path to tack-
ling the fragmentation in California’s health care system, $$ Patient-data repository (sometimes). Centrally
which remains a persistent source of frustrations, ineffi- aggregates, normalizes, and stores patient data
ciencies, and disparities. submitted by participating enterprises. Many HIOs,
however, just transmit patient data from point A to
point B and do not maintain a persisted copy of
the data.
What Is an HIO? $$ Data-sharing applications (usually). Provide vari-
In general, health information exchange organiza- ous functions, including search, document retrieval,
tions, also known as HIOs, are entities that facilitate the alerts, and data analysis, for the patient data that are
exchange of patient health information among the enter- accessible via the HIO. The most commonly included
prises comprising a health care delivery system. They application is a web-based portal for the search and/
can be either community-based and nonprofit, known in or retrieval of patient documents. Other applications
California as regional HIOs, or owned and operated by a may include a subscription and routing mechanism
private enterprise. for event notifications (e.g., inpatient admissions) or
a bulk data-export capability to populate analytical
databases and population-health tools.
Components of HIOs
No two HIOs are exactly alike, but they typically have sim-
ilar organizational and technical components to enable
the sharing of patient data among their participants.
Organizational Components
$$ Documented data-exchange standards. Agreed-
upon formats for the exchange of health information
that all participating enterprises will support.
$$ Participation agreement. Formalized relationship
between the HIO and the enterprises that participate
in it, including payment terms and legal obligations.
$$ Data-use agreement. Agreed-upon allowed uses
of data received via the HIO — for example, limiting
use to treatment purposes or prohibiting the bulk
aggregation of data for insurance-contracting pur-
poses.
California Health Care Foundation 4Distinct Technology Models
Although HIOs share many components, a key distinction among many of them lies in the technology models that
underlie their data infrastructures. The technology model that an HIO chooses fundamentally shapes how it collects,
organizes, and exchanges its data, and therefore what use cases it can offer its members. There are three commonly
used technology models: federated, hybrid, and centralized models.
Centralized Model BENEFITS
The centralized model operates like a hub and spoke $$ Quickly scalable
whereby data are physically aggregated and managed $$ Lower cost to implement
centrally. An HIO is responsible for operating the cen-
tralized technology and making that clinical information CONSTRAINTS
available to HIO participants through it for permitted $$ Limited potential for data consolidation and analysis
purposes agreed to by those participants.
$$ Lower likelihood of matching patients’ data between
BENEFIT organizations
$$ Rich set of aggregated and consolidated patient
data, enabling more analytical use cases Hybrid Model
The hybrid model is similar to the federated model in
CONSTRAINTS that it mostly relies on legal and governance agree-
$$ Difficult to normalize and standardize data ments, but it has a thin layer of technology that
$$ More difficult to scale centralizes some patient data, like identities and record-
locator services. This thin layer of technology and
$$ Requires greater trust among participating members
centralized data storage serve to improve the coordina-
tion of data exchange.
Federated Model
In the federated model, data are stored and man- BENEFIT
aged by a distributed network of HIO members. These $$ More scalable than fully centralized model
peer organizations adopt standards and processes for
sharing information under a common legal agreement CONSTRAINT
among participants. If each participant adopts the abil- $$ Limited potential for use cases that require
ity to communicate by those standards, participants can data analysis
query one another to search for information on com-
mon patients without relying on any central technology
operator.
Note: For a more detailed comparison of these technical models, refer to Douglas B. McCarthy et al., “Learning from Health Information Exchange
Technical Architecture and Implementation in Seven Beacon Communities,” eGEMs (Generating Evidence & Methods to improve patient outcomes)
2, no. 1 (May 5, 2014), accessed December 14, 2018, www.ncbi.nlm.nih.gov (PDF).
Promise and Pitfalls: A Look at California’s Regional Health Information Organizations 5Types of HIOs accountable care organization (ACO). While these HIOs
can include many different participants, such as hospitals,
Generally, any entity facilitating some form of HIE activity, clinics, laboratories, and even payers, they are typically
regardless of the underlying technology or governance open only to organizations contractually partnered with
model it uses, can be considered an HIO. Such enti- the business entity that built the HIO. That purchasing
ties can generally be grouped into one of the following entity has sole control over the exchange’s data and
categories: available features.
Examples of enterprise or private HIOs in California
1. Regional include those operated by Kaiser Permanente, Sharp
Regional HIOs are distinct from other HIE resources in HealthCare, Dignity Health, and Monarch HealthCare.
that they (1) serve defined geographical regions, ranging
from a single county to an entire state; (2) are open to any While private HIOs are often perceived as presenting
health care enterprise that serves patients in a region, fewer legal and business liabilities than regional HIOs,
regardless of its business affiliations or choice of infor- they do have limitations. For example, provider organi-
mation technology vendors; and (3) are nonprofit entities zations can exchange data only with other organizations
primarily concerned with improving the quality and cost- that are part of the same business entity served by the
effectiveness of health care in a region through greater private HIO. Data generated at “outside” provider orga-
availability and sharing of patients’ health information. nizations — at which a patient currently “in network” may
have been seen in the past or in an emergency — are
Examples of regional HIOs in California include Manifest therefore not available. Furthermore, business entities
MedEx, Santa Cruz HIO, and North Coast Health must finance the entirety of the private HIO licensing and
Improvement and Information Network. operations and cannot share those costs with outside
organizations that might otherwise be part of and con-
While regional HIOs can offer a healthy counterbalance tribute financially to a more inclusive exchange, such as
to more exclusive private-market options for exchanging a regional HIO.
data, they do face unique constraints. Chief among them
is financial sustainability. In California, most regional HIOs
rely on a mix of subscription fees and philanthropic or
3. EHR Systems That Enable Data
government grants. If one or more large hospitals in a Exchange
given region opts to build a private HIE network instead When a single EHR system has been widely adopted in
of participating in the regional HIO, then that HIO may a particular region and it contains robust data-exchange
lose critical subscription revenues and may be forced to features, that EHR can act in some ways like an HIO. Data
raise rates on smaller entities. In turn, those entities may exchanged through the EHR has the advantage of always
opt out of the regional HIO themselves, due to budget- being integrated directly into the EHR user interface.
ary constraints. Ultimately, the HIO may become overly Provider organizations can also import patient records
dependent on grant funding, the long-term availabil- from other facilities that use the same EHR and have
ity of which can be unpredictable. Another challenge enabled its data-exchange features.
for regional HIOs is that many provide access to data
primarily through a web portal rather than via full EHR By far the most prominent example in the state is Epic
integration. EHR integration is more costly for regional and its Care Everywhere network. The Epic EHR is widely
HIOs to implement, but far more attractive for busy pro- used in California by many hospital systems (e.g., Sutter,
vider users. Providence, Memorial Care), academic medical cen-
ters (e.g., Stanford, UCSF, UC San Diego, UCLA), IDNs
(e.g., Kaiser Permanente, Scripps Health, Cedars-Sinai),
2. Enterprise or Private and community clinic networks (e.g., OCHIN [Oregon
An enterprise HIO is built specifically to meet both the Community Health Information Network], Community
financial and clinical objectives of a distinct business Medical Centers).
entity such as a hospital system, independent physician
association (IPA), integrated delivery network (IDN), or
California Health Care Foundation 6On the downside, provider organizations cannot access
patient records from facilities that use other EHRs or
6. Niche Commercial Data-Exchange
have not enabled their EHR’s data-exchange features. Services
Furthermore, there is no centralization or curation of There are numerous commercial, for-profit companies
patient identities, so matching rates can be poor and that provide specific data-exchange services to medi-
depend on the quality of patient demographic informa- cal communities. Services tend to focus on a particular
tion provided by the two facilities attempting to exchange aspect of care, such as the sharing of controlled substance
data. EHRs also often lack the more robust features that prescribing data across hospital emergency departments
certain regional and private HIE networks provide, such (EDs), the sharing of patients’ Physician Orders for Life-
as encounter notifications, referral management, results Sustaining Treatment (POLST) directives, or the sharing
delivery (i.e., “pushing” patient data), or the ability to of care plans for care coordination.
aggregate and analyze patient data in bulk across mul-
tiple EHR instances. Examples of vendors providing such services include
Collective Medical Technologies, ACT.md, and Vynca.
4. National Vendor-Sponsored
This type of HIO is funded and operated by a consor-
tium of commercial vendors who have the shared goal of High-Value Use Cases
enabling interoperability among their respective health From high hospital readmission rates to the costly order-
information technology (IT) products, such as EHRs. ing of duplicative tests, there are many major pain points
Access to the network is typically tightly integrated into in health care that persist at least in part because pro-
each vendor’s respective IT product and available to its viders are unable to easily exchange information with
customers with minimal custom development or configu- one another about the patients they share. The ability
ration. Since these networks’ members tend to be EHR to exchange information will only grow more important
vendors, they present benefits (data integrated directly as the United States health care system increasingly
into the EHR) and challenges (less robust features, inabil- embraces value-based payment models. These new
ity to access data from facilities that have not joined the models will require payers and providers to better under-
network or use a nonmember EHR) similar to the afore- stand which of their patients are at risk for poor outcomes
mentioned individual EHRs offering HIO-like exchange. and then effectively target resources, from both within
and outside of the traditional health care system, to
Examples of national vendor-sponsored HIOs include prevent those outcomes. That shift will require many
Carequality, whose network is available to users of Epic, new capabilities, including robust data collection and
athenahealth, eClinicalWorks, and NextGen Healthcare analysis, and proactive coordination with nontraditional
EHRs; CommonWell Health Alliance, whose network is entities that have an outsized effect on health, such as
available to users of Cerner, Meditech, Evident, athena- food banks and housing authorities.
health, eClinicalWorks, and Greenway Health EHRs; and
DirectTrust. The good news is that research has shown that HIOs can
help providers meet these new expectations. Substantial
HIO adoption has been associated in some studies with a
5. HIOs That Connect HIOs lower rate of hospital readmissions, fewer ED admissions,
These HIOs serve as “gateways” between other existing fewer duplicated procedures, improved medication rec-
networks, including enterprise HIOs and regional HIOs. onciliation, greater immunization and health record
They provide services to normalize searches for and completeness, better identification of drug-seeking
delivery of patient data across distinct HIOs, which can behaviors, and reduced total cost of care.3 Whether
have differing data formats and standards. California will eventually reap similar benefits depends
on both increasing HIO participation rates and strength-
Examples nationwide include eHealth Exchange and ening the capabilities of the HIOs to ensure they deliver
Strategic Health Information Exchange Collaborative the utmost value.
(SHIEC).
Promise and Pitfalls: A Look at California’s Regional Health Information Organizations 7The use cases outlined in Table 1 comprise the six areas members. Although the different regional HIOs are sup-
in which regional HIOs in California are focusing the porting these use cases to varying degrees today, most
majority of their efforts related to enhancing their capa- have acknowledged and prioritized them as high-value
bilities and ultimately delivering greater value to their goals to pursue.
Table 1. Six Use Cases of Regional HIOs in California, continued
USE CASE / DESCRIPTION CLINICAL VALUE BUSINESS VALUE DATA REQUIRED
Longitudinal patient record. HIOs $$ Reduces potential for $$ Enables provider entities $$ Medication allergies;
can provide access to patients’ health errors caused by poor that bear financial risk results of past labora-
information originating from numer- information about aller- to avoid poor clinical tory, imaging, and other
ous sites of care either by aggregating gies, prior treatments, outcomes and waste- diagnostic procedures;
data from across sites into a single and other informa- ful utilization, such as previously diagnosed
physical patient record or by enabling tion critical to clinical redundant testing. and treated disorders;
retrieval of data on demand from decisions. currently or previously
such sites, effectively creating a single taken medications; and
$$ Increases clinicians’
virtual patient record. sites and frequencies
chances of making
of previous medical
well-informed and
encounters
evidence-based care
decisions.
Real-time event notification. HIOs $$ Enables proactive $$ Enables stakeholders to $$ Relevant health care
can establish “publish/subscribe” intervention, timely divert patients to more events warranting
infrastructures, in which certain clini- outpatient follow-up cost-effective sites of notification may include
cal events are always reported to the after ED visits and care and to prevent ED visits, hospital
HIO, which then forwards information hospital discharges, and costly avoidable hospital admissions, hospital
about the events to parties that have tracking of patients’ admissions by interven- discharges, and appoint-
expressed interest in being notified attendance at important ing proactively and ments for specialist
of them. This mechanism can be specialist visits. arranging alternative visits.
configured on an event-specific and care arrangements. $$ Hospitals provide the
patient-specific basis. For example, data for ED visits, hospi-
the care-management team at a health tal admissions, and
insurer could be notified each time hospital discharges,
a high-risk patient is seen in an ED, typically via HL7 ADT
or a primary care physician could be (“admit/discharge/
notified upon the discharge of one of transfer”) messages. The
her patients from the hospital. referring and/or consult-
ing physician provide(s)
the data for scheduled
specialist visits.
Results reporting and document $$ Recovers time other- $$ Saves time and money $$ Test results and clini-
delivery to ambulatory providers. wise spent by clinical spent on the staff and cal documents from
An HIO can provide a central “hub” and administrative staff technologies required hospitals sent via HL7
for receiving, translating, and forward- translating, faxing, and to maintain numerous interfaces to outpatient
ing diagnostic results and clinical receiving diagnostic electronic data inter- providers, who receive
documents between hospitals and results and clinical faces to different trading and integrate the data
outpatient providers. In this model, documents. partners. into their EHRs
each hospital and outpatient provider $$ Moves test results and
need only maintain a single interface clinical documents
to the hub, which translates the data that otherwise exist in
formats appropriately to accommo- fragmented faxes into
date all senders and recipients. This the EHR, allowing them
approach replaces the highly ineffi- to more easily inform
cient and costly process of having each clinical decisionmaking.
hospital and outpatient organization
within a given health care ecosystem
maintain numerous electronic data
interfaces and perform many separate
data translations.
California Health Care Foundation 8Table 1. Six Use Cases of Regional HIOs in California, continued
USE CASE / DESCRIPTION CLINICAL VALUE BUSINESS VALUE DATA REQUIRED
Data submission to public health $$ Ensures more complete $$ Saves time and money $$ Diagnosis, immuniza-
agencies. For provider organizations records of patients’ spent monitoring test tion, and other clinical
that are already submitting lab results immunizations and results for those that data required by health
and immunization data via some reportable diseases, require reporting to agencies and submitted
means of data exchange, the HIO facilitating and improv- public agencies. by hospitals and outpa-
could analyze, appropriately format, ing their future care. tient providers
$$ Saves time and money
and transmit these data to the public spent building and $$ In California, the
health department on behalf of the maintaining the separate CalREDIE (reportable
provider organizations. This model interfaces required to diseases) and CAIR2
obviates the need for provider organi- complete electronic (immunizations) public
zations to build separate interfaces submissions, or spent health registries receive,
to public health agencies and can manually submitting via store, and process
automatically monitor all test results to web portals. these data.
identify and transmit those that require
reporting.
Data aggregation for population- $$ Enables proactive identi- $$ Enables proactive identi- $$ Clinical data in longitu-
health and utilization-management fication of patients at fication of patients at dinal patient records;
analytics. HIOs with data connections risk for certain poor risk for costly and avoid- claims records from
to numerous health care providers outcomes and the able outcomes and the health insurers
can receive, integrate, and normalize proper allocation of care proper allocation of care
clinical data pertaining to individual management resources management resources
patients in a physical data repository. needed to avoid those needed to avoid those
These data can then be made available outcomes. outcomes.
for analysis to interested stakeholders, $$ Enables the proac- $$ Enables retrospec-
either by exporting the consolidated tive identification and tive analysis of care
records for all applicable patients correction of patient outcomes and costs
to the stakeholders, or by providing care not aligned across a population to
analytical software to process the data with evidence-based identify patterns associ-
directly on the data repository. practices. ated with higher-value
care.
Coordinating with nonmedical $$ Enables care managers $$ Better targets resources, $$ Data on behavioral
providers to address patients’ social to better facilitate care both medical and social, health care, substance
needs. An HIO that is coordinating coordination and follow to avoid more costly and use disorder treat-
care between clinical provider organi- up on necessary refer- avoidable outcomes, ment, and use of social
zations and delivering longitudinal rals for both social and such as hospitalization. services — contrib-
patient records, event notifications, medical needs. $$ Better tracks and uted by hospitals,
and data aggregation can facilitate outpatient clinics
$$ Enables providers to measures the cost-effec-
“whole person care” by including data (including community
more effectively screen tiveness of social service
on behavioral health care, substance- health clinics), county
for and address the referrals with respect to
use treatment, and use of social mental health facilities,
social factors that can medical utilization.
services. An HIO can add additional substance use disor-
harm a person’s health.
value by providing built-in tools for der treatment centers,
care coordination, referral manage- homeless shelters, food-
ment, and patient tracking. assistance agencies,
employment agencies,
and corrections facilities
Notes: CAIR2 is California Immunization Registry; CalREDIE is California Reportable Disease Information Exchange; HL7 is Health Level Seven International.
Promise and Pitfalls: A Look at California’s Regional Health Information Organizations 9regional HIOs include the nearly 200 California hospitals
Current Challenges and not currently participating in a regional HIO, other poten-
Potential Paths Forward tial participant entities, vendors whose technologies
could improve HIO capabilities, state and federal officials
While community-based regional HIOs have shown who can clarify and revise regulations to be more sup-
promise in other parts of the country, their potential portive of data exchange, and philanthropies and other
has yet to be fully realized in California. Regional HIOs funders that can help remove up-front financial barriers
can certainly do more work to prove their financial and to HIOs’ achievement of greater scale. Table 2 describes
clinical value, especially in the face of steep competition some of the key obstacles that regional HIOs, together
from private-market alternatives, but they alone cannot with other key stakeholders, must navigate in order to
close California’s data-connectivity gap. Other stakehold- continue progressing toward a more connected, coordi-
ers critical to the long-term success and sustainability of nated system of care throughout the state.
Table 2. Key Challenges and Potential Paths Forward for Regional HIOs
Limited Participation by Commercial Health Systems
CHALLENGE POTENTIAL PATHS FORWARD
For executives at commercial hospital systems and health $$ HIOs can add additional services that provider organizations
systems, the business case for participating in regional HIOs is need and cannot obtain elsewhere, such as encounter notifi-
often unclear. These organizations are increasingly using data- cation, data aggregation, referral management, etc.
exchange services provided through their EHR vendors (such
$$ Reduce the subscription fees charged to participating
as Carequality, CommonWell Health Alliance, and Epic Care
provider organizations whether through state or philan-
Everywhere) and investing in private HIE solutions to achieve
thropic subsidies, the expansion of the number of HIO
the levels of clinical integration that they require, rather than
participants that pay subscription fees, and/or a reduction in
participating in regional HIOs. In this environment, the value
the overall operational costs of the HIO (perhaps by sharing
proposition of regional HIOs is generally decreasing and
the technology platform or staffing with other HIOs).
remains greatest only in fragmented medical communities,
where significant provider consolidation has not yet occurred $$ Mandate or incentivize participation in a regional HIO via
(in California, typically rural communities). As commercial directives issued either by the state or payers.
hospitals and health systems are often major contributors
of funding to regional HIOs, this trend may reduce available
funding over time if regional HIOs are not able to provide
additional services of value to these organizations or if partici-
pation in regional HIOs is not somehow mandated.
Cumbersome Provider Workflow Due to Limited EHR Integration
CHALLENGE POTENTIAL PATHS FORWARD
Access to the comprehensive patient record is often available $$ Whenever possible, regional HIOs should aim to integrate
to users of regional HIOs only via a web-based portal applica- their services directly into the EHR products used by HIO
tion, which requires clinicians to leave their EHR tool, log in to participants. This is especially true for ambulatory EHR
a different application, and reenter the patient’s demographic products, for which the integration process is often more
data before accessing the patient’s record. When a separate difficult and less well supported by the provider organiza-
application is the only means for accessing HIO data, actual tions that use them.
use of the HIO is significantly diminished. While integration of
$$ At the same time, HIOs would benefit from an attempt
HIO services directly into the EHR is preferred, it also tends to
to standardize the APIs and other integration features of
be far more costly.
EHR products, so that they more consistently support the
existing and envisioned functionalities of HIOs. A working
group of EHR vendors and HIOs could convene to address
this issue, possibly in collaboration with the HIMSS EHR
Association and the Strategic HIE Collaborative (SHIEC),
respectively, or similar bodies.
California Health Care Foundation 10Transition to Centralized Data Storage Models
CHALLENGE POTENTIAL PATHS FORWARD
Most regional HIOs have historically not physically aggregated $$ HIOs could develop centralized data repositories for aggre-
the clinical data to which they provide access. Typically, much gating clinical data submitted by participants. If the HIO’s
of the data remains stored locally at participating provider core technology does not support this function, a separate
organizations and is retrieved only on demand in the context data-repository technology can be procured and integrated
of a specific patient search. HIOs are now more aggressively with the core technology. This data repository should
pursuing the strategy of physically aggregating and storing include a standardized/normalized data model that supports
patient data within their own data repositories, as this allows relevant data analytics.
them to provide additional data-delivery and analytic services
$$ HIO participants could be incentivized to contribute their
and to differentiate themselves from the data-exchange
data to the centralized repository. Incentives could include
capabilities that are increasingly built into EHR products.
free data-normalization services or discounts on subscrip-
This transition, however, requires HIOs to upgrade their
tion fees.
technologies, their data-normalization capabilities, and their
governance documents. Also, not all participants in HIOs wish $$ HIOs should seek to make participants feel as comfort-
to submit all of their clinical data to an external, centralized able contributing their data to the centralized repository
repository due to privacy or data-ownership concerns. Hence, as possible. Steps may include (a) requiring only a subset
it may be time-consuming and/or not always possible for HIOs of structured clinical data initially, such as encounter dates,
to fully transition to this model of centralized data storage. primary diagnoses, lab results, prescribed medications,
performed procedures, blood pressure, and weight; (b)
implementing robust security and access controls on the
aggregated data to minimize risk of unauthorized disclo-
sure, as well as performing formal penetration testing on
the data repository; and (c) developing specific policies
regarding access to data in the repository and formalizing
these policies in all participation agreements such that they
cannot be changed without each participant’s consent.
Normalizing Data in Centralized Models
CHALLENGE POTENTIAL PATHS FORWARD
As noted above, HIOs are increasingly seeking to provide $$ Regional HIOs can engage third-party data-cleansing and
additional value by physically aggregating data from their data-normalization firms, such as Diameter Health, InteropX,
multiple participants in central data repositories. Centralized and Redox.
aggregation allows HIOs to consolidate and deliver relevant
$$ Stakeholders can lobby federal regulators to increase the
data in batch mode to payers, ACOs, and other participants
level of data standardization required of EHR vendors, clini-
for analysis. It also allows HIOs to, themselves, perform data
cal laboratories, and other contributors of data to HIOs.
analytics for risk stratification, chronic disease management,
and quality improvement. However, data aggregation, consoli-
dation, and analysis require that heterogeneous clinical data
from multiple sources be standardized and normalized, which
remains a complex and time-consuming task. For example, lab
results from hospitals are often represented using the hospi-
tals’ own coding systems, rather than the standardized LOINC
coding system, necessitating code mapping and translation
when the data are aggregated. Also, the representation and
completeness of clinical data transmitted using the C-CDA
document standard can still vary considerably depending on
the specific hospital or ambulatory provider that generates
these data.
Promise and Pitfalls: A Look at California’s Regional Health Information Organizations 11Matching Patient Data in Centralized Models
CHALLENGE POTENTIAL PATHS FORWARD
Correctly matching data received from different organiza- $$ Outside experts or HIOs themselves could more rigor-
tions to the appropriate patient remains a major challenge ously study the performance of HIOs’ MPI technologies and
for not just HIOs, but many payers and providers as well. identify any weaknesses and their root causes.
Although the master patient index (MPI) technologies used by
$$ Technology vendors, such as Verato, can continue honing
HIOs have improved, certain HIOs have reported that wholly
their solutions for improving patient-matching performance
reliable patient matching still requires a considerable degree
and consider partnering with regional HIOs as customers.
of manual curation, i.e., manual review of potential duplicate
records or uncertain match results. In the absence of sufficient $$ State officials who oversee the CAIR2 and CURES databases
manual effort devoted to this task, multiple identities may exist could more rigorously analyze the patient-matching
for individual patients within an MPI, which results in fragmen- techniques used and the accuracy of results delivered by
tation of these patients’ data and incorrect or incomplete their databases. They could identify any weaknesses and
results in response to data queries. Such errors undermine work to resolve them in order to improve the match rate and
clinicians’ confidence in the HIO’s data and can reduce their reduce the likelihood of incorrect matches. The state may
use of the HIO. A similar patient-matching problem exists consider procuring a more advanced matching technology.
when clinicians access the state’s immunization registry and
prescription drug-monitoring program (i.e., CURES) database.
This problem undermines the value being provided by HIOs
that directly interface to these state databases as a conve-
nience for their users.
Need for Centralized Consent Management
CHALLENGE POTENTIAL PATHS FORWARD
Currently, a patient’s consent to have her data shared via $$ Regional HIOs could implement centralized consent-
an HIO is collected and stored separately by each provider management systems that can be populated by all provider
organization participating in the HIO. Each participant organi- organizations participating in a given HIO and accessed
zation’s local interface is configured accordingly, so that by the HIO’s technology at the time that data requests
only the data of patients who have consented to participate are issued. Such a technology could, for example, enable
in the HIO are made available in response to requests from patients to specify global consent preferences regarding
other organizations. This model makes it difficult for HIOs to HIO data access across all their health care provider organi-
ascertain whether the absence of a patient’s data in response zations, as well as enable an HIO to cross-reference its MPI
to a request is because there are no data for that patient at to its consent records to identify and contact patients who
the responding organization or because the patient has not have not consented to sharing some or all of their data.
consented to have her data at that organization shared with
$$ Regulators could also further clarify and align statutes and
the given HIO. This leads to situations, for example, in which
regulations affecting patient privacy to make centralized
a provider knows that a patient has received services at an
consent management simpler. As outlined in the challenge
organization, but retrieves no data on that patient from that
below regarding privacy regulations, the nuances and
organization, leaving uncertainty as to whether the cause is a
discrepancies that exist among the state and federal regula-
consent issue or an error in the HIO (for example, a patient-
tions are incredibly complex.
matching error). Such uncertainty can undermine confidence
in the HIO’s data among provider organizations and reduce
their use of the HIO.
Need for Referral-Management Capabilities for Population-Health Management
CHALLENGE POTENTIAL PATH FORWARD
Most HIOs do not yet provide referral-management and HIOs could implement closed-loop referral-management
care-management tools. Such applications enable referral capabilities that are tightly integrated with their core
requests to be made and consult notes to be delivered via technologies and, if possible, with the EHRs of participating
the HIO technology, as well as oversight to be provided for organizations. If the HIO’s core technology does not support
the referral process (e.g., referral authorization, appointment this function, a separate referral-management technology
reminders, transportation assistance). Certain commercial could be procured and integrated. Available third-party
vendors offer third-party referral-management solutions, commercial products include ACT.md, Netsmart, and CrossTx.
but they require technical integration with the HIO’s core
technology and may entail the use of separate interfaces or
applications by HIO participants.
California Health Care Foundation 12Need for Robust Real-Time Encounter-Notification Capability
CHALLENGE POTENTIAL PATH FORWARD
Regional HIOs are just beginning to provide real-time event- HIOs could develop or procure publish/subscribe mechanisms
notification services. However, the necessary real-time HL7 and patient-attribution data for routing event notifications to
ADT data submissions from all hospitals and referring physi- appropriate recipients. Third-party commercial vendors such
cians are generally not yet in place, nor are the mechanisms as Audacious Inquiry and Collective Medical Technologies
for stakeholders to subscribe to and receive alerts regard- provide such services.
ing events of interest. One key challenge in implementing
this feature is maintaining an up-to-date mapping between
patients and the providers and insurers who are interested in
and authorized to receive relevant alerts about them.
Privacy Regulations Inhibiting Behavioral Health and Nonclinical Data Sharing
CHALLENGE POTENTIAL PATHS FORWARD
HIPAA and state regulations impose additional consent $$ To address restrictions on the sharing of mental health and
requirements for the sharing of mental health and substance- substance-use data, HIOs and the participating provider
use data by provider organizations. These regulations typically organizations that serve patients with those needs could
require an affirmative (“opt-in”) consent model for these collaborate to better streamline the process of consent-
specific types of data, even when the default consent model ing patients specifically to share these types of data.
for an HIO is “opt-out.” The likelihood of an HIO obtaining Streamlining would primarily require workflow and policy
that much more burdensome level of consent from all partici- changes at those provider organizations but could also
pants is far lower. This dynamic can result in significant gaps in involve HIOs implementing centralized consent-manage-
the mental health and substance-use data available via HIOs. ment systems (see above).
HIPAA also prohibits the sharing of protected health informa-
$$ To address the HIPAA proscriptions on the sharing of PHI
tion with organizations that are not “covered entities” in the
with noncovered entities, HIOs could explore the creation
absence of explicit patient consent. Such organizations include
of business-associate agreements (BAAs) with social service
various social service agencies, such as housing agencies,
agencies, which may allow data sharing without explicit
employment agencies, food-assistance agencies, and correc-
patient consent. Given that provider organizations already
tional facilities, whose data are relevant to coordinating “whole
have BAAs in place with their HIOs, this approach may
person care” to underserved populations.
require also modifying those BAAs. Stakeholders may also
consider lobbying federal regulators for additional clarity on
these legal complexities.
Notes: API is application programming interface; CAIR2 is California Immunization Registry; C-CDA is Consolidated-Clinical Document Architecture; CURES
is Controlled Substance Utilization Review and Evaluation System; HIMSS is Healthcare Information and Management Systems Society; HIPAA is Health
Information Portability and Accountability Act; HL7 is Health Level Seven International; LOINC is Logical Observation Identifiers Names and Codes; PHI is
protected health information.
Promise and Pitfalls: A Look at California’s Regional Health Information Organizations 13Types of Entities That regional HIO. Each entity will weigh the benefits of partic-
ipating against the costs of doing so. It will also examine
May Participate in the types of data its regional HIO offers and expects
Regional HIOs members to contribute — and whether those data align
with the entity’s needs and capabilities. Ultimately, all of
Nearly every type of health care entity, no matter how these factors amount to a question of value: Compared
small or how specialized, could improve the care it offers to other data-exchange solutions available to a given
patients by participating in data exchange. However, due entity, does its regional HIO meet enough unique needs
to a host of business, financial, and technological rea- to justify the cost and effort required to join?
sons, not every entity is equally likely to participate in its
Table 3. HIO Participation Considerations for Various Health Care Entities, continued
PARTICIPATION DATA THE ENTITY MAY…
Reasons to participate Barriers to participation Contribute to the HIO Seek from the HIO
HIGH LIKELIHOOD OF PARTICIPATION
Private Hospitals
$$ Exchange clinical information $$ Most use major EHR platforms $$ Inpatient and ED $$ Clinical data contributed
with ambulatory centers as with built-in HIE capabilities admissions (ADT) by other hospitals
part of referral network via the national HIE networks. $$ Lab, radiology, and $$ Outpatient encounter
$$ Participation in risk-bearing or $$ The value of receiving data other results (HL7) notifications (ADT)
pay-for-performance contracts from ambulatory centers has $$ Structured encounter $$ Outpatient lab,
that require data exchange for been limited, especially when summary documents radiology, and
care coordination the number of ambulatory (C-CDA) other results
participants in the HIO is low.
$$ Especially high use among $$ Unstructured summary
EDs and outpatient clinics documents (e.g.,
within hospitals discharge summary)
Public Hospitals
$$ Participation in risk-bearing or $$ Costs associated with both $$ Same as private hospitals $$ Same as private hospitals
pay-for-performance contracts up-front IT integration work
that require data exchange for and ongoing subscription and
care coordination maintenance fees
$$ Less likely to benefit from the $$ The value of receiving data
private HIO resources avail- from ambulatory centers has
able to hospitals in larger been limited, especially when
systems the number of ambulatory
participants in the HIO is low.
Large Outpatient Providers (multispecialty, community health centers, IPAs)
$$ Participation in risk-bearing $$ Costs associated with both $$ Outpatient encounter $$ Notifications of hospital
or pay-for-performance up-front IT integration work notifications (ADT) and ED encounters
contracts that require data and ongoing subscription and $$ Outpatient lab, $$ Result data from hospi-
exchange for care coordina- maintenance fees radiology, and other tals, other outpatient
tion and population health $$ Alternatives for data results (HL7) providers, and lab/
$$ Especially need ED or exchange through participa- imaging centers
$$ Medication lists and
inpatient information from tion in private HIOs (e.g., in medication allergies $$ Outpatient medication
hospitals, including encounter IDNs, IPAs, or ACOs) lists
notifications and discharge $$ Immunizations and
$$ Lack of integration with the
summaries reportable diseases $$ Structured and
providers’ EHRs may make unstructured summary
access to HIO data cumber- $$ Structured encounter
documents from hospi-
some and time-consuming. summary documents
tals, EDs, and outpatient
(C-CDA)
providers
$$ Unstructured summary
$$ Immunization registry
documents (specialty
records
consult notes)
California Health Care Foundation 14Table 3. HIO Participation Considerations for Various Health Care Entities, continued
PARTICIPATION DATA THE ENTITY MAY…
Reasons to participate Barriers to participation Contribute to the HIO Seek from the HIO
MEDIUM LIKELIHOOD OF PARTICIPATION
Laboratory and Imaging Centers
$$ Provides a single interface $$ Costs associated with both $$ Lab results and $$ Lab and radiology orders
hub for delivering results to up-front IT integration work radiology reports
many providers and ongoing subscription $$ Radiology images
and maintenance fees
$$ Aggregates and delivers
results to disease registries, $$ Existing alternative channels
population-health programs, to deliver results to ordering
etc. providers (via dedicated
HL7 interfaces)
Payers (including county, state, and commercial plans)
$$ Contribute claims data to $$ Subscription fees charged $$ Claims data $$ Real-time notification
supplement missing clini- by HIOs of hospital, ED, and
$$ Membership and
cal data due to incomplete outpatient encounters
$$ Data sharing agreements PCP-assignment data
participation by provider can sometimes restrict payer $$ Structured clinical data to
organizations access to clinical data, reduc- drive population-health
$$ Access clinical data to ing the value of participation. and quality-measurement
facilitate population-health, activities
$$ Reluctance to share claims
care-coordination, quality, data or membership data
and pay-for-performance with competitors
initiatives
Small FQHCs, Community Health Clinics, and Small Physician Practices
$$ Participation in risk-bearing or $$ Costs associated with both $$ Same as large outpatient $$ Same as large outpatient
pay-for-performance contracts up-front IT integration work providers, although often providers
that require data exchange for and ongoing subscription limited because of costs
care coordination and maintenance fees and difficulties of EHR
integration
$$ More likely to use less $$ Lack of integration with the
expensive EHRs that do not providers’ EHRs may make
yet include access to other access to HIO data cumber-
vendor-centric HIE networks some and time-consuming.
$$ Less likely to be participating
in a private HIO through an
IDN, IPA, or ACO
EMS Providers
$$ Facilitate clinical care $$ Limited resources for $$ Clinical status during $$ Medication lists
during patient treatment technical integration of transport to ED, includ- $$ Medication allergies
and transport EMS information systems ing chief complaint, vital
with HIO signs, and acuity $$ Problem lists
$$ Prepare receiving ED for
patient arrival $$ Limited business drivers $$ POLST/DNR forms
for EMS integration
$$ Track patient outcomes
with HIOs
subsequent to transport
Promise and Pitfalls: A Look at California’s Regional Health Information Organizations 15Table 3. HIO Participation Considerations for Various Health Care Entities, continued
PARTICIPATION DATA THE ENTITY MAY…
Reasons to participate Barriers to participation Contribute to the HIO Seek from the HIO
LOW LIKELIHOOD OF PARTICIPATION
Urgent Care Centers
$$ Facilitate diagnosis and treat- $$ Costs associated with both $$ Outpatient encounter $$ Problem lists
ment up-front IT integration work notifications (ADT) $$ Medication lists
and ongoing subscription
$$ Assist in arranging appropri- $$ Lab results and radiol-
and maintenance fees $$ Medication allergies
ate follow-up care ogy reports for locally
$$ Urgent care centers unaffili- performed studies $$ Past lab results and
$$ Facilitate referrals to affiliated
ated with IDNs or ACOs may radiology images
provider organizations $$ Structured encounter
have little financial incentive Record of past inpatient
summary documents $$
$$ Participation in risk-bearing or to join an HIO. (C-CDA) and outpatient encoun-
pay-for-performance contracts ters, including specialists
that require data exchange for $$ Unstructured discharge
care coordination summaries
Long-Term Care (LTC) and Skilled Nursing Facilities (SNFs)
$$ Participation in risk-bearing or $$ Some do not yet have $$ Medication lists $$ Structured and unstruc-
pay-for-performance contracts sophisticated EHRs that can tured transition of care
$$ Problem lists
that require data exchange for interface with an HIO. documents from hospi-
care coordination and avoid- $$ Progress notes tals and EDs
$$ The EHRs that are used are
ance of readmissions Lab results and
different from those used $$
$$ Especially need ED or hospi- by hospitals and outpatient radiology reports
tal discharge information providers, and are not likely
for returning or incoming to have the interoperability
residents features required under the
meaningful use EHR certifica-
$$ Need to transmit patient data
tion program.
to hospitals for patient trans-
fers to the ED or inpatient $$ Initial funding provided
wards, to prevent readmis- under HITECH to assist HIO
sions, facilitate clinical care, onboarding did not include
and reduce length of stay LTC facilities and SNFs.
Social Service Agencies
$$ Enable county-driven initia- $$ Social service agencies are $$ Various social $$ Mental and physical
tives started through federal not covered entities under determinants of health, health problems
waiver programs, such as HIPAA regulations, so infor- including employment, $$ Treatment and appoint-
Whole Person Care Pilots or mation sharing from medical housing, and food- ment schedules (for
Health Homes, or other local providers requires explicit security status transport assistance)
service providers to coordi- (“opt-in”) patient consent.
nate social services with $$ Medi-Cal status and
medical services PCP assignment
Inpatient Mental Health and Substance-Use Treatment Facilities
$$ Exchange clinical information $$ Stringent and complex $$ Typically limited because $$ Medication lists
about shared patients restrictions on sharing of mental health data are $$ Problem lists
data related to mental health subject to additional
and substance use constrain state and federal restric-
ability to contribute data. tions on sharing, and
substance-use treatment
facilities must obtain
explicit patient consent
for any data sharing
Notes: C-CDA is consolidated-clinical document architecture; DNR is do not resuscitate; EMS is emergency medical services; FQHC is Federally Qualified
Health Center; HIPAA is Health Information Portability and Accountability Act; HL7 is Health Level Seven International; PCP is primary care provider.
California Health Care Foundation 16You can also read
