Chapter IV. Data to Support Work on Disparities (continued)
D. Firm Efforts to Collect Race and Ethnicity Data
1. Direct Support from the Collaborative
With a few exceptions, the Collaborative did not directly
support firms' interest in developing their own racial/ethnic data. The
exceptions involved the Collaborative's support to help firms learn more about Aetna's Web Portal Approach and HealthPartners' activities in collecting information in
their clinics. Almost universally, firms expressed respect for Aetna's initiative and its important influence on the industry. (HealthPartners' reliance
on the affiliated medical staff meant fewer firms appear to have viewed it as
applicable in their setting.) The Collaborative's response to firm requests to
learn about the Web Portal took time, but at the June 30, 2005, meeting of
firms' senior leaders, Aetna agreed to provide Collaborative participants with
a demonstration of the portal; the Aetna demonstration (as well as the
HealthPartners demonstration) took place via a Web call on October 20, 2005.
It is unclear why the Collaborative support organizations did
not do more to address the interest among some firms in primary data collection
on race and ethnicity. The support organizations' relative lack of emphasis on
data collection stands in strong contrast to RAND's active interest in
geocoding and surname analysis and CHCS/IHI's focus on pilot interventions. Of
course, participating firms have their own IT platforms and unique concerns and
may not have needed or wanted the support organizations to advise them on
internal systems. However, the support organizations could have helped the
Collaborative respond to some firms' expressed interest in help that might
enhance support for external policy change (perhaps in the form of uniform
standards and procedures) to face the internal challenges inherent in
race/ethnicity data collection. For example, several firms mentioned that
establishing a "safe harbor" could enable them to overcome any perceived legal
barriers to collecting race or ethnic data. Another firm voiced strong
interest in having the Collaborative build a broader coalition to promote
standardized national approaches for such data collection that would help firms
get this information via existing administrative systems. While support
organizations did not directly work with firms to address these issues, at
least one sponsor independently supported work directly relevant to firm
concerns.13
As we discuss further in Chapter VIII, the second phase of the
Collaborative will focus more heavily on supporting firms in their efforts to
collect primary data on race/ethnicity. Firms have decided not to attempt to
directly influence federal policy but instead, using their collective power via
the Collaborative, to help shape the form in which race/ethnicity data are
collected and to better support firms that seek to collect such data so that
their efforts are synergistic.
2. Indirect Influence of
the Collaborative
While the Collaborative may not have directly pushed firms to
improve their ability to collect primary race/ethnicity data, many
participating firms expanded their data collection and plan to continue to do
so. Firm involvement in the Collaborative appears to be at least one of many
factors supporting such expansion decisions. At the Collaborative's outset,
only a few firms had a policy of collecting data from all members; all but one
now have such policies (Table IV.2). The exception is a firm that collects
data selectively on race/ethnicity and is not yet convinced that its needs are
sufficient to justify more universal collection, considering the challenges
inherent in introducing such a change across the organization and its diverse
IT platforms.
Given the scale and complexity of firms participating in the
Collaborative, firms' success in fulfilling their goals for data collection
remains to be seen. None expects to succeed in the near term, as
racial/ethnicity data collection is a multiyear effort that requires decisions
involving trade-offs and calculated risks. Firms such as Aetna that instituted
member Web portals found that although the majority of portal users reported
information, building up data on a large share of the membership posed a
challenge. Further, firms face trade-offs in determining which racial/ethnic
codes and categories to use. More extensive codes may be more accurate, but
can also prove burdensome to both staff and members.
Provider-based firms appear to have an advantage in collecting
racial/ethnic data because they are more closely linked with providers and thus
have enhanced ability to capture race/ethnicity at the point of service. For
example, the medical group affiliated with one firm collects information on
language preference at point of scheduling so that it can arrange for an interpreter
if needed; race/ethnicity, which is perceived as more sensitive, is collected
during the visit. Staff are trained in and provided with scripts for use in
eliciting racial/ethnic information as well as with materials for distribution
to patients who want to know more about why the information is requested. Most
health plans, however, are not provider-based systems. The other strategy that
at least one firm has pursued involves capturing data on its own employees
because this is something they can control and implement.
One encouraging note is that firms starting to collect data
have reported less member opposition than they feared—perhaps in part because
all reporting is voluntary. It may also be that efforts are "under the radar
screen." More broad based efforts might generate more concerns by advocates.
On the other hand, some firms noted that high levels of distrust exist in some
communities and for some subgroups. One said that, in their view, provider
support may be essential to capturing such data because enrollees would ask
their providers about responding to any firm request. At least one other firm
also noted the importance of having engaged minority community leaders in
discussions about primary race and ethnicity data collection at the outset of
its efforts. These comments raise the possibility that some firm strategies
may be more effective if they can engage other stakeholders in their pursuit.
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E. HEDIS Data Submission on Common Measures
Sponsors originally designed the Collaborative with the
expectation that firms would submit and share with other participants the HEDIS
indicators for their diabetic population at a minimum of two time points (with
an intervention occurring between the two). However, from the start, firms
expressed reservations about this. When the Collaborative did make a formal but
limited request, only a few firms responded
The record is somewhat ambiguous regarding how firms viewed
the agreements about sharing common measures at the beginning of the
Collaborative. From the start, AHRQ pushed for a consensus document outlining
expectations. An initial draft proposed at the July 2003 meeting ushered in
the formation of the Collaborative (Chapter II). The draft was revised
with feedback from the participating firms and reissued at the July 2004
meeting as a Memorandum of Participation. In it, firms agreed to commit to
three meetings, to work with RAND to improve the race/ethnicity data available
to them, and to use accepted measures (starting with HEDIS indicators for
diabetes) to support their work. However, the agreement also stated that firms
would have substantial flexibility in responding to market conditions and noted
that shared data, pilot designs, and results would be balanced against
requirements for maintaining privacy, confidentiality, and proprietary
interests.
The issue of common reporting
of HEDIS data did not arise again until mid 2005 at a leadership meeting of the
Collaborative. While we did not attend the meeting, we understand that it was
convened in response to some participants' concerns that the emphasis on
geocoding and surname analysis was detracting from efforts that might lead to
tangible and "scalable" pilot interventions to member plans. AHRQ staff told
us, for example, that the support organizations felt that as long as the
Collaborative kept analyzing data rather than intervening on disparities known
to exist, there would be no actual impact on disparities. According to the
minutes, participants agreed:
The Collaborative
needs to produce tangible and "scalable" benefits to its member plans for it to
warrant their continued participation. In order to achieve such benefits
however, the members concurred that they each had to make meaningful progress,
contribute findings/models to the common good, and report to the Learning
Organization fully and on a timely basis.
The meeting reportedly led to a
re-energized Collaborative with more complete reporting and sharing among
member firms and an agenda that shifted (at the sponsors' request) from
geocoding and surname analysis to more active efforts at intervention.
We are not aware of the reasons for the delay, but CHCS/IHI
did not formally request participating firms to submit HEDIS measures until
November 3, 2005. The request was for firms to submit three or four specific HEDIS
measures on diabetes for their full plan membership stratified by commercial,
Medicare, and Medicaid lines of business. The request proposed four
racial/ethnic categories consistent with those used in the geocoding and
surname exercise. It also proposed submitting HEDIS 2005 (CY2004) data on
December 15, 2005, followed by HEDIS 2006 (CY 2005) data on October 15, 2006,
and potentially HEDIS 2007 (CY 2006) data a year later. The memorandum
proposed a new Disparity Index and a Quality Index to track performance over
time.
As observers on the call when the request was under
discussion, we heard firms ask about the scope of the request; staff could not
provide answers immediately. Recognizing staff difficulties in responding to
questions about scope, CHCS surveyed firms in the Collaborative to learn more
about their concerns. In an April 2006 document, CHCS stated that all but two
firms responded, and only one declined to provide the suggested measures (a
decision that was modified after further discussion). However, by April 2006,
only one firm had responded with data, with another said to have committed to
provide data by the June 2006 meeting.
In round three, we had the opportunity to ask firms about the
reasons for their (lack of) response to the request for HEDIS indicators. Most
responses to this question were relatively brief. In many cases, it appeared
that firms did not spend considerable time debating whether to respond to the
request. The decision not to provide data did not appear to be central to the
firms. Often they did not give it much attention, either because they felt
they had already expressed their lack of interest in providing these data or
because they examined the request and felt it would be too time- and
resource-intensive. Firm feedback indicates that our earlier interpretations
regarding firms' lack of support for collecting common measures may be on
target.
First, firms are not necessarily able to report firm-wide
HEDIS data by (proxy) race and ethnicity, at least universally. If firms
capture such data, they typically do so for a subset of their population, such
as those in particular disease management programs. To generate the measures
requested by CHCS, many firms need IT support while all face competing obligations
not under the control of firm staff involved in the Collaborative. The demands
on resources associated with collecting common measures were cited as a large
reason for the lack of support of these measures by at least four firms. We
believe that the request for HEDIS data submission was later modified to give
firms flexibility in defining their population of interest. Nonetheless, many
firms were legitimately concerned about the potential utility of the indicators
and remained sensitive about use of the indicators to compare firms or judge
performance trends in the absence of their direct intervention. Our interviews
clearly show that at least some firms remain relatively sensitive about the
release of information on any aspect of their performance, particularly as
related to measures distinguishing racial and ethnic subgroups. A couple of
respondents also commented that too great a focus on comparative measures would
have limited the opportunity for firms to be truly collaborative and to focus
on understanding why disparities exist (rather than how much and at which firm
they exist the most). However one participant from a support organization told
us that, from personal experience, sharing data is the first step to true
collaboration because it peaks the curiosity of participants in understanding
what the data mean.
Second, the support that sponsors perceived from firms for
publicly reporting HEDIS measures was based on tacit commitments made in
Collaborative meetings, which, in hindsight, proved to be overstated. Many
lead contacts viewed the request for HEDIS data as another of the many requests
they got from sponsor and support organizations. Interviewees told us that
they reside in complex organizations and should not be expected to make binding
commitments for their firms in such meetings. One interviewee observed, for
example, that even a CEO's commitment could be difficult to obtain on the spot
since other staff in the organization will be operationalizing the policy
response and need to be consulted. IT constraints, in particular, can be
problematic, a fact that firms confirmed on the April 2005 call of the full
Collaborative.
Third, the sponsors' original goal to generate HEDIS data over
time for use in assessing improvements gained through interventions was
unrealistic given the Collaborative's two-year time frame, the complexity of
the participating firms, and their diverse interests. One firm had significant
experience in public reporting on common measures with other firms in their own
market, and noted that even that effort—which involved like firms in a common
environment—was very difficult and took a long time to develop. A respondent
from this firm said collecting common measures was a laudable goal but not a
practical one for a group as diverse as the Collaborative, and within such a
limited time frame. Furthermore, regardless of whether firms could submit
HEDIS indicators for 2005 and 2006, they clearly did not conduct the types of
interventions that would likely drive noticeable change in national indicators
over only two years.
Fourth, despite the efforts CHCS indicated it made to involve
some firm experts in formulating the solicitation on common measures, the
solicitation could have more fully addressed the firms' likely questions and
taken into account the diversity across firms and the particular challenges of
firms without single integrated systems across locales and product lines. The
memorandum requesting common measures did not indicate which product lines
should be considered—HEDIS data are more available for managed care, especially
HMOs, than for other products—and did not appear to anticipate the operational
issues firms might face, especially if a company divided authority by payer
(the Collaborative focused mostly on the commercial sector), used several IT
platforms, or did not focus its geocoding work on its entire population as
opposed to those in a particular state or region. CHCS's inability to address
these concerns in advance or respond in the meeting may have inadvertently
reinforced firms' existing reluctance to share data.
As researchers, we understand firms' concerns about
interpreting the data they provide, although the sharing of data among
participating firms might have helped strengthen the group process and
reinforce the importance of addressing disparities. Firm data would likely
have covered diverse populations—for example, those in disease management
programs or all members—and time frames. While two years of data might have
allowed firms to serve as their own control and show trends, the interpretation
of such trends could be problematic in the absence of an intervention or in the
case of one whose focus did not match the data. Hence, shared data seem useful
in pointing out the existence (or lack) of disparities but not in comparing
disparities across firms or identifying how effectively firms have addressed
them.
The lesson we draw from the
Collaborative's experience is that if a sponsor wants to convince firms
reluctant to share data to do so, it must make a more compelling case for the
value of shared data. It must also be certain that the request will be
supported with assistance and is as operationally feasible as possible.
Finally, the sponsor needs to be prepared to respond to the types of concerns
firms may raise and make sure that firms express them openly in meetings and
calls rather than ignoring the request.
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