to have taken place: First, there has to be
some interference with authorized access;
second, this interference must have been
done knowingly; and third, there cannot be
any reasonable justification for the blocking. 22 ONC goes on to identify a number
of typical practices which – depending on
the specific circumstances – could be considered information blocking, including
vendor contract terms or pricing policies
that appear to block the flow of information
in some excessive way. 23 The tricky part is
in deciding which practices are reasonable
and which are unreasonable. The current
regulatory framework for EHR systems
under the CMS EHR Incentive Programs
does not provide the necessary policy
framework for completely managing this
problem. In addition, while there is a growing set of anecdotal data, there is very little
empirical data that helps us understand the
extent or impact of this problem.
ONC has proposed some additional
steps to help alleviate information blocking, including further constraining standards to enable interoperability rather than
hamper it; promote greater transparency
in the pricing, features, and limitations
of EHRs; and establish governance rules
that discourage the creation of artificial
barriers. 24 These steps may help but they
will not likely go far enough to eliminate
information blocking. At a minimum, ONC
needs to make the reporting of information blocking easier so that a larger base of
data can be built to characterize the extent
of the problem and its impact on healthcare organizations and citizens. But here’s
the real problem: Interoperability should
result from a compelling business case, not
regulation or incentives. Incentives cannot
overcome the lack of a compelling business
case to cooperate and not compete when it
comes to healthcare data.
Individual hospitals are not the only
users of EHR data. As payment reform con-
tinues to take hold, ACOs will increasingly
aggregate data from across organizations
and EHR systems to understand the move-
ment and outcomes of their patients. But
only a small number of ACOs – typically
the largest ones – have been able to estab-
lish data warehouses to facilitate their “big
data” analytics. Without a more affordable
market for these products, smaller ACOs
are left to fend for themselves. With or
without sophisticated products, ACOs
often end up spending a significant por-
tion of their IT budgets just on the inter-
faces required to collect data – what former
National Coordinator for Health I T Farzad
Mostashari refers to as a “tax” from EHR
vendors on hospitals just to make their own
data available. 25
Because product-specific solutions are
often required to gain access to this EHR
data, EHR vendors often feel justified in
charging incrementally for the tools and
strategies that are required; this is another source of supplemental revenue as the
number of new license sales declines due
to market saturation. And EHR vendors
also feel they can charge for features that
some customers may not want and justify
the price they charge by making these features available. While it is expected that
vendors will amortize their research and
development costs through the sale of their
software and services to many customers,
there is a limit to the degree this can be done
legitimately. We run the risk that health
data in the U.S. will become monetized as
access to data itself – even data within an
organization – will carry an ever-increas-ing price tag. Within a hospital especially
there are issues of safety and often urgency
that should not be susceptible to artificial
barriers for data access. More and more,
hospitals will engage third party data consumers to assist in aggregating, analyzing,
and sharing data with other organizations,
patients, and appropriate government
authorities whether they are public health
agencies collecting surveillance data or
CMS collecting quality measure reports.
ONC can try to combat information blocking through its various policy levers, incentives, and disincentives – and we should
support those efforts – but the lack of
collective agreement on even defining the
problem will only enable limited success.
ARE STANDARDS ENOUGH?
Standards make access to data easier,
especially between disparate systems
and different organizations. Standards
help prevent vendor “lock in” and, thus,
help protect organizational investments
in interoperability. While participation in
standards development activities in the U.S.
is largely open to anyone, the hidden truth
is that these efforts can become dominated
by large vendors who can afford to pay their
representatives to attend, while smaller
companies and other stakeholders – like
hospitals, provider organizations, public
health agencies, and even individuals – can-
not afford the time to attend and, therefore,
have less of an influence on the outcome.
The net result of this is that the standards
development process can become overly
influenced by these vendors and their
particular agendas. The use of standards
for interoperability is certainly preferable
to proprietary approaches, but standards
can be bent to accommodate the propri-
etary interests of those who are helping
to define them. Even the strict use of open
standards by vendors does not guarantee
that data will be accessible and available to
the organizations that have already paid to
capture and store it. Vendors continue to
promote that “special sauce” that they feel
differentiates their products from those of
their competitors.
Standards are not enough. Vendors
need to resist the temptation to monetize
data as pressure for new sources of revenue escalate. The vision of the LHS cannot
be achieved with structural, technical, or
undue financial barriers to data sharing.
Vendors should compete on the merits
of the functionality they provide, not the
opportunism of the data locked within systems they provide. The need for improved
functions and features within healthcare
systems is so dramatic that there is plenty
of opportunity for future revenue. But
healthcare organizations need to bear their
share of the burden as well. Participation in
standards development – directly, through
associations, or through other organizations – is essential to ensure that one’s
interest, needs, and perspectives are taken
into account. As the LHS evolves, so, too,
must its component organizations evolve.
So what can organizations due to promote their interests in this area? Here are
some suggestions: