In light of all the discussion about the Economic Recovery Plan and
the privacy provisions in the HIT Title, I thought it might be helpful
to provide a consumer advocate’s view. The National Partnership for
Women & Families leads a coalition of consumer, patient, and labor
groups, the Consumer Partnership for eHealth (CPeH). The organizations
in this coalition are working to advance HIT adoption, because we know
that achieving better coordinated, higher quality health care demands
the integration of new technologies into the health care delivery
We know that HIT is a tool, and that like any tool, it must be
used properly to be most effective. Consumer and patient advocates
view the privacy issue as part of the framework required for effective
use of HIT.
If patients and providers are going to trust the
information managed and exchanged in an electronic environment, there
have to be clear rules that apply to everyone who has access to the
information. At the same time, if those rules are designed in such a
way that those who have a legitimate need to access this information
are prevented from obtaining it in a timely way, the benefits of
electronic exchange of information will never be fully realized.
Whether one is a patient advocate or a “privacy” advocate, we can
all agree that having to choose between privacy protections and
appropriate flow of information is a false choice; the technology
itself makes it possible to do both. But in order to get there, we
must first agree on policies that can guide the development of
technology according to a framework approach to privacy that also
allows information to flow when and where it is needed in a timely
Moving forward with policies that speed adoption while
“putting off” dealing with privacy, at best, will make these issues
even more difficult to resolve in the future, since we will at that
point be limited by the capacity of whatever technology is developed
without privacy policies in mind. At worst, it will be the first step
toward never getting around to addressing privacy, thus limiting trust
in the system, and, as a result, also its usefulness.
Years of discussing how best to approach the privacy issues in HIT
and HIE, and many attempts to write legislation haven’t yielded many
solutions. Previous attempts either seemed to be mere tinkering that
didn’t result in meaningful protection, or seemed to be overreaching
attempts likely to create unintended barriers to safe and effective
health care. Finally, consumer advocates and privacy advocates feel
that the privacy provisions included in the House version of the
Economic recovery bill offer a solid start for addressing privacy
issues in an electronic health care environment.
These provisions lay
an important foundation for building a framework of privacy protections
according to the Consumer Principles developed by the CPeH in 2006. This foundation includes:
1) Closing a loophole in the HIPAA Privacy Rule that allows direct
marketing to individuals using their personal health information
without their knowledge or permission.
2) Giving patients the right to be notified if their personal health information is breached.
3) Requiring providers to account for disclosures of personally
identifiable health information so that individuals and organizations
can be held accountable in the event of a breach of information.
4) Giving patients the right to obtain an electronic copy of their health information for a reasonable cost.
5) Improving enforcement of privacy violations.
At the same time, the provisions leave many specifics to the
Secretary to decide, which provides opportunity to ensure that those
specifics don’t result in unintended consequences that would negatively
impact the quality or safety of care.
As mentioned on The Health Care Blog recently,
many in industry are not pleased with these provisions. The National
Partnership has addressed the most common complaints in our recently-released fact sheet,
The lingering question about health reform is one of will. Amidst all the discussion about reform and indications of a unique
opportunity to make innovative changes, is there actually a will on the
part of all stakeholders to do what’s in the best interest of achieving
better health and health care, or will we continue to cling to the
interests that have prevented positive change in the past? Perhaps the
issue of privacy protections in the stimulus bill is the first test of
our collective will.