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The APF has been working with a rare disease coalition to assure patients of their rights to view their test results. below is our position Our position.

The APF has been working with a rare disease coalition to assure patients of their rights to view their test results. below is our position 
Our position. We fully support the proposed Rule. Our reasons include:

• First and foremost, granting patients direct and timely access to test results will
improve clinical care and patient outcomes. Patients can respond faster and more
appropriately when they learn their test results quickly. For example, it is not unusual
that the appropriate response to a particular lab result is to make an appointment with
a relevant specialist or take other actions. But difficulties in reaching the ordering
doctor may unnecessarily delay appropriate next steps, as well as create unnecessary
stress during the “phone tag” period.

• Even worse, some patients are being harmed by never learning of their lab results.
Approximately 7% of clinically significant test results – tests that would have a
potential impact on clinical care – are never reported to patients, potentially delayi
or preventing important treatment decisions and causing harm.

5 Giving patients direct
access to their results would help reduce the number of test results lost entirely.

• We do not think that patients’ direct receipt of their own lab results will cause them to
suffer undue emotional harm, particularly since a provider can communicate promptly
to provide context and interpreta tion. Some health systems have, in fact, found the
opposite to be true; Kaiser Permanente has shown that delivering lab results online
directly to patients in a timely fashion improves provider/patient relationships.

In fact, even the availability of clinical notes written by one’s physician has been recently
shown to have minimal negative effects and significant positive outcomes. The results
from three different health systems showed that patients accessed notes frequently, a
large majority reported clinically relevant benefits and minimal concerns, and doctors
reported a negligible increase in workload. No doctors elected to stop sharing their
notes with patients and 99% of patients wanted the practice to continue.
 7
• A common reason for requesting one’s lab results is often, somewhat ironically, so that
they can be handed directly to a specialist or a new provider, especially when the
circumstances are urgent. Patients can only deliver what they possess. If patients
routinely access and save their lab results, they’ll be available quickly in emergencies.
As stated recently by Lygeia Ricciardi, acting director of the Office of the National
Coordinator’s Office of Consumer eHealth, “We want people to think about being
empowered with information before that crisis hits.
8
• The clinical consequences of timely, direct access to one’s health information are
significant. Todd Park, the federal Chief Technology Officer, recently explained, “When
patients have timely access to their records, they can spot errors and omissions, which
improves treatment outcomes and helps them avoid unnecessary procedures. Getting
access to your own data isn’t an abstract thing. It can literally make the difference
between life and death.
”9
• The proposed Rule would help save money for our overburdened health care system.
When patients cannot easily obtain and save copies of lab results and procedures, and
thus cannot quickly share them with other providers, expensive tests and procedures
often must be unnecessarily repeated.

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