2012 EDUCATIONAL BOOK - American Society of Clinical Oncology

PERSONAL HEALTH RECORDS
● Determine what resources are needed at all phases of
the project
● Set policies that all providers can work with to support
clinical care and patient empowerment
● Decide what data are shared immediately, embargoed,
or blocked
● Provide end-user support and education
● Develop communication policies to prevent messaging
overload or under-alerting for providers and patients
These governing bodies must be given authority to make
changes to the applications as needs arise and to enact
policies for both staff and patients. If a practice has multiple
specialties, it is recommended that representatives from
several specialty areas be consulted, at least initially about
the design and needs analysis.
Embargos Compared with Blocking
One of the commonly voiced concerns about displaying
clinical data directly to patients is that a patient may see a
report with ominous findings before his or her clinician has
seen it. The most common phrase is similar to “I do not want
my patient finding out their cancer has recurred from a
website!” This is a reasonable concern and, although such a
situation may be rare, most clinicians understand that
pathology, radiology, and some laboratory results come back
with a differential rather than a simple diagnosis, which
may be quite concerning. This problem is similar to notes by
medical students, which often have academic leanings
rather than concise clinical pictures (“that purpuric rash
could be Ebola but more likely is idiopathic thrombocytopenic
purpura”). Such notes can produce anxiety in patients,
whereas clinicians have the expertise to know the likelihoods
of specific outcomes and can filter out much of the
noise to summarize for the patient.
As such, the governance structure needs to closely look at
the evidence for how to treat a given piece of clinical
information. The basic three choices are to share it immediately,
embargo it for a specified time period, or block it
(never show it). Most medical centers have chosen to show
KEY POINTS
● Personal health records (PHRs) and patient portals
provide patients with increased access to their own
medical information.
● Important considerations exist for the use of PHRs
and portals related to the types of data to display, the
timeliness of data release, electronic communication
with patients, and end-user education.
● A governance structure is essential for successful
system implementation and sustainability while
keeping providers engaged and protecting patient
safety and privacy.
● PHRs and patient portals can serve as a platform for
online patient communities and as a way to share
clinical trial information.
● Evaluation of how patients and providers use these
sites can be easily accomplished through analysis on
the backend of the system.
routine labs (such as basic chemistry profiles) immediately,
embargo pathology and radiology results, and to block such
results as HIV antibody testing. Most embargos last 1 to 6
days, and there is a safety net in knowing that if a clinician
fails to see a report for some reason, the patient will see it
after 6 days, and an important finding can be addressed at
that time. We address the special topic of clinical notes in
the section on Types of Data to Share.
Communication Strategies
Patient-physician communication is hard enough in person,
as any clinician can tell you, and it becomes infinitely
more complex when delivered through electronic media.
Furthermore, because health care, and oncology in particular,
is a “team sport,” it is often overwhelming to a patient to
figure out who to message about a given need. Front-line
providers are also overwhelmed by information overload and
do not welcome additional channels of communication. Interestingly,
patients are also surprisingly cautious about
adding to clinicians’ workloads, and so messaging strategies
need to work with both the practice style and patients’
information needs. 8 Whatever strategy is adopted, it is
crucial that it be tightly integrated into practice workflows,
or it will not be advantageous to the clinician.
Messages typically can be divided into administrative
(medication refills, scheduling, referrals, financial matters)
and clinical (new medication request, educational needs,
and symptom/follow-up inquiries). Dividing basic tasks between
clinical and nonclinical messaging makes sense and is
a good start. However, many lines are blurred and because
of this, some practices have adopted a system in which a
central person is responsible for triaging all messages to a
practice, which can be very successful. One subspecialty
clinic on PatientSite uses a total communication strategy in
this manner, where all communication to and from the clinic
is through the PHR and this single point of communication,
with a guaranteed response time. This system has been
quite successful for this clinic, but it required a large
investment (a full-time equivalent staff) by the clinic and
policy makers. A corollary to this is that every person who
receives a message is a single point of failure if he or she
either does not check messages or is unavailable to do so,
and so coverage schemes are required. A strategy that most
clinics adopt for this is a two-level process, where most
clinical messages are received by all clinical providers on
that patient’s team (physicians, nurse practitioners, registered
nurses, and administrative staff) and whoever responds
to the patient removes the message from the other
users’ queues. As a backup, each individual can denote
another user to provide coverage of his or her inbox.
Whatever your strategy is, it is vital to manage expectations;
that is, to explain to patients what the turnaround
time is for messaging and what can be handled through
messaging and what should be handled through call-in or
other mechanisms. Closed-loop communication also helps
eliminate patients’ anxiety about the status of messages.
Typically, this type of communication can be performed
by the system automatically (for example, sending readreceipts
or notification once a prescription has been sent
to the pharmacy). Patients understand that clinicians are
busy, and do not mind waiting for most responses for a
reasonable period of time, as long as that time is a known
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