Information Technology Reference
In-Depth Information
Patient Search
: As mentioned earlier, best practices have yet to be developed for
incorporating web tools into clinical practice. The physician concerns in this regard
are clearer. They include the lack of reimbursement for email interaction with
patients and time wasted with patients who bring in concerns, suggested treatments
or diagnoses based on unreliable or inappropriate information.
Personalized search could substantially remedy this. The basic idea is to equip a
specialized health search tool with clinical knowledge about the individual using it.
This idea is already commonplace - perhaps too commonplace for some of us. Use
any of the major search engines and you'll be presented with ads that somehow
relate to your interests. What's happening in simple terms is that the search engines
are paying attention to what you look for and learning even more detail about you
based on what you show interest in by clicking on it. Simply put, if you search for
information about cars, then it's far more likely you are in the market to buy one.
Health is a more complex challenge for personalization. People may not know
the right terms to use to describe their problem or interest. This is less of a problem
with well known and understood items like toaster ovens or cell phones. In addition,
many unapproved “cures” and “treatments” are offered and the sites promoting
them can be a wealth of misinformation. The Internet in general provides a great
deal of misinformation and biased or inexpert opinions. However, it is far less prob-
lematic if people buy the wrong coffee maker than if they decide they have some
rare, life threatening disease or, if they do have a serious illness, become enamored
of a bogus remedy that won't cure it and may even do them harm.
A solution may be linking some form of search to trusted and reliable informa-
tion about the patient. We'll discuss the approaches to that later in this chapter, but
they typically involve some sort of personal health record that is populated with data
from the patient, from health claims or from the patient's EHR.
Patient Communities
: In the past few years the Internet has morphed from a place
where people primarily consume information to one where they are actively involved
in contributing it. This “social networking” is arguably the primary use of the
Internet today. [
5
] Whether or not you personally participate, you almost certainly
have family members, friends and colleagues that do.
PatientsLikeMe
® may be the most sophisticated health social networking site. The
company was co-founded in 2004 by three MIT engineers: brothers Benjamin and
James Heywood and longtime friend Jeff Cole. Five years earlier, their brother and
friend, Stephen Heywood, was diagnosed with ALS (Lou Gehrig's disease) at the
age of 29. The Heywood family soon began searching the world for ideas that would
extend and improve Stephen's life. They envisioned an environment for sharing and
collecting data, typically on innovative treatments for incurable disease. To accom-
plish this, social networking was built on a research platform. Getting patients
engaged in aggregated clinical research was their primary mission.
The site is free to patients and accepts no advertising but it is not a non-profit
business. The objective is to gather data from patients about their illness experience
and make that available in aggregated form to organizations that are interested in
