One of the purposes of patient-generated health data (PGHD)
is to help providers know their patients better than they would have otherwise
if they relied only on data captured by providers. In my experience, I
appreciate doctors who do more physical exams and tests but know more about me
that could help them personalize their treatment. As Rodgers and Hammerstein
wrote in The King and I,
“Getting to know you, getting to know all about you…”
So it is with PGHD. How can it help providers know us
better? I worked with colleagues to write a detailed response, which you can
find as a comment on the HIT
Policy Committee and HIT Standards Committee's blog requesting input on PGHD.
I’ll give some highlights in my next installment. The rest of today’s post,
while alluding to that response, is my own opinion.
While a patient-provider relationship is special and not
necessarily deeply personal, think about how people get to know each other in
general. They talk! In ways that can’t be predefined, prescribed, or pigeonholed.
Sure there are facts such as your birthday or address. But the vast majority of
emotion, experience, and aspirations are richly expressed through natural
language. Would you want to get to know someone by filling out structured forms
with multiple-choice questions?! So in response to the blog question “does all PGHD for care management need to be
in a structured form?” I’d answer a resounding “no!” As one working in healthcare standards, I
understand and fully support the need for structured data in EHRs, for
interoperability, analytics, decision support, quality measures, etc. But even if we
could magically get all PGHD structured, standardized, tagged, and
automatically imported into EHRs, that wouldn’t necessarily make things great.
Structured data has precision, but very little nuance. Very few patients think
or communicate via structure, and no amount of standards or government
regulation will turn patients into health informaticists.
So I suggest crawling before we walk or run when it comes to
PGHD. Let’s lower the barrier to entry by embracing PGHD in whatever formats or
devices (PCs, smart phones, basic phones with text messaging, etc.) the
patients can create it. Yes, there should be a direction for standards so that
appropriate data (such as med lists or glucose levels) can flow from
patient-facing systems like PHRs into EHRs and be understood. But let patients
express themselves in their own words and preserve this in their health record.
And speak to them in plain
language that they understand (which won’t be structured XML). Then we’ll
have the kind of two-way street that will help my providers “get to know me” and
deliver the kind of healthcare relationship that I want for myself and my
family.