Patient Engagement as a Two-Way Street Part 2 – “Getting to Know You”

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.