Single Most Important Missing Non-Clinical Data is Time-Stamped Healthcare Workflow & Life-flow Data

I’m participating in today’s #HITsm tweetchat on the topic of Beyond Patient-Generated Health Data – What Non-Clinical Data Matters in Health?

The title of this post pretty much sums up my position. The single most important (currently) missing non-clinical data is time-stamped (semantically interpretable) healthcare workflow data (including patient life-flow data). I’ve written about process-mining of both time-stamped data from both EHRs (link) and the combined interactions of wearables and the Internet of Things (link).

Most data that health IT folks focus on is outcome and efficacy-related. Which is all well and good. But until we between to get a handle on healthcare workflows, that is, instrumenting them and systematically improvement them, healthcare will continue to experience what I call The Workflow Problem.

Here are the tweet chat questions (SDOH stands for Social Determinants of Health):

Topic 1: #SDOH cropping up everywhere as “critical” to understanding #publichealth. What data points do you think most relevant to you?

We, healthcare, health IT, and public health professionals need more data about citizenry “life-flows,” which are basically personal (and professional!) “workflows of life.” I’ve written about the important relationship between healthcare workflows and life-flows here and here (based on a previous #HITsm tweetchat I hosted).

Topic 2: Are there non-clinical data points you would NOT want your#healthcare provider to consider in evaluating your #health? And why?

I would want two things.

  1. All of my healthcare workflow and personal life-flow data is in principle available, de-identified, for research purposes. However, I could specifically opt out of certain workflows/life-flows. Why? None of your business.
  2. All of my identifiable healthcare workflow and personal life-flow data is in principle available to my physician, but he or she must specifically ask for access and I must specifically opt-in to allowing access.

Why? I am comfortable with this balance of contributing to healthcare in general and contributing specifically to my own healthcare. Others may wish to emphasize more or less workflow/life-flow transparency.

Topic 3: What do you think might be concerns about using alternative #data to assess #health risk? #Privacy? #DataQuality? How to address?

My main concern, given that my previous opt-out/opt-in data access strategy is implemented, is data quality. That is why I use phrase “semantically interpretable” workflow data. I’ll refer you to my 2012 discussion of EHR Event Log Maturity.

eventlog

The general idea, which is that we need to be able to correctly interpret time-stamped events, also applies to time-stamped data from wearables and the Internet-of-Things (and I’ve seen similar discussions in that realm).

Topic 4: Assuming #interoperability solved, how could alternative #data sources be incorporated into #healthcare #workflow, made useful?

Ha! “Assuming interoperability solved…” then how to incorporate into healthcare workflow, in my mind puts the cart before the horse. Solving healthcare’s workflow interoperability problem is an essential prerequisite to solving healthcare’s interoperability problems. See my recent 7,000 word, 5-part, Healthcare IT News series on this subject.

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