Fit for Purpose? Identifying the Right Standard(s) for the Right Job

When we are speaking of "fit for purpose" whose purpose are we speaking of:  the physician/professional's? The person who is ill? The caregiver? The technology supplier? The regulator? The payer?

Noticing that there is no discussion of copyright or business goals for inter-organization communication in the panel on fitness for purpose. But, that was clearly a need articulated in yesterday's panel on semantec interoperability and the competing (literally) code-sets.

RE fit for whose purpose, we should be designing and building for all who will use, or at least work to avoid building inadvertent barriers for users.  Physicians/providers, person/patient/consumer, family caregiver, non-clinical settings of care such as social services or community centers, apps and developers, payers, researchers, registries, public/population health–all are expected users under the 10-year nationwide Interoperability Roadmap.  So we should be designing to anticipate all of those users, even if operationally we must build in stages/phase or concentric circles.

We should also design for interoperability and exchange in multiple directions.  For example, interoperability is not just about patients' static access to view their health information in an EHR.  We recognize that it is bi-directional at least, with patient-generated health data, so providers now have access, too, to relevant health information.  Indeed, multi-directional, as we recognize the importance of social and environmental determinants of health and integrating data relevant to a patients' health status from non-clinical settings of care and non-clinical sources, and as we recognize that shared care planning involves a range of resources such as family caregivers, nutritionists, transportation, physical therapists, etc.  Etc.

Also interesting to note that past conversations have listed security standards as barriers to #interoperability.  As we discuss the right standards for the right purpose, can we discuss not creating artificial and unnecessary barriers for patient and caregiver engagement in their own health while also maintaining and improving security hygiene for actual and serious threat vectors?

For measuring interoperability, simple questions can be asked of patients and caregivers, such as:  "was your health information waiting for you at the next stage of the care process?" "How many times did you have to fill out a health history form?" and "Did they give you data that you could understand in an electronic format if you asked for it that way?"  These are the same type of questions we can ask patients post-care, such as "how well does your new knee work?" or "How many days did it take you to recover?" or "Did you have to go back to the hospital/ASC after surgery?"  Patients are excellent explainers of their own lives.

Governance in CCDA has been a huge problem for us in the HIE space. Frequently, CCDA CCDs from smaller vendors are just enough to pass MU2 requirements, but lack many important pieces of data that were not explicitly required. 

Steven Waldren (AAFP): We continue to have the wrong focus. We have not had a meaningful discussion on "purpose." Instead we focus on the technology. Case in point is the question by Mr. Lenel James and the response. He spoke to the testing that was accomplished during the HIPAA transaction standards maturation process. The industry did not create a testing framework and then say, oh.. we should pay differently if the interoperability works. Rather there were business forces that caused the development of testing. I know ONC is focused on the health IT, but we need to pull interoperability with appropriate business/market forces. 

We need disruption. I posit, other industries did not "do this" the other industries were invaded with new entrants that transformed the industry. We need the same in health information technology. We need to have discussions about how we can lower the bar for new entrants into the market and challenge the status quo. 

Let’s face it.  We have created a monster.

Clinicians are overwhelmed with

            Systems they can’t use

            Systems they can’t easily navigate

            Systems that can’t or don’t conform to their workflow

            Systems that require them to be data entry clerks

            Systems that force coded data entry, versus simple narrative

Clinicians are overwhelmed with “interoperability” that delivers a flood of data:

            That is fragmented, inconsistent and often duplicative,

            That is often without context and without easy correlation and comparability

            That has scant evidence of source, provenance, authorship, authenticity, purposed of capture

            That is impossible to digest

            That is impossible to apply to current patient care, conditions, interventions and decision making

Clinicians are spending on average 2 hours per day more than before their EHR system was implemented

            To tend data entry and other EHR oriented tasks

            This is not time spent with their patients and not time spent with their families

This is the situation we face, this the burden we must lift, without continuous pandering to entrenched interests and nonsensical mandates.

Basically we have failed to achieve fitness for purpose for a key end user:  the clinician in performance of their primary tasks.

The road to where we are was paved with good intentions.

And we have traveled it on the fuel of magical thinking.

We as a society seem to have naively assumed bribing or coercing use of technology designed and built to optimize reimbursement in a paradigm we call FFS but was slowly morphing to a sort of pay-per-word would catalyze leaps of innovation, enable "big data" to ride in and save us like some fairy-tale knight. 

People like to say it should be as easy as banking apps.  And some of us like to say people are more complicated than a sack of nickels.  But in reality, the reason banking apps and avionics and a plethora of other industries' tech is not the cluster of crap that is health IT is that it was designed and built around core purposes for which there was a business NEED or strong customer want.  We need to first look at some core things doctors, nurses, and patients need to do every day. And we need to then look at the shortest path from the hell that we're in to someplace we'd all rather live and work.

We need to quit trying to boil the ocean all at once. Start at the center, with one patient who has needs, goals, and maybe even a soul. Where that patient interacts with a doctor, a nurse, a pharmacist and where the clinicians need to communicate and coordinate with one another as well as the patient. 

Once we've got that well and properly sorted, we will discover that the secondary uses start becoming much easier.  Maybe their thorniest issues have solved themselves, because data that's clean enough to drive good care and trigger sophisticated, high-value CDS is going to be clean enough to aggregate.

"Big data" and pop health are sexy, especially to policymakers and tech nerds, but for the clinician in practice you can't give good care and outcomes to your panel of patients unless you have support you need to engage effectively and care well for each patient, each time you're called upon to serve that patient.  We need to take a collective breath, and prioritize solutions at the center of the slide deck solar system.  What are the must-fix bugs and design/fx shortfalls in what we've got?  How do we fix them?

Once we fix them, we can move on to the "nice to have."  Which may mean, yes, putting investment in developing and maturing some of the "sexier" policy and researcher driven standards on the back burner until we see what the real gap is for them after we've solved the must-fix.