By Gregg A. Masters, MPH

We hear considerable chatter on both sides of the ACO or ‘AC/e’ for accountable care focused enterprise absent the organizational drama of fielding an entity per se with the right structural roots or cultural ‘DNA’.

Yet, as someone with principal leadership immersion both setting up and managing the ACO ancestry down line if you will, I am mindful of the continuing granular nature of the challenge from the patient’s point of view.

When one considers the ‘faith based’ trust voucher like programs place on seniors becoming prudent (empowered) purchasers if not negotiators on their own behalf, the following experience raises some fundamental challenges in re-engineering a patient-centric healthcare eco-system.

In March of 2011 my 80 year old mother embarked on the labored journey of being ‘diagnosed’ and subsequently treated for breast cancer. The patient, an otherwise ‘age appropriate healthy’ and vibrant woman, took the parsed delivery and serial but strained confirmation of the diagnosis as an attraction into women’s health advocacy – I will explain shortly, and thus attempt to illustrate the accountable care challenge in this ‘n of 1’ experience.

I emphasize diagnosis with a mild dose of intentional sarcasm, as while the process played out it revealed multiple systemic flaws within our overpriced, discontinuous, and increasingly from a value proposition perspective ‘diminishing returns’ sick care ‘confederation’. Which according to Wikepedia is defined as:

A confederation in modern political terms is a permanent union of political units for common action in relation to other units. Usually created by treaty but often later adopting a common constitution, confederations tend to be established for dealing with critical issues such as defense, foreign affairs or a common currency, with the central government being required to provide support for all members.

But wait, this is offered in the context of a political situation. Precisely! Our healthcare, ah hem, metastasizing, commission based sick care fulfillment industry is very much a confederation of political sub-divisions defending their ‘turf’ if you will. Unfortunately in healthcare we lack the central unifying governmental role. Yet, in the typical hospital setting simply look at the political subdivisions of medical staff organization vs. an administration generally supported by a ‘paramilitary’ nursing organization, with more often than not a challenged Board of overseers given their stewardship agenda. Need another metaphor, check the myriad of medical specialty societies and watch them define and defend their interests, i.e., distribution of the cognitive vs. procedural income pie. Case closed?

Now back to the story, but first additional context to color the emerging irony. The source of my mother’s care is a indisputably a ‘best in class’ academic medical center (AMC) recognized by many third party authorities including HiMSS (the Health Information and Management Services Society) as a ‘level 7‘ (the best) facility in terms of it’s adoption and implementation of EHR technology as mission critical infrastructure.

One minor issue though is the ‘cancer center’ as a service line aggregating entity for the primary oncology specialties (e.g., hem/onc, radio therapy, etc.), is not online with the medical center’s EHR hub aka EPIC.

Yet the patient has been in a long term relationship with her primary care physician of at least seven years duration and who’s department, internal medicine, was the first service to go live with EHR implementation. Yet the primary care physician (and the entire department for that matter) was unaware of any of the patients experience or care process in the cancer center.

Thus a bit of a ‘data liquidity’ and patient care coordination challenge when it comes to a seamless patient experience relative to coordination and scheduling over certain legacy departmental silos. Remember the mantra of ‘patient centricity?’

Thus even in a top performing academic medical center that represents itself as a ‘health system’ in advertising and branding copy, the gaps in patient care are real and many. As a result, ‘accountability’ for the essential care coordination and broader navigation interests to obtain high quality and responsive care is in many instances deferred to the patient and his or her family as principal advocate.

Now back to the diagnosis issue. In March of 2011 an annual ‘routine’ screening mammogram created some diagnostic concern, as it was immediately followed by a (non routine) same day ultrasound. Shortly thereafter the departmental chair approached the patient with the following representation:

We see something we think is nothing but ask you to return in 6 months for a recheck [vs. the annual checkup interval]

The patient complies. Six months later a notice was dutifully received to return for the scheduled follow-up. This re-engagement interval began a series of progressively up-leveled and hierarchical interactions between an ultrasound tech, staff radiologist and ultimately the service or department chief with the following recommendation:

We still think it’s nothing but, I want a single fine needle aspiration biopsy done immediately

This call for ‘immediacy’ of the needle biopsy caused some genuine ‘terror’ in that moment for the patient. Unfortunately (perhaps at the time, though in retrospect a ‘good thing’), the procedure could not be scheduled until several days later.

Meanwhile in an alarmed state of an uncertain health status the patient called a women’s health activist for support. She recounted the facts of her encounters and AMC recommendations for follow-up. Upon hearing what played out, an appointment was immediately scheduled with a whole breast imaging (WBI) specialist outside the AMC’s medical staff. Prior to the appointment the whole breast imaging radiologist requested access to AMC’s mammogram and ultrasound imaging to date. The patient then journeyed back into the AMC requesting and obtaining same.

At the WBI center and post scanning the patient was told that of the two suspicious lesions identified by the AMC, neither where malignant. However, the whole breast imaging radiologist made a definitive call that another, deeper lesion not seen on the AMC mammograms or ultrasounds to date, was in fact ‘ductile invasive’ carcinoma.

Patient’s note:

Had I gone through with the recommended needle biopsies of the two suspect lesions, the likely results may have produced a ‘false negative’, with perhaps a return to the routine yearly screening schedule.

Needless to say this is not in the patient’s interest when an undetected malignancy goes untreated for another six or twelve months. [Editors’ Note: Clearly an incorrect diagnosis and resulting delay in appropriate care management can not be considered quality nor accountable care].

Now presented with conflicting diagnostic reads of her condition, patient returns to AMC for biopsies ordered by breast surgeon and presents WBI report to invasive radiologist who read it and says:

let’s go do the double core excavation biopsies.

Patient complies.

First lesion is ‘clean’ per radiologist. Second lesion caused some interactions between interventional radiologists centering on location and positional considerations of both breast and shoulder to correctly locate suspect lesion. Patient was not clear, i.e., she trusted the interventional process, as to whether AMC concerned themselves with ‘invasive ductile carcinoma’ call by the non AMC whole breast imaging radiologist.

To fast track forward, post multiple biopsies, and another MRI, the definitive diagnostic decision is delivered ‘you have cancer’ (some eleven days after WBI radiologist delivered the news).

This is one patient’s experience that raise issues on multiple levels, and may not be unique. Here are just some of the operational and system questions the experience raises on the path to accountable care:

• Who is advocating for the patient when even in enlightened health systems too many of the constituent players remain domiciled in legacy departmental silos?
• Why is the burden of delivering competent medical opinion outside of a network or health system solely on the patient to ‘make happen?’ Why such ‘data illiquidity?’
• Who are the parties in interest to remedy systemic failures, i.e., departmental silos not communicating internally in an otherwise reasonably advanced health information technology savvy culture?
• What role, if any, does the health plan have to re-mediate if not resolve systemic problems adversely impacting care coordination if not quality and outcomes of their ‘members’?
• Can systems of care and academic systems in particular legitimately discount if not ignore ‘inputs’ provided by out of system participants? For instance, if a department of radiology dismisses whole breast imaging as a valid diagnostic tool, can they toss it aside and leave it solely to the patient to make it part of the diagnostic and treatment consideration process?

There is considerably more to this story. This includes only the breast cancer diagnostic and initial treatment process portion. The next phase will drill into the after treatment continuum and the many gaps in care that currently exist outside of tightly managed integrated delivery systems, and the real world impact this ‘black hole’ has on the patient both from a psycho-social as well as physical health status perspective.

The next blog post will focus on the role of the health plan to acknowledge and remedy apparent gaps in the downstream continuum of care once disclosed. We’ll attempt to frame the concern from both a population management and total health perspective under the triple aim umbrella. Considering the ACOs will assume broad systemic liability for the health status of the members assigned to the ACO all consequential gaps in care will need be remedied if the entity is to reduce readmission risk, and well as minimize the quality and cost consequences of delayed care due to incorrect or misdiagnosis of underlying disease, while restraining the growth rate of healthcare expenditures in an ‘at risk’ and aging population.