As payment and care delivery models shift in the United States from episodic, fee-for-service care toward population health and value-based reimbursement, health care leaders are focused more than ever on patient engagement as a key to driving down costs and improving outcomes. And yet, as so many of us know who have attempted to manage our own care or tend to sick family members, the U.S. health care system rarely feels like it’s been set up to help us succeed.
What’s needed is a fundamental redesign of the patient’s role — from that of a passive recipient of care to an active participant charged with defined responsibilities, equipped to dispatch them, and accountable for the results. In other words, we need to view the patient’s role as a job and then design that job in such a way as to drive the best health outcomes possible.
Not only is it important to define the role of the patient, it is important to teach patients their role in using health IT in a focused and limited manner, taking care to not overwhelm them with minutiae. This will include developing a routine to examine their portal, and to inquire about devices or functionality to manage their health conditions. Most patient already utilize search engines to educate themselves. Health professionals already use other data bases, such as PubMed, Clinicaltrials.gov and numerous sites such as CMS.gov.
The controversy and political infighting challenges even physicians. However patients must not be ignored in the process of revising the system.. This was a major reason for the failure of the Affordable Care Act. No one asked patients what they need. That is a failure of our system.
Patient advocates and others who have studied the U.S. health care system have catalogued the degree of “unpaid,” and unsupported, work patients take on in service of their own care. The average, low-risk patient must follow up on referrals to specialists, fill and manage medications, and comply with physical therapy and other regimes. With legacy, pre-internet software systems still the norm in most hospital environments, patients also become unpaid couriers, shuttling critical health data from one provider to the next.
The Patient’s “Burden of Treatment”
Patient advocates and others who have studied the U.S. health care system have catalogued the degree of “unpaid,” and unsupported, work patients take on in service of their own care. The average, low-risk patient must follow up on referrals to specialists, fill and manage medications, and comply with physical therapy and other regimes. With legacy, pre-internet software systems still the norm in most hospital environments, patients also become unpaid couriers, shuttling critical health data from one provider to the next. 
It is still common for a patient to arrive at a tertiary or university medical center, expecting the referral physician to have records from the referring doctor. Many have learned that it is mandatory for them to carry written records, MRIs, Angiography, or more to the visit. When applying for disability, the task is even worse. For chronic conditions it is even worse, since agencies want the complete history which may date back a decade or more. It is not uncommon for applications for SS disability benefits may take a year or more and require multiple attempt to achieve success at the process. This is wasteful of patient and professional time and increase costs.
For patients who suffer from chronic or complex conditions, as a Mayo Clinic paper recently argued, the “burden of treatment” must be shouldered alongside the “burden of illness.” A 2012 study cited by the study’s authors estimated that the self-management of a chronic illness demands, on average, two hours of patient work each day — work that is often poorly supported, stressful, and frustrating in nature. For all the articles advocating for “patient-centered care,” this is the change that we ultimately must be willing to make: Rather than having patients as passive recipients of care, they must be active producers of their care, in partnership and coordination with physicians and clinical staff. So what are the requirements for getting to that end state?
For patients who suffer from chronic or complex conditions, as a Mayo Clinic paper recently argued, the “burden of treatment” must be shouldered alongside the “burden of illness.” A 2012 study cited by the study’s authors estimated that the self-management of a chronic illness demands, on average, two hours of patient work each day — work that is often poorly supported, stressful, and frustrating in nature. For all the articles advocating for “patient-centered care,” this is the change that we ultimately must be willing to make: Rather than having patients as passive recipients of care, they must be active producers of their care, in partnership and coordination with physicians and clinical staff. So what are the requirements for getting to that end state?
Account for Patient Work Across the Full Care Journey
First, we need to acknowledge and account for all the patient work that now goes unrecognized and unsupported. This means grappling with the complexity of tasks patients take on as they seek care across an ever-expanding number of settings — work that varies widely depending on acuity level, disease state, demographics, insurance type, socioeconomic conditions, and so on.
But the way we access and experience care has changed. Where we used to have a lifelong relationship with a family doctor, we now switch doctors frequently due to scheduling issues, changes in insurance coverage, and other factors. We’re also more likely to seek care outside the walls of health systems or the boundaries of specific networks — whether it be through urgent care visits, virtual consults, or alternative therapies. And we know that much of what affects our health, for better or worse, happens between visits. Who is accountable for measuring the patient experience over time and across all of these disparate care settings?
As we shift toward population health, with provider reimbursements tied directly to improved outcomes, we need to move from managing episodes of care to managing the entire patient journey across the full ecosystem of care. The patient journey becomes the operational backdrop against which patients, physicians, and other staff and caregivers must play their respective parts.
Intentionally Design the Patient’s Job into the System
If the patient is to have a job in the care-delivery process, we must apply the same principles of intentional work design to their jobs as we do to those of physicians and clinical staff. In a recent Physician Leadership and Engagement Survey conducted by athenahealth with 2,000 doctors, we found that only 20% of doctors surveyed reported high levels of engagement in their jobs. Those who were highly engaged, however, pointed to a few key drivers: trust in leadership and the system, open communication and feedback, and an operationally effective work environment that allows them to deliver high-quality patient care. It’s not a stretch to that patients would be engaged and motivated by the same drivers.
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