The pace at which articles have been written about Accountable Care Organizations (ACOs) has been nothing short of frenetic. It appears every possible healthcare stakeholder has shared ideas regarding how the Shared Savings Program in general, and ACOs in particular should be structured. The breath of perspectives has likewise been astounding.  Organizations with only a remote footing in the healthcare space, as well as those entrenched in this space have offered their perspectives. And yet, for all the robustness of this discourse, there is one voice that has been drowned out within the symphony of perspectives- the voice of the patient.

Listening carefully to the patient voice may prevent some challenges American health care policy development has faced in the past. Although the Shared Savings Program constitutes a Medicare delivery system reform as opposed to a mere payment system reform, past payment system reform policies have encountered challenges that could have been avoided had the patient perspective been considered. These reforms were myopic in their approach to restrain costs without considering patient consequences.   In essence, they evidenced an approach that was payment-centric yet not patient-centric.

For example, a study conducted seven years after the hospital inpatient prospective payment system utilizing Diagnosis Related Groups (DRGs) was implemented revealed that, although on average outcomes had not worsened, clinical instability of patients at discharge increased after DRG implementation. This meant patients were being discharged “quicker and sicker.” While savings were achieved, they were achieved at the expense of patient safety.

Challenges Regarding The ACO Quality Metrics

The Shared Savings Program’s delivery system reform offers outstanding potential to benefit patients, but it also creates a greater susceptibility for patient harm than payment system reforms because of the interrelationship between patient outcomes, defined by process-oriented quality measures, and provider payment. The ACO quality measure metrics include patient/caregiver experience, care coordination, patient safety, preventive health, and at-risk populations.

One challenge concerning the ACO quality metrics is that the opportunity for patient input on the patient experience is limited to survey data. While well-designed surveys can yield valid and reliable program outcome information, there should be additional avenues for patient input. This limitation narrows the type of information that can be elicited from patients to pre-defined issues capable of being informed by quantitative data. Unlike focus groups and in-depth interviews, surveys do not allow for a comprehensive understanding of a respondent’s perspective. Patients will not be able to raise important quality issues on their own initiative. Important qualitative information, such as how best to design survey questions to yield a greater response rate for specific populations, cannot themselves be reliably obtained from surveys. Qualitative data are of great importance in ACO quality performance standards, as the majority of measure types are process oriented.

Another challenge with limiting patient input to mere survey data is that there are a number of variables, such as time of day or year the survey is administered, that may influence the results. While survey data are important and should be utilized, most of us would scoff at a suggestion that an ACO board’s concerns should be limited to survey data. The voice of the patient should be elevated to the hallowed level of importance reserved for board decisions.

A better approach to enhance the measure of patient care experience would be to hold intermittent patient focus groups in addition to conducting patient surveys, with the focus group and survey costs excluded from both the ACO benchmark and spending calculations. The survey and focus group reports should be required to be shared with the board members, and the board should be required to identify possible remedies to quality challenges. These remedies should be shared with CMS and with all ACO patients. Finally, patient representation on the board should be generous, and certainly should include more than the one patient currently proposed.

The patient voice can serve as a sentinel, alerting health policymakers of harm before that harm is validated by a study years later, as was the case with the implementation of DRGs. While DRGs may have encouraged providers to choose patient diagnoses that would elicit favorable payments, the ACO shared savings approach may encourage providers to skimp on care for the sickest of patients altogether. The ACO quality measure results will not prevent this outcome, although they may serve as evidence that care avoidance has occurred. CMS must identify a process for protracted input by patients or patient advocate groups to thwart any such efforts before they become entrenched practices.

Building On The Work Of Patient Advocacy Groups

The voice of the patient is amplified by the work of the many patient advocacy groups that exist to represent the patient interest. Their sophistication in doing so has escalated over the years, resulting in an unparalleled knowledge base of patient need.  For example, my organization, the Patient Advocate Foundation (PAF) located in Hampton, Virginia, collects extensive data on patients who need assistance with the challenges they face in accessing healthcare for chronic, debilitating or life-threatening diseases. In 2010, PAF provided assistance to nearly 83,000 patients across 278 disease states, collecting 260 variables for each patient they served. The data are compiled in an annual Patient Data Analysis Report which quantifies the collective patient voice that can be compared across years for a longitudinal analysis of patient-perceived barriers to healthcare.

The Patient Data Analysis Report, combined with the experience of Patient Advocate Foundation case managers, can also be used to inform health policy development.  For example, of the 21,000 Medicare patients that contacted PAF for assistance last year, over 40 percent of them qualified for Medicare on the basis of disability. This percentage is significant because among the entire Medicare population, only about 16 percent are eligible for Medicare due to disability status. Clearly, the disabled Medicare population has significantly greater health access challenges and should be defined as an at-risk population.

The top diagnosis for Medicare patients with chronic and/or debilitating conditions contacting PAF was diabetes. The at-risk population diabetes quality domain measures could be informed by the types of health access issues these patients are currently experiencing. At the very least, PAF data might serve as important baseline data evidencing the challenges ACOs are designed to combat. These data might also be used to refine the existing measures. For example, rather than merely measuring the percentage of patients with diabetes who received medical attention for nephropathy during at least one office visit within 12 months, it might be more meaningful to refine this measure by including the percentages of patients who understand that there are no symptoms for nephropathy and who understand the importance of regular visits, as well as patient-identified access-to-care barriers.

Meaningful Patient Participation Is Crucial For Patients And Providers

CMS has recently demonstrated its ability to act on provider concerns when it announced three new options to encourage doctors and hospitals to participate in the Shared Savings Program.   This recent announcement is commendable, as the ACO model is a delivery system reform that holds exponential promise. While CMS should be commended for responding to provider concerns, the announcement also evidences CMS’ somewhat myopic approach toward assuring the program’s success by limiting its response to provider concerns.

While it is important to listen and appropriately respond to concerns raised by the provider community regarding how savings should be shared in the Shared Savings Program, there will be no savings for providers to share if patients do not adhere to the medical advice given by the ACO providers. One of the changes announced by CMS is the institution of free “learning sessions” for providers interested in participating in the program. While a new delivery system focused on patient-centric care coordination represents a paradigm shift for providers, the greater paradigm shift will be experienced by patients who receive care in a system that provides financial rewards to providers who generate savings. Patients are not likely to follow medical advice if it comes from providers who participate in a system that is too difficult to understand — except for the fact that it promotes financial rewards to those providers who can generate savings.

Meaningful patient participation is the keystone to ACO success and that participation can only be accomplished if patients are educated about ACOs by the patient advocates that they have trusted with health system navigation for years. The provider learning sessions on ACOs should include patient advocate expertise on how best to communicate the benefits of ACOs to patients.

One of the most important benefits of ACOs is that they reward provider coordination of care — an approach intended to lead to integrated services. However, allowing providers to coordinate patient care without the meaningful inclusion of patients and their perspectives is not coordinated care at all. Rather, it is exclusionary care, and there should be no financial benefits for such care. As noted earlier, the lack of financial benefits may be a de facto result, because without patient adherence to medical advice, it is unlikely there will be any true savings. Care coordination will not lead to cost savings if the coordination is limited to providers.  In other words, if you build ACOs, patients will come to them, but their participation must be meaningful for the savings to be meaningful.

As CMS continues to tinker with its vision of the Shared Savings Program and ACO development, the number of articles on the subject voiced by a diverse number of stakeholders will certainly increase. If CMS and providers are truly committed to the success of ACOs, they should refine their listening skills to hone in on one soft, yet important voice – the voice of patients.  Like the canary in the mine, the voice of patients and their advocates has the uncanny ability to alert others of significant future unseen perils.