As we enter the second half of the year, many of the long-anticipated provisions of the ACA are set to begin. In just a few months, starting October 2013, the health insurance marketplace open enrollment period will start, with coverage beginning in January 2014. Simultaneously, many of the consumer-oriented provisions of Meaningful Use Stage 2 are being implemented and deployed. In addition, ACOs are beginning to take hold in some markets, and health information exchange is at least extant in many areas. You would think that patient (or consumer) engagement would be at an all time high, but that is apparently not the case. A recent report by the Deloitte Center for Health Solutions had some very troubling findings According to the report, 1 in 3 healthcare consumers surveyed in 2012 were not actively engaged in their care. Interest, participation and compliance – for example, participating in preventive actions recommended by their providers, looking up information on the internet or through other sources or making specific financial preparations for care – was low for this group. Even more surprising is that 2 in 5 healthcare consumers are classified by Deloitte as less active in managing their healthcare in 2012 than in 2008; the proportion of those disengaged increased from 23% in 2008 to 34% in 2012.

With health care reform premised on patient access and engagement, this news is discouraging at best. Didn’t we (it was our money after all) just spend multiple billions of dollars during this time to try to improve engagement by incentivizing EHR adoption for better treatment and lower costs, with many of the criteria for those incentives aimed at increasing the participation of patients and their caregivers with the healthcare system? Wasn’t the assumption that this engagement would both improve outcomes as patients took more interest in their care, and lower costs as patients had more say in what procedures and care options were pursued? So what happened? How is it that patient engagement has declined? And what can be done to reverse this trend?

The Deloitte report has the following analysis of the situation:

“Many consumers are motivated to activism based on individual circumstances – experience with a new medical problem, loss of employer-sponsored coverage, or their inability to obtain effective medical treatment due to cost or denial of coverage. As these circumstances increase across the population, and as health costs force many to go without insurance, it is expected that consumer activist segments will increase.

Activism is also positively correlated to education and cultural perspectives about what constitutes health and health care: as the workforce expands to include a wider diversity of workers from different backgrounds and cultures, it is likely activism will increase as traditional providers will be pressured to integrate non-traditional methods of treatment in their plans.”

According to this report, patient engagement should increase as the provisions of the ACA kick in and peoples’ circumstances changes to align them toward engagement. I personally think this is an overly optimistic assessment, especially given the demographic characteristics of the disengaged as reported by Deloitte; amongst this group, 29% have one or more chronic conditions, 34% are uninsured, and only 5% reported being in excellent or very good health..

Perhaps a more cogent analysis comes from a post in the Harvard Business Review blog. The authors find three basic issues with treating patients and requiring them to be engaged:

  1. Patients don’t want to be there: People don’t seek out healthcare without a reason. Something is wrong and patients want to solve it and get back to normal. When patients are required to be proactive decision-makers, the health care system is often casting a very reluctant hero into the role.
  2. Patients aren’t equipped to be there: Even when patients are willing to be decision makers, they may not have the tools. At a time of unusual stress, the system asks them to absorb technical information and make difficult decisions that require specialized expertise.
  3. Patients aren’t in it alone: To design for patients alone is to forget that they are part of a complex system and aren’t often independent decision-makers. Decisions are shaped by other stakeholders: friends and family who support the patient, the insurance company who foots the bill, practitioners who provide care and expert advice, the hospital administrators who inform system-level protocol, and so on.

These points give a pretty clear direction for how to alleviate some of the problem.

Finally, a recent article in the journal Health Affairs found the same issues with patient engagement as the Harvard blog, and concluded that it is very difficult to get people to make active healthcare decisions. A better alternative, they find, is to design a “choice environment” that does not require patient engagement, but does require single-time decisions on opting in or out of certain types of care and care strategies. This seems a very pessimistic view of the role of patients in making decisions about their care.

What does all this mean for health centers and health center patients? To sum up, several recent studies and surveys have found that the engagement of patients in making decisions about their healthcare has decreased substantially in the last five years. The authors of these studies have a range of opinions about whether patients can be incented to engage further, but we know that much of the gains we expect in health outcomes and cost reduction are based on patient engagement. How can health centers continue to increase the engagement of their patients?

The authors of the Harvard blog post make a very important point. The decisions that patients and their caregivers need to make are about complex health situations where many different elements need to be considered. For example, decisions about diabetes control are not just about Hba1c or current glucose levels. They are about cardiac health, obesity, physiological issues, emotional challenges, sociocultural issues, and family and community support. A program that facilitates engagement in just one of these areas is not going to be effective or attractive to people making healthcare decisions, nor is it likely to markedly improve outcomes. On the other hand, the range of issues presented as part of a care decision process cannot be so complex that it becomes incomprehensible or unmanageable. Finally, decision-making is not a one-way street. Patients must feel that their providers are in this with them, helping them to consider options and make informed decisions.

Fortunately, health centers by their very nature have a considerable head start. Health centers have historically and increasingly addressed a whole spectrum of clinical, community, family and social issues; as CHCs treat an older, more complex population and care for an increasingly diverse population with more chronic conditions, patient engagement is ever more critical. In addition, the move toward Patient-Centered Medical Home accreditation has encouraged broader and deeper engagement by both the patient and the care team. By offering services and programs to the whole community, health centers also offer opportunities to engage family members, especially children, which can further engage a patient. Finally, health centers are already designing and implementing patient information systems that are targeted to meet the needs of particular demographic, cultural and linguistic groups. While CHCs are not the only healthcare organizations that are engaged in these programs and system changes, they may be the only type of healthcare organization actively engaged in all of them.

Patient engagement appears to be rooted in not just the patient’s need for care, but also need for need for holistic treatment where the care team is engaged and influences the patient to engage. Health centers already provide this type of robust care environment. CHCs must look to deploy new technologies, or existing technologies in new ways, to help facilitate and encourage consumer participation. While the reported trends point to patient disengagement, CHCs may be able to effectively shift the trend, by enhancing and building on core systems and processes that focus on people’s needs in the context of their communities.

David Hartzband, D.Sc. is the Director of Technology Research for the RCHN Community Health Foundation