U.S. Health Care Transformation: Thwarted By A Glaring Omission?

While scrolling news headlines, a ticker for a recent Washington Post blog by Philips : ‘The Changing face of healthcare’ , caught my attention. As expected the article included discussions about our national shifts toward value-based health care and why doctors and our health care system must transition toward becoming more responsive and data-driven. As with many articles on this topic, it was devoid of the patient perspective — health care consumers. The direct patient perspective is chronically absent from deliberations about our health care system transformation and I believe this continued omission will ultimately thwart efforts to improve quality and reduce costs. Patient engagement is central to any strategy to transform our health care system. Why then don’t we consistently seek and incorporate direct patient particularly high-cost users’  input about realistic approaches to health care innovation and transformation? What we would we learn if we did? I decided to chat about this with a few health care consumers.

During a health education session with low-income residents in Washington, DC, I posed a question to a room filled with middle-aged men and women, most of whom we would deem high-cost, high need users: ‘What would it take to convince you to stop using the emergency room and build a relationship with a primary care doctor?’. I learned three things. First, each of them had at least one negative interaction with the health care system which discouraged them from further engagement. They described dismissive doctors who make them feel as if they are on an assembly line and condescending and impatient health care staff who don’t actively listen to their concerns. Their comments applied to both inpatient and outpatient care. One person said, “Every person I know who went into the hospital sick, ended up dead. That’s why people don’t go”. These interactions and perceptions have eroded their confidence in our health care system as a place of compassion and healing. Consequently, for most of them, absent a dire situation, doctors and the health care system should be avoided.

Second, while they seemed aware of the relationship between preventive behaviors and good health, there was little personal acceptance of this connection when it came to their actions and preventing disease. For example, they shared stories of people they knew who delayed care for diabetes resulting in leg amputation yet none of them had recently been screened for diabetes nor had they consistently gone for annual physical or dental exams.

Finally, they told me in quite colorful language about their deep and penetrating distrust of the medical establishment. The discussion focused primarily on the relationship between doctors and the pharmaceutical industry. One person said, “It [doesn’t] matter why you go to see the doctor, you’re [going to] walk out with a handful of pills and the medicine makes you even sicker than you were before.” Another said, “the only reason doctors want to see patients is to get rich prescribing drugs people don’t need.” I was a bit astounded by the uniformity of their opinion that doctors are more concerned about pleasing and being compensated by the pharmaceutical industry than caring for them. Health care-related conspiracy theories and distrust are more pervasive than we acknowledge and are impacting patients’ willingness to engage in our health care system.

I have participated in countless public health and health policy conversations. The focus of these health care strategy and program implementation discussions have never been focused primarily on the types of issues raised by these consumers. Whether clinicians, policymakers, innovators, researchers or financial overseers, patients are our raison d’etre and their buy-in is imperative. Therefore, continued omission of their voices will thwart our progress. Addressing their feedback is daunting but we should not dismiss their concerns and suggestions because the solutions seem impractical. Until we strengthen our collaboration with health care consumers, directly acknowledge and consistently incorporate their perspectives into our strategies from conception to implementation, the transformation we seek will continue to elude us for decades on end.