Patient Engagement
A Reference Manual Toward Better Care for Patients and Physicians in 2021
An Essential Guide to Navigating the US Healthcare System
When it comes to buying a household appliance, car, or home, consumers study their options carefully. The customer is conditioned to consider all options when making these major purchases; benefits and costs are mapped out clearly by manufacturers and reality checked by consumer product journalists and other customers who have purchased similar products.
But what happens when people are confronting cancer, diabetes, or heart disease treatment or prevention? Then, they’re not so sure in their decisions as they confront a lack of authoritative information and a web of conflicting studies and recommendations.
Talya Miron- Shatz, PhD, an expert in medical decision making, and author of a new book titled “Your Life Depends on It: What You Can Do to Make Better Choices About Your Health,” takes a new approach to why physicians and patients need to abandon old behavior patterns that no longer work and learn to help each other make better collaborative choices.
Dr. Miron-Shatz maintains that consumers must learn to express what they want and become part of the decision-making process as a partner or informed participant.
It’s an intriguing idea whose time, very frankly, is overdue. Doctors can no longer assume treatment decisions are all “their call.” Dr. Miron-Shatz maintains that both doctors and patients must explore what will work best toward the desired outcome and, as an outgrowth of this exploration, health system leaders must recognize that their processes for approvals, prior authorizations, and formulary baffle patients and cloud their understanding of potential outcomes and must change.
The System Rules Itself — Not Patient Input or Outcomes
We make a mistake if we assume that patient care is the system’s priority. When the decision pathway is murky and the consumer's voice is absent, the system jockeys to make sure “house rules” win. Consumers not only need clarity of information, but they also need to build up their ability to make informed choices. As Dr. Miron-Shatz writes:
“We all make health and medical choices every single day. We choose to take a vitamin supplement, go for a run despite a sore tendon, forgo birth control pills, or have chemotherapy after cancer surgery. The more important these decisions are, the more vulnerable we are, and the tougher choosing becomes. This is why we need to build up skills to deal with these choices.”
It’s a simple yet powerful concept. For years, we in the healthcare ecosystem have heard the seemingly sensible call to “invite patients to the table.” Epidemiologist and decentralized clinical trials leader Craig Lipset, himself a patient with a rare disease, recognizes that assumption is flawed. “It’s their table in the first place,” Lipset says. “Too many fear ‘I don’t know’ as a sign of weakness, rather than a signal of confidence and honesty.”
Though a response of “I don’t know” from a physician to a patient’s question may not inspire confidence, a provider’s willingness to explore questions with the patient — working as a team — is the foundation for a patient-physician relationship that is a positive force for inspired and trusting care and likely better outcomes.
Time for Shared Decision Making
It’s this working partnership that Dr. Miron-Shatz believes to be foundational for systemic change. However, with payers often making the care decisions, it often seems that the system serves itself. The patient is an afterthought with little influence in the conversation — at best a “junior partner” in their own care decisions.
Payers often reject medical technologies for reimbursement as “investigational.” They cut physical therapy short, either because “it’s working” or “it’s not working.” Doctors are forced to battle the system, until, exhausted, they follow the path of least resistance. Physicians and patients need to hone their shared decision-making abilities in order to align and direct their combined voice toward better care choices.
Dr. Miron-Shatz knows this must happen. Consumer-patients need to have a larger say in the direction of their care, and they need allies to help them make smart decisions. Sy Syms, the menswear mogul and health philanthropist who founded the SYMS clothing chain in New York City, coined the expression, “An educated consumer is our best customer.”
It’s a concept that transcends its advertising tagline as it applies to just about every interaction a consumer, even a health consumer, may find themselves in. Consumers entering the health system as patients should remember it, and physicians should listen to their charges. Perhaps the will and needs of the educated (health) consumer can be the foundation of a new alliance that helps healers, too often swimming upstream against the flow of the system, to be better partners and advocates for their patients.
Healthcare professionals that master the patient-care decision-making partnership draw upon emotional intelligence to communicate effectively, empathize with their patients’ struggles and call upon medical knowledge and research to be better providers.
But, most physicians are not sufficiently trained to speak with patients and are overwhelmed with the expectations of the system struggling to digitize and integrate technologies to ease their administrative burden. It’s a recipe for making decisions in isolation.
Physicians are Dedicated to Patient Advocacy
Allyson Ocean, MD, a medical oncologist and Associate Professor of Clinical Medicine at Weill Cornell Medicine, is among the founders of a pancreatic cancer health professional and patient advocacy community called Let’s Win for Pancreatic Cancer, that encourages shared decision making, says she is on the phone with insurance companies nearly every day trying to make sure her patients can get the treatment they need, and get it paid for.
“My best advice to work around the system of whether or not drugs or tests can be covered for cancer is to make sure you have an advocate in your field working for you,” says Dr. Allyson Ocean. “The frustrating part for me is that sometimes we even have to educate the insurance companies and say, ‘There’s a reason why I want to use this medicine.’”
In medical school, doctors do not learn how to navigate the medical system. They expect to help patients, to tackle disease — but not how to collaborate to tackle obstacles thrown up by the very system in which they’re preparing to work. Dr. Miron-Shatz, a “medical decision-making scientist,” has researched how doctors, consumers, and health systems need to learn how to collaborate and make better medical choices.
Her new book is the long-needed guide for physicians, patients, and payers that will help them better navigate today’s care realities and rising consumer expectations. Dr. Miron-Shatz recognizes that what is essential to innovation’s success is having a knowledgeable and engaged customer — the consumer voice — as part of the decision-making conversation. She sums up the challenge facing caregivers and patients in this fragmented health ecosystem:
“Making better health and medical choices is neither intuitive nor easy, especially in the face of a life-threatening decision or despite medical jargon and confusing probabilities. Expecting us to handle these flawlessly is unrealistic and ignores issues of cultural background, a whole slew of cognitive barriers, lack of professional training in how to convey medical information, time constraints, and health-system deficiencies.”
Consumers and providers are at a disadvantage. Patients often feel that medicine employs a secret language requiring a skilled translator, and the range of treatment protocols and care options appear to change constantly. The outlook is daunting; to better make informed decisions, Dr. Miron-Shatz prescribes collaboration.
That’s the key from her point of view, and ensuring patients sit at the head of the medical decision-making table must become the norm. It’s central to better, informed choices that drive care delivery, and will also influence future drug development and regulatory processes. Our lives depend on it.
[Special thanks to Dr. Elinor D. Bashe and John Bianchi for their contributions and input.]
