May 2016—As PCORI-funded studies produce results of interest to patients and those who care for them, we are updating the stories of those projects. Here is one such update.
For patients, speaking up in the doctor’s office can be difficult, whether it’s to ask for an explanation or to express discomfort with a recommendation. A PCORI-funded project set out to make communication easier by developing and testing materials to teach both doctors and patients how to better collaborate to reach decisions. The new tools improved patients’ experiences with doctors’ visits, the project team now reports in the journal Health Affairs. Their article appeared in a special issue, supported by PCORI, addressing patients’ and consumers’ use of evidence in making healthcare decisions.
Three Ways to Encourage Cooperation
The training consisted of three parts. The research team developed a short animated video (see below) that helps patients prepare for their doctor visit. “We wanted to convey to them that it’s totally fine to ask questions, and it’s OK to interrupt, especially if the doctor is not conveying the things that are important to you,” says the project’s principal investigator, Ming Tai-Seale, PhD, MPH, of the Palo Alto Medical Foundation. “It’s OK to ask about other options.” Physicians also see the video, ensuring that they are not surprised when they receive extra questions from patients.
Tai-Seale’s team also put together a four-page visit-companion booklet for patients to bring to a doctor’s office. Ahead of a visit, patients are encouraged to write in their booklet what they want to discuss; during the visit, patients can take notes in their booklet on the next steps in their care.
Finally, doctors interacted with actors portraying patients who disagreed with recommendations. “The actor gives the physician a chance to practice understanding where the patient is coming from,” Tai-Seale says. “The physician may say, ‘You need to take a statin,’ and the patient would say, ‘I don’t want another medication; I want to diet.’”
Put to the Test
The researchers then tested the training, both against standard care and against another training. Three hundred patients saw their primary care doctors, with or without receiving training materials before the visit, and then responded to surveys.
“Our patient-centered intervention resulted in better patient experience with care and with shared decision making,” Tai-Seale says.
Importance of Language
Tai-Seale reflects on the important roles that the project’s patient, physician, and clinical staff advisors played in developing the new training materials. “We had preconceived notions,” she says.
Having done previous research that found that patients are uncomfortable disagreeing with their doctors, Tai-Seale suggested that the training tell patients it’s OK to disagree. “All of our stakeholders said, ‘Don’t say that word, disagree,” she recalls. “It drives a wedge between patients and doctors.”
Instead, the group came up with the word options for discussing patients’ future health. “So we encourage patients to ask about options,” Tai-Seale says. “That puts everyone on the same side, rather than disagreeing.”
ORIGINAL FEATURE (OCTOBER 2013)
In a 1996 episode of the television show Seinfeld, Elaine objects to putting on a paper gown because the rash that brought her to the doctor’s office is already visible on her arm. After she challenges the label of “difficult” that she sees in her chart, the physician refuses to take her rash seriously. A doctor Elaine subsequently visits sees the notation in her chart and also disregards her problem.
Although this scenario was played up for laughs on TV, real-life patients do worry about being perceived as difficult, researchers at the Palo Alto Medical Foundation Research Institute (PAMFRI) learned in a recent study. Patients believe such a label can lead to lower quality care. “We refer to ‘Elaine’ when we discuss this fear,” says Dominick Frosch, PhD, formerly of PAMFRI and now at the Gordon and Betty Moore Foundation.
Whether for treating a rash, lowering cholesterol, or fighting cancer, healthcare decisions often involve several treatment options, and there’s no single correct answer for all patients. Trade-offs among effectiveness, side effects, cost, and convenience may be different when all the aspects of each patient’s life are considered. “Patients have to live with the consequence of the choices. So, they should be part of the conversation,” notes Frosch, who won PCORI funding to study the issue when he was at PAMFRI.
“We want to put the responsibility on the healthcare delivery system to convey the message that patients’ opinions matter. We also want to provide communication tools to patients so that doing the right thing—having an open communication with their physicians—will be the easy thing to do,” says PAMFRI’s Ming Tai-Seale, PhD, MPH, who is now leading that study.
To bridge the communication gap between patients and clinicians, Tai-Seale and a multi-disciplinary research team are developing and testing a set of communication tools that would help create a safe space—a “zone of openness”—for shared decision making. The goal is to have patients actively participate in making medical decisions, despite time pressures and other barriers to communication.
Sandra Rickard, 75, of Palo Alto, California, regrets not having always had such a zone of openness. Inadequate communication with her doctor contributed substantially to delays in diagnosing her autoimmune disease and cancer. She told her “distinguished doctor” that she had all the symptoms of thyroid disease, but he didn’t pay attention. “I stewed for a long time after not being able to get the tests I wanted,” she says. Then, she discovered a lump in her breast. “I didn’t rush in to see him; I wasn’t going to take his valuable time,” she recalls.
Finally, two annual visits after she had first complained of thyroid symptoms, Rickard went into the doctor’s office and adamantly expressed her need for tests, instead of assuming her previous docile attitude. When he did send her for evaluation, the results showed considerable thyroid deterioration and evidence of autoimmune disease—and also breast cancer and lymphoma.
I am a cheerleader for anything that is going to improve doctor-patient communication… I used to be quiet as a mouse, and now I’m totally on the other end—a chatty Cathy.Sandra Rickard Patient Partner
Rickard is now a patient partner in the PAMFRI project. “I am a cheerleader for anything that is going to improve doctor-patient communication. I have had a number of medical procedures, and I know the difficulty. I used to be quiet as a mouse, and now I’m totally on the other end—a chatty Cathy,” she says.
With the goal of improving patient-clinician communication, the PAMFRI team is considering two complementary approaches. “Ask 3 Questions” is a simple patient-activation tool already in use. It encourages patients to ask: What are my options? What are the possible benefits and risks of each option? How likely are the benefits and risks of each option to occur?
The researchers plan to augment Ask 3 Questions with a new set of interventions that they are developing to help clinicians encourage patients to express their views. The researchers have included patients in the project from the start. “Involving patients in every step of this research has made it more firmly grounded in the frontline of care,” Tai-Seale says. “We invited patients to provide big ideas about how we might design the zone of openness.”
Involving patients in every step of this research has made it more firmly grounded in the frontline of care.Ming Tai-Seale, PhD, MPH Principal Investigator
Brainstorming and individual recall of personal experiences by patient and clinician collaborators have generated insights that led the researchers to conclude what makes patients most uncomfortable: a disagreement with their doctors. “So, we decided to zero in on that point by designing a set of interventions that could potentially reduce that discomfort,” Tai-Seale says.
What happens when doctors and patients disagree? “Often, they vote with their feet,” Tai-Seale says. “But there’s no guarantee their interaction with the next doctor will be better. Voicing their concerns is an alternative to exiting.” Another consequence: Some patients simply don’t take the medicine prescribed if they disagree with the treatment plan.
Four clinics at the Palo Alto Medical Foundation will participate in the evaluation of the interventions. One clinic will implement Ask 3 Questions, another will apply Zone of Openness, one will use both, and the fourth will follow current usual practice without any intervention. Three hundred patients will participate. The findings from the project will inform the researchers as they design a larger-scale project.
Overall, the team hopes to promote the transition Rickard experienced from poor physician-patient communication to a satisfying relationship. Rickard favorably describes her current doctor: “She listens, she’s thorough, she asks questions, and she answers my questions.” And Rickard has changed her communication style. Not only does she talk more, but at the start of an appointment, she gives the doctor a list of what she hopes to accomplish. “It’s good for me,” she says, “because I can be way too chatty if I don’t think I’m getting through.”
At a Glance
Creating a Zone of Openness to Increase Patient-Centered Care
Principal Investigator: Ming Tai-Seale, PhD, MPH
Goal: To look at and develop improved decision-support tools to encourage communication and shared decision making between patients and their clinicians.
Posted: September 10, 2013; Updated: May 20, 2016
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