What Else Could It Be? Research Seeks to Help Patients Improve Communication During Diagnosis.

Our study, published in the Journal of Patient Safety, takes initial steps to improve communication between the patient and physician to improve diagnostic accuracy and reduce errors. This work allows us to co-design question prompt lists for patients to use during the clinical office visit.

Diagnostic errors are common and are detrimental to patients and healthcare systems. Clinicians work tirelessly to prevent these errors, and empowering patients to ask questions can enhance diagnostic accuracy. Our research provides a starting point to help patients understand what questions to ask. For example, simply asking, “What else could it be?” can lead to better diagnoses.

Our team’s research, published in the Journal of Patient Safety, is the beginning of MedStar Health National Center for Human Factors In Healthcare strategy to help improve diagnostic accuracy and avoid errors. We are collaborating with the University of Toronto, Baylor College of Medicine, and patient advocates to create a new list of questions that patients can ask primary care clinicians.

Researchers have shown that diagnostic error, such as missed or untimely diagnoses, leads to an estimated 371,000 deaths and 424,000 permanent disabilities each year. More than 75% of these are related to patient/provider communication. 

These stark statistics present an opportunity for improvement. To begin our work, we first sought to understand the current recommendations and resources to help patients navigate the diagnostic process.

Helping patients and families speak up.

Our unique healthcare delivery research approach focuses on patients, families, and caregivers to help build practical strategies that make conversations with providers easier. 

Sometimes, patients and caregivers don’t express their questions or concerns during medical visits due to factors such as: 

• Past negative experiences

• Cultural and social factors

• Fears about sounding foolish

• Historical power dynamics that suggest questioning the doctor can be perceived as rude.

Yet research shows that speaking up can help patients learn more about their diagnoses and treatment options, which leads to better outcomes. As patients ask questions, clinicians can get more information and clarify their reasoning to provide a more personalized diagnosis. 

But speaking up starts with knowing what questions to ask. Researchers, doctors, and advocacy groups have developed question prompt lists (QPL) to help with this. Our team worked to understand how many of these lists are out there and how they might be used to help patients and providers communicate.

We conducted a comprehensive review of medical research and gray literature, which refers to information produced outside the traditional peer-review process by government agencies, educational institutions, businesses, and advocacy groups. In total, we identified 5,509 questions from 235 resources. On average, each question prompt list contained approximately 23 questions, with the most extended list including 221 questions.

Given the average clinical visit is around 18 minutes, this volume of questions would be difficult to cover in one conversation, let alone multiple visits. And most QPLs focus on later stages of the diagnostic process, indicating missed opportunities to ask questions and improve diagnosis. 

Our research shows that questions can help improve communication between patients and physicians at all stages of clinical encounters. A few examples include:

• What are the warning signs of heart disease and stroke?

• What should I do if I have trouble paying for my medical care?

• What should my blood pressure be?

• Can you explain my laboratory test result to me?

Related reading: MedStar Health Researchers Partner with Patients to Improve Outcomes in Diagnostic Safety.

Next steps toward improving communication.

Now that our research has demonstrated opportunities for improvement, we’re working with patients to design a more straightforward, broader QPL. It will include basic questions, such as:

• What is my diagnosis?

• How do you know that?

• What else might be causing my symptoms?

Questions like these, asked early in the diagnostic process, can help set the stage for better communication throughout the clinical encounter. 

To help further encourage patient participation, QPLs could be posted in exam rooms so patients can refer to the lists and providers can endorse their use. Once the QPL is designed and an implementation strategy finalized, we’ll pilot the new program in MedStar Health’s primary care clinics. 

Diagnosis is a many-factored, precise process—at MedStar Health Research Institute, we’re working with patients and providers to improve communication and focus on the crucial conversations that can build trust, break down barriers, and improve outcomes.

This scoping review discussed in this article was supported by a Patient Safety Learning Laboratory grant from the Agency for Healthcare Research and Quality (the “DREAM Lab,” 5 R18 HS027280–03).