Starting from birth, the electronic health record (EHR) is an important tool that tells the story of a patient’s medical history over time. Medical care teams utilize the EHR to capture progress notes, medications, immunizations, laboratory data, and other key administrative clinical data. While the EHR provides a timely and accessible record to patients, families, and clinicians, the language used in medical records can convey providers’ bias — both unconscious and conscious. Research shows that stigmatizing language used in adult patient records can result in differential treatment, including more negative attitudes of the patient and less aggressive pain management decisions.
The Center for Health Care Strategies recently spoke to Ben Danielson, a pediatrician, Nikki Montgomery, a family advocate, and Mary Catherine Beach, a researcher and professor, to discuss the impact of stigmatizing language in medical records for pediatric patients and their families. The conversation builds on a recent webinar and provides additional insights and actionable suggestions for clinicians, health systems, and medical education.
How can medical care teams start to address bias in the electronic health record?
Ben Danielson: As a clinician, I’ve had conversations around how to inject a sense of humanity and appreciation for the person that you’re caring for. Nikki and I have talked about the idea of opening notes with affirmations about the child and family as that shapes an important positive narrative.
Nikki Montgomery: I agree, it sets the tone for a relationship immediately. My immediate response is warm when I read a note that begins that way. It shows me that we [the provider and the patient] are building a relationship.
Mary Catherine Beach: That type of narrative also helps future clinicians who read the note remember that this is a person who has a life and people who love them, and that can be invaluable for the patient’s care. We don’t often see the patient’s voice reflected in EHR notes. In the research, clinician’s notes seem to be bio-medically focused and the patient’s concerns, hopes, and goals are lost. It is important to start documenting what the parent or child thinks is the problem and solution as that can positively impact care.
Given the potential consequences of stigmatizing language in the EHR, are there examples of health care systems that are linking documentation to the medical team’s performance?
Mary Catherine Beach: Ideally, we could get to a point where the culture of respect for patients is a quality measure. A culture of respect shouldn’t just look at how patients are written about but also how patients are spoken about with other team members. This could be monitored at the health system level, but I don’t know of any current efforts to do that specifically.
A culture of respect shouldn’t just look at how patients are written about but also how patients are spoken about with other team members.
Ben Danielson: We’re going to have to innovate. More than 40 percent of physicians are salaried and typically have an incentive bonus built into their salaries. If the concept of patient satisfaction and whether the patient was treated with respect became a part of that incentive bonus it could create wonderful change.
Nikki Montgomery: Health care systems need to offer an avenue for patients to be able to report if they experience a bias in the record or in verbal communications. While there might be existing outlets for patients to address their concerns, patients often don’t know where to go. Health care systems need to create structures for accountability, or we are not going to see improvements.
What is the role of medical education in addressing these issues?
Nikki Montgomery: Providers need to understand that patients are going to read notes in the EHR, and should ask themselves, “When the patient reads what is written, will that build trust or break it?” Reading the note from the patient’s perspective is a simple way a provider can check their bias.
Ben Danielson: This is a huge topic that needs to be more deeply built into our training. Students usually have an Introduction to Clinical Medicine course as part of the transition into clinical rotations, which is such an important time to learn. Using tangible examples of EHR notes that clearly convey bias from the provider versus other examples of notes that lift up beauty and brilliance is one-way students might be able to start to think about the EHR differently. It needs to be an obligation for medical training to shift how we think about the EHR. It is also important to recognize the need for increased diversification of our health care field. Many of these conversations are different for me as a Black doctor talking to Black patients about trustworthiness and understanding how the system can be harmful. We need to be better at training those entering the medical field and be staunch advocates for diversifying health care providers.
Mary Catherine Beach: When teachers in the medical setting hear a colleague say or write something disrespectful about a patient, it needs to be addressed. It is important to show people that their notes can cause harm, both because the patient can read it, and because it can negatively influence other providers and can result in less adequate care. That can be a compelling lesson to trainees, especially if what they wrote is disrespectful because they were frustrated or a bit too busy.
In pediatrics, the medical care team may need to document various family members’ voices given the age or communication ability of the patient. How can they honor the various voices of the families they work with?
Ben Danielson: I’m a big fan of including multiple voices and looping back to confirm what you heard was accurate. This makes sure that the record is representative of the intended message, especially when multiple people are sharing. I think sometimes providers feel the need to arbitrate something that’s going on between a family; however, it’s not the goal of the provider to arrive at one story but rather to provide space for different perspectives and to reflect this in the note.
As a parent, I appreciate seeing my words and concerns in the notes, because to me, it means that I was listened to, and my contributions were relevant to the decision-making process.
Nikki Montgomery: As a parent, I appreciate seeing my words and concerns in the notes, because to me, it means that I was listened to, and my contributions were relevant to the decision-making process. If clinicians can reference who said what and how that informed what was planned next, that is also very helpful. It is also so important for the child’s voice to show up in notes frequently. With my 10-year-old, it happens sometimes, but I am also very intentional and prepare my son to have discussions with his care team, which ideally end up in the notes. Clinicians need to make sure the child’s voice comes forward every time because even though there can be several other voices, it’s important that the clinician takes time to talk to a child who can communicate their needs.
What are some ways medical care teams can foster an environment where patients and families feel understood and credible?
Nikki Montgomery: What was really helpful for me was to have doctors who said, “I’m the expert at orthopedics but you’re the expert with your child.” This set the foundation that as a parent I have a lot to contribute because I know what my child’s life looks like outside of the clinical setting and those contributions are important to the process. It’s also important to not just honor the family’s voice but for a clinician to go a step further and understand the families’ thoughts and opinions. We are all contributing to our children’s care in different ways. For example, due to my son’s complex health care needs, I know 24 hours a day what his heart rate and temperature look like in addition to many other intimate details. I bring that knowledge into the medical setting, and it is important for clinicians to recognize and validate that knowledge.
Ben Danielson: Patients and families bring a wealth of knowledge into a clinical setting that needs to be prioritized. We see it all the time in the hospital where the medical care team decides on a course of action, for instance, “Let’s start this medication,” and a mom, especially a mom of a child with complex health issues says, “You do that and his body is going to shut down, and we’re going to be here a week longer than you want us to be.” Those are the lessons providers can learn when they listen to patients and families.
Any other final thoughts you would like to share?
Ben Danielson: I would love to reinforce that health care ought to be a joyous practice. It’s an incredible honor to be in space with families. We shouldn’t be afraid of saying the wrong thing but embrace building relationships, especially during sometimes a family’s hardest moments. Families come with the most incredible things to offer that help all of us grow and ultimately support the child’s health.
Patients and families want to have a relationship with a provider that is filled with trust so that even when a misstep happens, it can be fixed, and the relationship can persist.
Nikki Montgomery: Being vulnerable and trying to build trust in the provider-patient relationship allows opportunity for people to have an open dialogue when something goes wrong. No one wants a world where medical professionals are robots who spit out a script. Patients and families want to have a relationship with a provider that is filled with trust so that even when a misstep happens, it can be fixed, and the relationship can persist.