In recent years, physicians have begun to understand and appreciate the crucial link between health literacy and positive patient outcomes. In order to self-report symptoms, manage chronic health concerns, adhere to aftercare instructions or provide informed consent, understanding is key to the patient–physician relationship. But due to barriers such as language differences, limited resources, and varied consent and education processes, patients are not always adequately informed when managing their health and consenting to procedures.
Health literacy
According to the National Academy of Medicine, health literacy is an individual’s capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.1 Multiple studies show that health literacy is low among demographics such as low-income elderly, racial and ethnic minorities, and individuals from lower-income socioeconomic groups—the same groups who experience the largest disparities in terms of health outcomes, unconscious bias and access to care.2,5
The Institute of Medicine3 has proposed a model of health literacy comprised of four pillars: cultural and conceptual knowledge, print health literacy (reading and writing), oral health literacy (listening and speaking), and numeracy.
“Health literacy is fundamental to a person’s ability to make the best health care decision for themselves or for their families,” said Isabel Newton, MD, PhD, co-founder and chair of the Interventional Initiative, a nonprofit which seeks to educate on minimally invasive, image-guided procedures. “Health care decisions are personal and depend on one’s health issues, values, goals of care, barriers to access to care and opportunities to overcome them.”
When it comes to surgeries and procedures, the ethical onus falls on the clinician to ensure that the patient has the necessary understanding in order to consent to treatment, though it can be difficult to make sure that all four pillars are accounted for.4
"I'm passionate that patients should be able to make informed choices about their care,” said Eric Keller, MD, founder of the Applied Ethics in IR Initiative and board member of The Interventional Initiative. “Unfortunately, data suggest that many patients do not receive the information they need prior to healthcare decisions.”
Barriers to literacy
Ideally, informed consent would be conducted in a comfortable and noncoercive setting and in the patient’s native language, said Helena Rockwell, who is a member of The Interventional Initiative and the current director of research at the Applied Ethics in IR Initiative. However, this is not always the case.
“The person best positioned to obtain informed consent would be the person who’s most familiar with the procedure or who’s performing it,” she said. “But for a number of reasons, such as in a large, busy medical center or training center, different people might be obtaining consent and talking with the patient.” In an urgent or emergent situation, consent may have to be obtained quickly just outside or even in the procedure area instead of a more comfortable setting, like in a clinic or consultation room.
Providers often rely on translators to communicate with patients—but they are not always readily available, and so clinicians may have to rely on a family member or their own knowledge of the language. The consenting process can also take longer when using a translator, and some messages may inadvertently be forgotten or misunderstood, Ms. Rockwell said.
There is also variability in individuals’ approaches to obtaining informed consent.
“We’re pretty good at describing the procedure itself and what its intent is, but we all share information in different ways and might wind up quoting different data about outcomes, risks and alternative options,” Ms. Rockwell said.
Plus, the ways in which we report data are not always the best for conveying the information in a clear and digestible manner.
“A percentage is not always the easiest thing to understand,” she said. “But if you show a patient a figure or a graphic—for example, if you show them there’s 100 people, and highlight how many people out of 100 experience a particular adverse effect—they may better understand what you’re trying to communicate.”
Many clinicians may create their own patient resources, but it’s difficult to create high-quality brochures that are accessible to all patients. According to the Centers for Disease Control, the average national health literacy level is at the 6th–8th grade level, but Dr. Newton and Ms. Rockwell say that many patient education materials are written at or above high school level. 6
Additionally, the use of medical jargon, while helpful for communicating between members of the health care community, can be isolating for patients.
“When we go through medical training, we learn not only concepts—we learn a language,” said Dr. Newton. “This way of speaking allows us to frame our brains, but it also allows us to communicate in shorthand. And this jargon is one that is necessary. It’s one that facilitates efficient communication and handoffs. But it’s one that is extremely alienating for anybody from the outside.”
This disconnect is particularly challenging when it comes to IR treatments, Dr. Keller said, since the public has less of a baseline familiarity with IR and image-guided therapies.
Better information
One possible solution lies in changing the way in which physicians educate their patients at every step of the process. From patient information brochures and patient decision aids to accessible consenting platforms, efforts are underway to change the way in which health information is presented.
Dr. Keller, Dr. Newton and Ms. Rockwell have spearheaded the development of IR-focused patient decision aids (PDAs) with the Interventional Initiative and Applied Ethics in IR organizations.
These PDAs contain balanced information about a procedure’s benefits, risks and alternatives. Currently, the PDAs are being developed as physical handouts, with a corresponding free web-based information page. But patient education materials can come in many forms, such as handouts, figures, posters or videos, all with the aim of providing patients with accessible, comprehensive, understandable information they need to make an informed health care decision.
According to Drs. Newton and Keller, the PDAs produced by the Interventional Initiative are developed from a thorough literature review and vetted by focus groups of patients, IR clinicians and radiologists from diverse practice backgrounds. They also feature custom graphic designs that depict the intervention. This is important, because everyone learns and processes information differently—so having a visual aid in addition to text-based descriptions is very helpful, said Ms. Rockwell. When translated into a different language, they undergo review again by representative focus groups.
These PDAs are also accompanied by a postprocedure handout, which includes information about what to expect following a procedure.
“It has common things to look out for, like the potential for some soreness, or that you’ll have some redness, but if ‘this’ happens you should call your clinician or go seek emergency medical care,” Ms. Rockwell said. “It’s also nice to have this physical sheet of paper to share with family members and caregivers.”
These PDAs can be given to patients while in the waiting room, allowing the patient to learn and think about their options while waiting to be seen. This often leads to more informed conversations and questions during the visit, Dr. Newton and Ms. Rockwell say.
When tested at two academic medical centers, patients who were given a PDA while in the IR waiting room reported greater understanding of the procedure and satisfaction with the consent conversation, compared to those who did not receive a PDA. This effect occurred without any change to the consent conversation itself, as the clinicians were blinded.7
The benefit of a standardized approach to patient information, Dr. Newton and Ms. Rockwell say, is that it limits inconsistencies in what and how data is shared, ensuring patients have the most up-to-date and relevant information.
The impact of consent and literacy
While obtaining informed consent is necessary from an ethical and legal standpoint, it’s also a chance for clinicians to engage with their patients and build a connection, Ms. Rockwell says.
“It represents an important opportunity for us to connect with our patients and empower them in their rightful ability to make an informed choice regarding their health care—whether that is to do an intervention, to not do an intervention or to explore alternatives,” said Ms. Rockwell. “It’s a fundamental component of a meaningful provider and patient partnership.”
Providing patient education material and being willing to educate yourself are key to the patient interaction, says Dr. Newton, who is working on a curriculum for clinicians on how to engage in compassionate consent communication with patients.
“I learned about how to speak in not just a more compassionate way, but in way that will respect where patients are when they come to that communication, how to work with patients who are facing barriers or having difficulties and how to be a more holistic and better physician all around,” Dr. Newton said. “I’m excited to teach that to my colleagues.”
Investing time to implement good consenting practices is well worth it, she says.
“Data has shown over and over again that you need to slow down to speed up,” Dr. Newton said. “If you invest just a little bit of time at the front end, patients will have a deeper sense of trust in the relationship, a better sense of understanding and better adherence to the plan later on. And then you and your patient will be partners in their wellness.”
And patient education materials can be a vital tool in expanding access to care, specifically interventional radiology, Ms. Rockwell adds.
“There are a lot of patients from historically marginalized populations who have more difficulty receiving healthcare,” Ms. Rockwell said. “There is definitely a void there that IR could help fill because our procedures are minimally invasive, so there is often less downtime than after open surgery. For a patient, if their work is sustaining them and their family and they can’t afford to miss a week of time to have a more invasive intervention, often there’s an IR procedure that might also be able to provide them some benefit.”
Education material can be helpful when comparing options like medical management, surgery, and IR procedures to help patients make the best decision for their health and lifestyle.
Ms. Rockwell also believes that the impact can be felt on a global scale as well.
“As we branch out into global health, we can translate this information into the primary language of wherever we’re going,” she said. “It can be a great way of conveying what we as IRs do and connecting with patients and healthcare institutions globally.”
References
- Nutbeam D. The evolving concept of health literacy. Soc Sci Med. 2008;67(12):2072–8.
- Baker DW, Gazmararian JA, Williams MV, Scott T, Parker RM, Green D, Ren J, Peel J. Functional Health Literacy and the Risk of Hospital Admission Among Medicare Managed Care Enrollees. Am J Public Health. 2002;92(8):1278–83.
- Institute of Medicine (US) Committee on Health Literacy. Health Literacy: A Prescription to End Confusion. Executive Summary. 2004. ncbi.nlm.nih.gov/books/NBK216029
- Ayotte BJ, Allaire JC, Bosworth H. The Associations of Patient Demographic Characteristics and Health Information Recall: The Mediating Role of Health Literacy. Aging Neuropsychol Cogn. 2009;16(4):419–32.
- Liu C, Wang D, Liu C, et al. What is the meaning of health literacy? A systematic review and qualitative synthesis. Fam Med Community Health 2020;8:e000351.
- Centers for Disease Control. Understanding literacy and numeracy. 2022. cdc.gov/healthliteracy/learn/UnderstandingLiteracy.html
- Srinivas S, Newton IG, Waradzyn M, Kothary N, Keller EJ. Patient decision aids before informed consent conversations for image-guided procedures: controlled trials at two institutions. AJR. 10.2214/AJR.22.28165.
