Featured Guest Blogger: Nadia Ali, MB, MD, MPH
My husband woke me up at 2 AM on Monday morning for severe right shoulder pain, nausea and light-headedness. I drove him to the emergency room. Our initial encounter with the triage nurse was not very helpful. I tried to respond to her questions but she interrupted me saying the patient should answer her questions. He could hardly talk due to the pain and nausea. Finally she told us that he needs to be evaluated by the doctor and directed us to a door at the end of the hallway.
There were several doors that we saw and we were unsure about where were we suppose to go or who were we suppose to meet. There was no one to ask.
When we finally got into the emergency room, one of the nurses approached us and took us to one of the exam rooms. She told my husband to get into a gown and that she’d return in a few minutes. She left before I could tell her we had a very hard time getting his shirt on due to his shoulder pain and I needed some help. Anyway I helped him get into his gown.
The nurse returned after 15 minutes to check his vital signs and connected him to the monitor. I requested for something to relieve his pain and nausea. She said that he needs to be evaluated by the doctor before giving him any meds. Half an hour later, my husband was seen by the physician who took the history, conducted a physical exam and explained the plan of care.
My husband, who is educated and intelligent, got more confused with all the jargon used by the physician. I asked him why he didn’t ask any questions. He said he wasn’t sure it would be helpful in case the doctor repeated the same technical terms again. He also felt the doctor was possibly in a rush since he stood the whole time. Finally, around 4 AM, my husband got some pain and nausea medication. We left the ER around 6 AM with a script. Our next task was to find a pharmacy that would be open, since that information was not provided.
This was an eye-opening and powerful experience for me as a physician.
I have treated patients as a hospitalist for a long time, but I never realized the pain and agony they have to go through to get the care they need. Patients and families feel lost and helpless amongst a sea of health care professionals they encounter in a complex and sophisticated health care organization. Lots of questions and concerns are never addressed.
Health literacy barriers are prevalent at the patient-provider level, environmental level and systems level. These barriers impact the ability of patients, families and communities to access health information and services needed to live healthier lives. They’ve been found to lead to adverse outcomes such as patient dissatisfaction, poor quality of care, noncompliance, readmissions and emergency room visits. Unfortunately, health professionals are often unaware that these barriers are experienced frequently at multiple levels by patients and their loved ones from the point of entry to their discharge.
A health care organization that plans to address health literacy barriers needs basic information about the community it serves. Each community is unique in terms of its needs, resources, language and culture; all of which impact health literacy. The organization also requires insight into the experiences of the community during their encounter with the organization to understand its impact on those who utilize its services. This critical piece of information can only be obtained through patients, families and other members of the community.
There are three different levels at which community members can be involved to address the health literacy barriers at the organizational level.
The first level is related to creation of awareness regarding health literacy barriers present in the organizational setting. There are instances when patients or families express their bad experience with a health care organization. These first-hand experiences supply the powerful evidence needed to illustrate a need for change. I have utilized experiences of my patients to draw the attention of the organizational leadership as well as health care providers towards the prevalence of health literacy barriers. It helped me create awareness and get the buy-in to initiate a health literacy task force that built the momentum for a systematic organizational change for improving health literacy.
Assess Health Literacy Barriers
The second level of community involvement pertains to assessment of specific health literacy barriers at the organizational level. A good example of this is their involvement in assessing the signage of a health care facility such as a hospital. For example, in a university affiliated hospital in Philadelphia, patients and families often got lost trying to find different departments — such as radiology or echo lab. The health literacy task force used newly recruited community volunteers to look for different departments and rate the hospital’s navigation system. The exercise provided a great deal of insight into potential areas that needed intervention, such as lack of signs to indicate directions for patients.
The community volunteers were the eyes and ears of the community. They talked to patients and families while providing services such as delivering magazines or books. They identified problems experienced by patients during their hospital stay. It was encouraging to see their motivation and enthusiasm in helping us understand the other side of the story.
Finally, community members can provide feedback on interventions designed to rectify the organization’s health literacy barriers. An example is reviewing patient education materials. As part of the health literacy task force, community volunteers provided critical feedback on a new medication tool that was implemented to help hospitalized patients improve their understanding of the new medications prescribed at discharge. Their feedback helped us modify the tool and make it patient centered.
In short, community participation is an important asset that is often underutilized and unrecognized. It provides an in-depth understanding of the community health literacy and organizational health literacy. It is essential to creation of patient centered solutions for rectifying the health literacy barriers in the organizational setting.
About the Author:
Nadia Ali, MB, MD, MPH is the Clinical Assistant Professor at the School of Medicine of Temple University and Associate Program Director for Crozer Chester Medical Center’s internal medicine residency program. www.healthliteracynow is a website that she developed for low health literacy patients with chronic diseases. The website provides tools to help providers and organizations improve their health literacy.