When Jane* arrived at the hospital at 6am for her surgery, she felt she had already conquered an obstacle course.
“First, I completed this long pre-surgery checklist,” Jane says. “Then I downloaded and signed a bunch of waivers and disclosure forms from the patient portal. I called the health insurance company to make sure they’d cover it. I arranged for time off from work. Finally, I convinced my sister to drive me an hour to and from the hospital and stay with me for a few days after to help me recover.”
Jane glanced at other people in the waiting room, then whispered to her sister, “I’m exhausted, and I’m lucky enough to figure this out. What if I didn’t have your help or transportation? Or a flexible job? Or housing? What if I was disabled, or if I couldn’t read or speak English?”
Learning the lingo
Across the U.S., healthcare can be confusing and overwhelming. Even well-resourced and supported patients like Jane can struggle to find, understand, and use information and tools to navigate their medical care. For some, entering healthcare systems feels like being conveyed through a well-oiled machine of structure, protocols, and predictable steps. For others, getting healthcare is an anxiety-provoking and befuddling maze.
“Most of us are not seasoned medical advocates,” says Sylvia Baedorf Kassis, MPH, who directs the Health Literacy Program at the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard (MRCT Center). “As healthcare professionals, we can sometimes have a hard time remembering what we didn’t know and what it’s like walking in patients’ footsteps.”
12%
According to the National Assessment of Health Literacy, only 12% of U.S. adults have proficient health literacy skills: the ability to interpret and act on information to make health-related decisions, such as following a checklist or prescription instructions.
According to the National Assessment of Health Literacy, only 12% of U.S. adults have proficient health literacy skills: the ability to interpret and act on information to make health-related decisions, such as following a checklist or prescription instructions. Meanwhile, 35% (tens of millions of Americans) are estimated to have basic or below basic health literacy. Low health literacy also makes people more vulnerable to health myths and misinformation that travel online and in social circles.
The National Institutes of Health recommends materials intended for patients and families be written at the sixth-grade level. However, medical information is often presented at a 10th, 12th, or higher-grade reading level. Some materials use jargon, unfamiliar acronyms, or complex phrases perplexing to people with no medical background or with limited English proficiency.
“Many people come into this large institution because they are dealing with something scary related to their health,” says Baedorf Kassis. “We need to reduce their cognitive load while they are trying to process complex or worrisome terms and information. We need to help people preserve their energy to deal with what matters most.”
Leave no one behind
Baedorf Kassis is passionate about health literacy and improving patient communication, inspired by her experience as a volunteer in the Brigham’s Emergency Department. Today, her work at the MRCT Center tackles this problem in clinical research—an environment full of technical language meant for scientific experts, not the public.
“While individual health literacy and a person’s ability to understand the medical system are important, healthcare organizations have a responsibility to be more patient-centered,” she explains.
To help people make sense of the medical system, virtually every department at the Brigham is improving the user-friendliness of its services, policies, and messaging to ensure no one gets left behind.
While individual health literacy and a person’s ability to understand the medical system are important, healthcare organizations have a responsibility to be more patient-centered.
Sylvia Baedorf Kassis, MPH
Baedorf Kassis adds, “There’s a lot of work being done, but we have a long way to go to make our healthcare environment equitable, where everyone gets what they need and feels welcomed and heard.”
Deciphering digital tools
Not long ago, digital tools like telehealth, electronic health devices, and online patient portals were considered add-ons to traditional in-person care. Initially, these tools mainly benefitted people who were already comfortable with technology.
“Then the pandemic hit,” says Jorge Rodriguez, MD, a hospitalist at the Brigham. “The push to deliver more remote care and create efficiencies in the system made it necessary for all patients to connect to digital platforms—many for the first time.”
Rodriguez is one of the Brigham’s leading digital health investigators. He is especially interested in digital health equity, recognizing that people with limited English proficiency, fewer financial resources, disabilities, and other circumstances can have more trouble accessing technology.
Across Mass General Brigham (MGB), the online portal called Patient Gateway is the digital home for everything related to a patient’s care: scheduled appointments, test results, messages with clinicians, visit summaries, billing statements, and even their complete health records.
Giving patients a comprehensive view of their medical information, available anytime in a secure digital space like Patient Gateway, has many benefits. But what if a patient doesn’t have reliable internet, a computer or smartphone, or the ability to navigate the user enrollment process? What if they can’t troubleshoot a virtual visit that isn’t launching correctly?
Pictured left to right: Ariel Gonzalez, Anaam Husein, Carla Flores, Janelle Vargas, Sheriden Hu, Christen Wilson (no longer at MGB), Jessica Batista, Janine Mendy, Claudia Garcia, Carlos Rodriguez, and Lovely Merdelus
“Today, virtual visits and Patient Gateway are the digital front door to a person’s healthcare experience,” says Rodriguez. “The problem is many people trying to open that digital front door discover they don’t have the keys.”
Lee Park, MD, MPH, is the chief patient experience officer at MGB. She, Rodriguez, and others across the system see a gap between patients who use the portal and those who do not.
“A higher percentage of white patients are on Patient Gateway compared with Black and Hispanic patients,” Park says. “The gap has narrowed over time, but we continue to look for ways to close it.”
Getting connected for good
Under MGB’s United Against Racism initiative, Park and her colleagues took a multi-pronged approach to address gaps and barriers patients face. They translated Patient Gateway into the top six languages spoken by MGB patients in addition to English: Arabic, Chinese, Haitian Creole, Portuguese, Russian, and Spanish. They are also training digital access coordinators to help patients use the tools and receive devices and internet access as needed.
Digital access coordinators help patients across the MBG system get connected, whether signing into Patient Gateway or using a wireless blood pressure cuff for hypertension management, either over the phone or by training patients in clinic waiting rooms.
Even with all these resources and supports, Rodriguez cautions that technology deployed equitably cannot eliminate all disparities.
“Health disparities are driven by many big-picture things going on in a person’s life,” Rodriguez says. “Sometimes, we have to step back and ask if more technology is always the right solution. A patient who solves their technology access issue may also be living with food or housing insecurity. As a system, we need to continue listening to patients to find the right balance of resources that will be meaningful for them.”
Digital access coordinators help MGB patients get connected to Patient Gateway, telehealth visits, and digital health devices. (Photos by AJ Wattamaniuk)
When a housing crisis threatens healthcare
For many people in the Boston area, the crisis of housing insecurity or loss can make it impossible to tend to health concerns—especially a critical illness.
“It is tough to get a patient’s blood pressure under control if they are worried about where they are going to sleep,” says MaryCatherine Arbour, MD, MPH, medical director of the Primary Care Social Care Team. “A person’s health is extremely at risk if their housing is unstable. Since the pandemic, there has been an enormous increase in housing needs.”
“We’re seeing as many as 500 referrals in a month for patients experiencing housing insecurity,” says Dolores Ortiz, director of the Social Care Team. “The need is overwhelming.”
Many people trying to open that digital front door [to healthcare] discover they don’t have the keys.
Jorge Rodriguez, MD
Ortiz recalls one patient who was in the middle of cancer treatment and newly using a wheelchair when her landlord terminated her lease. The landlord cited a technicality in the rental agreement, but the underlying motivation was to avoid installing a ramp or paying for other improvements to make the apartment accessible.
“It is awful that patients facing eviction are forced to contend with that over a serious health situation they might also be dealing with,” Ortiz says. “And when discrimination is at work, many patients and families don’t have the resources to fight it.”
Springing to action
The Social Care Team has been working overtime to ensure patients at imminent risk of being unhoused get the support they need to maintain or secure safe, affordable housing. The team has dedicated advocates who help patients navigate complex processes like securing legal counsel, mediating with landlords, applying for rental assistance or reasonable accommodations, and connecting to other resources.
“Partnering with agencies and organizations across the city of Boston is crucial because they are highly specialized in dealing with the specific housing issues people face—we become the connector,” Ortiz says.
“We urge all clinicians to screen their patients for social determinants of health, including housing needs,” she notes. “That first step sets everything in motion and helps us make a difference in patients’ lives.”
The Social Care Team is also building evidence that health outcomes improve when screenings for social determinants of health identify needs for housing interventions. Led by Arbour, primary care investigators found patients who were unhoused, facing eviction, or living in unsafe housing conditions and who then received integrated support from the Social Care Team had fewer outpatient visits, reported better physical and mental health, and felt more connected to their healthcare clinic and clinical team.
“Our housing advocates are amazing,” Arbour says. “Their ability to connect with patients in very stressful situations and provide them with empathy, respect, and compassion makes a big difference.”
Inviting patients’ expertise
Human connection is essential to addressing the specific needs of patients and their families.
“People sometimes feel alone dealing with healthcare situations, but it is important for them to know they are not alone,” says Lynne Blech, senior manager of Patient and Family Relations. “As a Brigham community, how can we work collectively to improve patients’ experiences and help them feel empowered instead of overwhelmed?”
Blech’s team is on the front line of gathering patients’ feedback—positive and negative.
As a Brigham community, how can we work collectively to improve patients’ experiences and help them feel empowered instead of overwhelmed?
Lynne Blech
“We are constantly learning from our interactions with patients,” she says. “We always want to be open and honest—whether over the phone, in letters, or in family meetings between staff, patients, and their loved ones. We are there to answer any question and do everything we can to address and respond to concerns.”
Blech emphasizes that any genuine effort toward patient-centered care hinges on the core principles of encouraging dignity and respect, participation, collaboration, and transparent information sharing. Patients and families must have a seat at the table in conversations about improving their healthcare experiences.
“Every patient comes into the system with a PHD: a personal history of their disease or lived experience,” adds Martie Carnie, a senior patient advisor and co-chair of the Brigham’s Patient and Family Advisory Council Steering Committee. “We may not be familiar with medical jargon, and some of us can be intimidated coming into this world of healthcare professionals, but our stories and narratives have value.”
Carnie has helped steer many patient-driven improvements over her 30 years as a patient advisor to the Brigham—including health literacy projects in clinical research. She and other advisors have spearheaded changes across the hospital, including improving the Emergency Department’s registration experience during surges, supporting screening for intimate partner violence during telehealth visits, and helping design more inclusive crib cards in the NICU.
The Brigham is working to establish Patient and Family Advisory Councils in all clinical areas to ensure patient perspectives are represented everywhere they go.
“We remind them that their voices matter and they can make a difference,” Carnie says. “I have faith and hope we can move forward with all these lessons we’ve learned through the pandemic to serve our community in more meaningful ways.”
Responses matter
While MGB and the Brigham are sprawling systems, they are fueled by human experiences. Blech says everyone who walks through the systems’ doors brings a unique personality, lens, and understanding of health situations.
“And when patients can’t speak for themselves, their loved ones become critical care team members,” she adds. “Our true north is respecting everyone’s perspective.”
This abundance of viewpoints and mounting pressures across the healthcare industry suggest hospital and system improvements can emerge by staying open during difficult situations. Blech notes the fervent desire among Brigham staff to be proactive in finding ways to make patients’ experiences easier.
“Responding to challenges requires hearing and understanding all points of view,” she says. “In our Brigham community, we do that with respect, neutrality, and without judgment. And we always lead with curiosity.”
