Artificial intelligence (AI) is quickly transforming the healthcare landscape from helping to diagnose diseases to assisting in surgery. Its rapid progression has the potential to transform how healthcare teams work by streamlining processes and improving patient outcomes.

As AI is used more in healthcare, researchers stress that the technology should be a tool guided by bioethical principles and safeguarded by human decision-making.

Focusing on ethics from the start, not as an afterthought, is crucial for the responsible development of AI-driven tools and also for ensuring that healthcare teams feel at ease using AI for patient well-being.

"Often ethics are seen as a 'nice to have' or [brought in] as triage when an AI system has an unintended negative consequence," says Barbara Barry, Ph.D., a healthcare delivery researcher in the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery. Dr. Barry is also a member of Mayo's Artificial Intelligence Bioethics Advisory Council.

Dr. Barry emphasizes that using AI in clinical practice will augment physicians' work in several ways, including determining prognoses, diagnosing conditions, reducing diagnostic errors and treatment, improving workflow efficiency through chart summarization and order automation, and expanding access for patients by delivering care without a physician's visit.

But that does not mean a physician does not need to be in the picture.

"One of the ethical issues that physicians and other clinicians may encounter as AI is integrated into healthcare is the role of professional authority," says Michelle McGowan, Ph.D., an empirical bioethicist whose research explores the ethical and social implications of the rapid increase in emerging health technologies and policies. She is a senior associate consultant in the Department of Quantitative Health Sciences at Mayo Clinic.

"As machines increase capacity to analyze data, propose diagnoses or predict treatment responses, it will be incumbent upon physicians to ensure that their judgment is not substituted in ways that could jeopardize patient care and introduce potential liabilities," she says.

Another concern is the recent advancement of large language models (LLMs). These powerful AI tools are trained on massive amounts of data, giving the models the ability to analyze and generate human-like language. In healthcare research, LLMs are used to sift through vast amounts of medical records and scientific literature. While there are many positives that can come from applying AI in this manner, it is critical to use it responsibly and always review and evaluate its predictions.

"A big concern is the burden of human oversight and automation bias when we follow a recommendation from an AI system because it has been accurate in the past," says Dr. Barry.

"It’s like when we follow our GPS navigation system in a car even when we know a better route or when common sense tells us otherwise."

Evaluating the effectiveness of a large language model

With the promise of what AI can help achieve, the Kern Center is working with Cardiovascular Medicine on a pilot study to evaluate the effectiveness of a Mayo-created LLM that generates a discharge summary from electronic health record (EHR) data for clinicians to review.

Usually, staff must put in considerable time and effort to produce an informative and accurate document summarizing each patient's hospital stay and discharge recommendations.

"If this LLM works as intended, it could save providers a lot of time," says Shannon Dunlay, M.D., a heart failure cardiologist and the Kern Center's associate medical director. However, Dr. Dunlay says the team needs to review how accurate and complete the reports are before recommending it for widespread use.

Researchers emphasize that it is important for providers and patients to have support as AI tools are introduced into healthcare.

Fundamental to the ethical use of AI is rigorous evaluation.

"Traditional evaluation focuses on technical performance metrics, such as prediction accuracy, which is an essential initial step," says Xiaoxi Yao, Ph.D., the Robert D. and Patricia E. Kern Scientific Director for Pragmatic Trials and Evaluation.  "However, subsequent evaluations should delve deeper, considering usability, acceptability among end users in everyday practice, and the effect on care delivery and patient outcomes."

In addition to rigorous evaluation, researchers underscore that patients want transparency when AI is used in their care.

"They want to know the performance of the AI tool, if it has been created with data from patients like them, if it has been proven to be safe in clinical trials, and if the tools are equitable and used justly, not only in their care but also in the care of others," says Dr. Barry.

About Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery
The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery collaborates with clinical areas across Mayo to create and evaluate data-driven solutions to transform the experience of health and healthcare for patients, staff, and communities. It drives continuous improvement of Mayo Clinic as a learning health system, enabling always safe, evidence-based, high-quality care.

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Researchers discover new molecular drug targets for progressive neurological disorder

Progressive supranuclear palsy (PSP) is an uncurable brain disorder marked by walking and balance difficulties. Its symptoms mimic Parkinson's disease and dementia. Mayo researchers and collaborators have outlined new therapeutic targets that may lead to future treatments for PSP as well as Alzheimer's disease and related disorders.

"This research enhances our understanding of progressive supranuclear palsy and other related, incurable neurological disorders," says the study's senior author, Nilufer Ertekin-Taner, M.D., Ph.D., a Mayo Clinic neurologist and neuroscientist. "Moving forward, we can target these specific genes or others that are biologically related to them to develop a potential treatment for this untreatable disease."

Mapping cell behaviors in high-grade glioma to improve treatment

High-grade gliomas are cancerous tumors that spread quickly in the brain or spinal cord. Mayo Clinic researchers found invasive brain tumor margins of high-grade glioma contain biologically distinct genetic and molecular alterations that indicate aggressive behavior and disease recurrence. They also found that MRI techniques, such as dynamic susceptibility contrast and diffusion tensor imaging, can help distinguish between the genetic and molecular alterations of invasive tumors, which is important for clinically characterizing areas that are difficult to surgically biopsy.

"We need to understand what is driving tumor progression," says lead author Leland Hu, M.D., a neuroradiologist at Mayo Clinic. "Our results demonstrate an expanded role of advanced MRI for clinical decision-making for high-grade glioma."

Researchers identify new criteria to detect rapidly progressive dementia

Rapidly progressive dementia (RPD) is caused by several disorders that quickly impair intellectual functioning and interfere with normal activities and relationships. If patients' symptoms appear suddenly causing rapid decline, a physician may diagnose RPD. These patients can progress from initial symptoms of dementia to complete incapacitation, requiring full-time care, in less than two years. Mayo Clinic researchers have identified new scoring criteria allowing for the detection of treatable forms of RPD with reasonably high confidence during a patient's first clinical visit. This scoring criteria may allow physicians to substantially reduce the time it takes to begin treatment. 

"Many conditions that cause rapidly progressive dementia can be treated and even reversed. We found that more than half of the patients in our study with rapidly progressive dementia had a treatable underlying condition. We may be able to identify many of these patients early in the symptomatic course by intentionally searching for key clinical symptoms and exam findings and integrating these with results of a brain MRI and spinal tap," says the study's senior author, Gregg Day, M.D., a clinical researcher at Mayo Clinic.

Global consortium to study Pick’s disease, rare form of early-onset dementia

Pick's disease, a neurodegenerative disease of unknown genetic origin, is a rare type of frontotemporal dementia that affects people under the age of 65. The condition causes changes in personality, behavior and sometimes language impairment. In patients with the disease, tau proteins build up and form abnormal clumps called Pick bodies, which restrict nutrients to the brain and cause neurodegeneration. Researchers at Mayo Clinic and collaborators worldwide have established the Pick's Disease International Consortium to study a specific MAPT gene variation known as MAPT H2 that makes the tau protein and acts as a driver of disease. They investigated a connection between the gene and disease risk, age at onset and duration of Pick's disease. 

"We found that the MAPT H2 genetic variant is associated with an increased risk of Pick's disease in people of European descent," says Owen Ross, Ph.D., a Mayo Clinic neuroscientist and senior author of the paper. "We were only able to determine that because of the global consortium, which greatly increased the sample size of pathology cases to study Pick's disease."

Moments of clarity in the fog of dementia

Researchers define lucid episodes as unexpected, spontaneous, meaningful and relevant communication from a person who is assumed to have permanently lost the capacity for coherent interactions, either verbally or through gestures and actions. A study surveyed family caregivers of people living with dementia and asked them about witnessing lucid episodes. 

"We have found in our research and stories from caregivers that these kinds of episodes change how they interact with and support their loved ones — usually for the better," says lead author Joan Griffin, Ph.D. "These episodes can serve as reminders that caregiving is challenging, but we can always try to care with a little more humanity and grace."

Untangling the threads of early-onset dementia

Changes in personality, behavior and language are hallmarks of frontotemporal dementia (FTD), the most common form of dementia in patients under the age of 65. New research provides insight into the role a specific gene and the protein it produces play in the development and progression of FTD, which is associated with degeneration of the frontal and temporal lobes of the brain. The researchers think the key may lie in the formation of fibrils, or tiny fiber-like structures produced by part of this protein, that sometimes get tangled up in the brain.

"We also think that these fibrils could one day serve as biomarkers to help clinicians determine FTD prognosis or severity, " says Jordan Marks, an M.D.–Ph.D. student with the Mayo Clinic Graduate School of Biomedical Sciences.

Mayo Clinic researchers' new tool links Alzheimer's disease types to rate of cognitive decline

Through a new corticolimbic index tool that identifies changes in specific areas of the brain, Mayo Clinic researchers discovered a series of brain changes characterized by unique clinical features and immune cell behaviors for Alzheimer's disease, a leading cause of dementia.

"By combining our expertise in the fields of neuropathology, biostatistics, neuroscience, neuroimaging and neurology to address Alzheimer's disease from all angles, we've made significant strides in understanding how it affects the brain," says Melissa E. Murray, Ph.D., a translational neuropathologist at Mayo Clinic. "The corticolimbic index is a score that could encourage a paradigm shift toward understanding the individuality of this complex disease and broaden our perspective. This study marks a significant step toward personalized care, offering hope for more effective future therapies."

New research platform assesses brain cancer mutations during surgery

Brain cancer is difficult to treat when it starts growing, and a prevalent type, known as a glioma, has a poor five-year survival rate. Mayo Clinic researchers report on a new surgical platform used during surgery that informs critical decision-making about tumor treatment within minutes. Time is of the utmost importance when dealing with aggressive malignant tumors.

The researchers say that, in addition to enabling real-time diagnosis, the platform allows surgeons to determine a patient's prognosis and perform tumor resection to improve patient outcomes.

“We will be able to bring the fight against cancer to the operating room, before chemotherapy and radiation treatments begin, and before the disease has progressed and invaded further," says the study's senior author, Alfredo Quiñones-Hinojosa, M.D.

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Cancer is a life-altering diagnosis requiring complex care that can last months, years and, for some people, the rest of their lives. Studies show that people undergoing cancer treatment can spend as much as 10% of their time traveling to and from medical facilities and at appointments for therapies, lab work or scans.

Through collaboration and innovation, Mayo Clinic's Cancer Care Beyond Walls program is transforming care delivery to allow some patients to receive part of their cancer care from the comfort of their own homes while integrating digital technology and remote patient monitoring capabilities to improve clinical outcomes.

Watch: Transforming cancer care with treatments at home

"What we have realized is that as cancer care becomes more complex, it becomes more fragmented," says Dr. Jeremy Jones, a Mayo Clinic Comprehensive Cancer Center medical oncologist. "Patients end up spending far more of their time undergoing testing and treatments, which can be a great detriment on quality of life."

Cancer Care Beyond Walls is built upon Mayo Clinic's Advanced Care at Home capabilities, which replicate hospital-quality care in a patient's home. Cancer Care Beyond Walls has built upon these capabilities to create a new paradigm for outpatients that allows the care team to administer chemotherapy, perform lab draws and conduct telehealth appointments in the patient's home — addressing barriers to care, including financial constraints, time limitations or travel ability.

Dr. Roxana Dronca, a medical oncologist and the site deputy director of Mayo Clinic Comprehensive Cancer Center in Florida, explains Cancer Care Beyond Walls is changing how patients navigate their care.

"Cancer Care Beyond Walls gives more people access to cancer care and to clinical trials no matter where they live, reducing the financial and time burden on patients and their families and improving quality of life," says Dr. Dronca. "Providing cancer care in the home for people who are part of this program allows other people with cancer the opportunity to receive treatment in the clinic because more infusion chairs and beds are now available. The program is also designed to reduce a participant’s number of visits to the emergency room through symptom assessment and prompt management."

Maria Holmes, a retired business owner living in Jacksonville, Florida, spends her day on the move. She saw Cancer Care Beyond Walls as an opportunity to stay engaged with activities she enjoys and people she loves.

"I'm able to be with my sister," says Maria. "It is just such a convenience that I could go off and check my time, and say, 'OK, my nurse is going to be here at 9 a.m.,' pop in, get my chemotherapy infusion, and then go back out and continue my walk."

The program allows Bart Tragemann to miss fewer days as an elementary school physical education instructor.

"This program of getting your chemotherapy at home has changed my life," says Bart. "It frees up my time and allows me to do things that I never thought I would be able to do again. My quality of life has changed significantly to a point where I never thought I'd be."

Bart's wife, Erin Tragemann, says treatments at home allow them to spend time with family and make plans that previously had to be arranged around visits to medical facilities.

"Being on this path that we're on right now — being stable right here at home and able to do all the things that we've been talking about doing and going to do them, looking forward to things and going to plan vacations and futures — it's just exciting and wonderful," says Erin.

For Dr. Dronca, the mission of Cancer Care Beyond Walls is personal.

"My daughter, my seemingly healthy 6-year-old daughter, was diagnosed with an inoperable brain tumor in 2020," says Dr. Dronca. "As an oncologist, I was convinced that we can do more. As a mom, I would have given everything, even if a few blood tests were done at home, and we would not have to travel. Even if 1 in 5 infusions were done in the home, we would not have to go through all this."

Dr. Dronca hopes the program will yield an improved quality of life for people with cancer and their families.

"After my personal experience and after my daughter losing her battle with this disease, I'm even more determined that I will fight it with everything I can," says Dr. Dronca. "I will fight it by changing the way we deliver care and making it more comfortable for our patients, and I won't stop until we cure cancer."

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While melanoma may be found less frequently in people with darker complexions than fair ones, this potentially serious form of cancer can strike anyone. The study, which consisted of 492,597 patients with melanoma, suggests that added vigilance in early screening is particularly needed for Black men, whose cancers are often found at later stages, leading to worse outcomes compared to white patients.

"We compared non-Hispanic Black patients to white patients and saw striking differences in how patients presented with the disease," says surgical oncologist Tina Hieken, M.D., senior author of the study and a researcher at Mayo Clinic Comprehensive Cancer Center. "We saw more extremity melanoma, and more later-stage disease."

Extremity melanoma refers to skin cancer that can develop on the arms, legs, hands and feet. Various factors, including social risk factors and biological components, could be at play, but further research is needed to help determine why these differences exist.

Revealing differences in sex-based immune response

The research found that Black female patients with melanoma fared better than Black male patients.

Men tended to be older at diagnosis and more likely to have cancer that had spread to their lymph nodes compared to women. This translated to worse survival rates. The researchers learned that Black men with stage 3 melanoma have only a 42% chance of surviving for five years, compared to 71% for Black women.

Most research on melanoma hasn't focused on how race and sex affect outcomes and hasn't looked at the influence of race and ethnicity across all groups. Dr. Hieken says the study highlights the need to understand these differences better, noting that this is the first large study to confirm that sex‐based differences in melanoma outcomes exist within the non-Hispanic Black population.

"When we talk about later-stage melanoma patients who are female versus male in that non-Hispanic Black patient cohort who ended up doing worse, some biological things may be going on here that are interesting," says Dr. Hieken.

One theory centers on variations in immune response.

"Several immune signals suggest that women may respond better to some immunotherapies than males," says Dr. Hieken.

Identifying the need

Researchers note that more studies focused on melanoma in a broader range of people, including more Black participants in clinical trials, is key to bridging this knowledge gap and potentially identifying more effective treatments.

"We want to broaden and deepen our reach to better understand the disease that affects all patients," says Dr. Hieken.

She underscores the role played by the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery in this study. 

"What we've done with the Kern Center, with this study and others, is to identify the need," says Dr. Hieken. "We have a rich, integrated, multidisciplinary clinical research practice in melanoma, and we want to address clinical needs and knowledge gaps relevant to our practice."

A wake-up call in the battle against melanoma

Dr. Hieken notes that this study is a wake-up call for everyone battling to diagnose and cure melanoma, regardless of the patient's sex or skin tone.

She emphasizes that healthcare professionals should carefully examine areas like palms, soles and under fingernails, where melanoma might be more challenging to spot on darker skin.

"We can incorporate screening for skin lesions or lesions under the nails into the visit for patients as part of their regular checkups," says Dr. Hieken. "What we want to do is elevate care for our patients."

The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery and Breast and Melanoma Surgical Oncology in the Department of Surgery supported this research. Review the study for a complete list of authors, disclosures and funding.

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About Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery
The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery collaborates with clinical areas across Mayo to create and evaluate data-driven solutions to transform the experience of health and healthcare for patients, staff, and communities. It drives continuous improvement of Mayo Clinic as a learning health system, enabling always safe, evidence-based, high-quality care.

About Mayo Clinic Comprehensive Cancer Center
Designated as a comprehensive cancer center by the National Cancer Institute, Mayo Clinic Comprehensive Cancer Center is defining new boundaries in possibility, focusing on patient-centered care, developing novel treatments, training future generations of cancer experts and bringing cancer research to communities. At Mayo Clinic Comprehensive Cancer Center, a culture of innovation and collaboration is driving research breakthroughs that are changing approaches to cancer prevention, screening and treatment, and improving the lives of cancer survivors.

Media Contact:

• Vincent Jacobbi, Mayo Clinic Communications, newsbureau@mayo.edu

Learn more:
Mayo Clinic Minute: Melanoma misconception — dark skin tones at risk too
Mayo Clinic Minute: Men need to take melanoma seriously

The post Melanoma in darker skin tones: Race and sex play a role, Mayo study finds appeared first on Mayo Clinic News Network.

"We want to ultimately understand how we can be proactive in designing spaces that are conducive to resilient performance and supportive of the team’s well-being, especially during extenuating or catastrophic events, so that teams can effectively adopt and continue to perform at their maximum level," says Renaldo Blocker, Ph.D., a human factors engineering researcher and senior author of the study.

Dr. Blocker is the Robert D. and Patricia E. Kern Honored Investigator and leads a research team on cognitive engineering/neuroergonomics within the Mayo Clinic Kern Center for the Science of Health Care Delivery.                                                                                                                

Researchers conducted five focus groups with surgeons, anesthesia providers and allied health staff from three ORs at Mayo Clinic in Rochester. The groups took surveys and performed functional scenario analysis, which involves analyzing real-world scenarios to assess how surgical teams interact with their environment. As part of the discussions, they looked at 3D models of the existing operating rooms.

The survey asked whether the layout of the entire OR area is conducive to the team's sense of well-being and which elements can cause environmental stress.

The top-selected options in the survey were noisy environments, disorganized patient flow, poor lighting and poor room organization, along with a lack of appropriate facilities, medical equipment and support staff.

Researchers note that the focus groups provided a lens into the team's daily experiences and challenges within the operating room, revealing that disorganized patient flow was a key stressor.

They added that design improvements to ensure smooth patient transport, including wider doorways and corridors, would allow for easier maneuvering of patient beds.

The focus groups also revealed that seemingly small details, such as the distance to break rooms and lockers, can significantly affect how surgeons, nurses and other staff feel during a critical shift.

"The beauty of this study is that because we integrated 3D space capture of the OR into the focus group, this jogged participants' memory and they could directly compare layouts and suggest design improvements," says Dr. Blocker.

Researchers discovered that all three operating rooms could be improved by placing equipment and supplies closer to key areas like patient prep and recovery, and by enhancing natural light as well as device screen visibility.

They underscore that by focusing on patient flow, room organization, and the needs of surgical teams, healthcare organizations can create operating rooms that reduce staff burnout and ultimately lead to a more positive work environment and improved patient outcomes.

"We want our methodology to be agile, where we can capture data, conduct analysis and provide impactful and insightful design recommendations swiftly," says Dr. Blocker. "We want to reduce the notion that this type of design research will take forever; our methodology can be done concisely with a relatively quick turnaround."

This study was the result of a collaboration between the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Anesthesiology and Perioperative Medicine, and the Facilities and Support Services Department, as well as experts from several other U.S. and international organizations. Review the study for a complete list of authors, disclosures and funding. 

About Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery

The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery collaborates with clinical areas across Mayo to create and evaluate data-driven solutions to transform the experience of health and healthcare for patients, staff, and communities. It drives continuous improvement of Mayo Clinic as a learning health system, enabling always safe, evidence-based, high-quality care.

The post Optimizing operating room design to support teams and strengthen healthcare delivery appeared first on Mayo Clinic News Network.

In a new nationwide study, Mayo Clinic researchers have shed light on factors contributing to diabetes rates in rural America. Their observational study found people in rural areas were more likely to develop diabetes (higher incidence) and to already have it (greater prevalence) compared to people in urban areas. However, when risk factors that can be changed, such as inactivity and obesity, were accounted for, the gap in diabetes prevalence and incidence narrowed, and in some cases, the trend reversed. Higher levels of inactivity and obesity were the strongest predictors of higher diabetes rates.

These findings suggest that rural Americans can make a big difference in their risk for diabetes with the right resources, including targeted medical and lifestyle interventions promoting healthy behaviors. In addition, these interventions could improve diabetes prevention for all people, no matter where they live.

Sagar Dugani, M.D., Ph.D., the study's first author, says that future research will focus on the best strategies for addressing diabetes risks in rural populations.

When the researchers analyzed diabetes rates in different regions of the country, they found different associations between how rural a community was and its diabetes incidence rates. These findings suggest that tailored approaches may be needed to meet the diverse needs of rural communities and reduce diabetes-related disparities.

Adrian Vella, M.D., the study's senior author, says the study also emphasizes that taking care of diabetes involves more than just medication.

"Diabetes care also requires a suitable care environment and infrastructure," says Dr. Vella. 

Diabetes is a chronic health condition that requires lifelong care. It is also the costliest chronic condition in the U.S., expected to affect 1 in 3 Americans in their lifetime. In the U.S., 15% of the population lives in rural areas and experiences a wide range of health disparities.

The researchers say that, to their knowledge, this study is the most comprehensive report on the relationship between rurality and the incidence and prevalence of diabetes in the U.S. The study used U.S. Centers for Disease Control and Prevention (CDC) data from 2004 through 2019 to generate estimates of the incidence and prevalence of diabetes across the U.S. in 3,148 counties.  This investigation is part of a growing body of Mayo Clinic research, including this study on diabetes-related deaths, focused on understanding and finding solutions for rural health disparities.

Past studies have shown that interventions designed to promote physical exercise and improve access to healthy food helped to prevent diabetes, the researchers note.

"We plan to engage people, communities, researchers and policymakers to design comprehensive strategies for diabetes care," says Dr. Dugani.

Dr. Dugani is an academic hospitalist at Mayo Clinic and associate director of the Community-Engaged Research Program in the Mayo Clinic Center for Clinical and Translational Science.

Dr. Vella is the Earl and Annette R. McDonough Professor of Medicine in the Division of Endocrinology, Diabetes, Metabolism and Nutrition.

Review the study for a complete list of authors, disclosures and funding.

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A recent Mayo Clinic study investigated how telehealth in palliative care may provide value for rural caregivers, healthcare teams and their patients. Palliative care is specialized medical care that focuses on providing relief from pain and other symptoms of a serious illness.

Researchers were particularly interested in determining what billing models were most cost-effective and sustainable for healthcare teams and caregivers transitioning patients from hospital to home care.

The study tested an 8-week program for rural caregivers of patients receiving palliative care. During that time, the caregivers interacted with registered nurses via video, receiving education, support and counseling.

Strengthening rural healthcare delivery

"For the study, we were trying to figure out what the cost of the intervention was compared to usual care and, if the intervention was effective, how cost-effective it would be to roll out more widely," says Joan Griffin, Ph.D., senior author of the study.

Researchers identified three Medicare reimbursement billing codes that could be used for reimbursement of this caregiver-focused telehealth effort that would be appropriate, manageable and acceptable to Medicare and Medicaid.

They then weighed the potential costs of the program versus those potential reimbursements to evaluate the overall impact of making such a program part of routine care.

"We're beginning to make some headway into possibly getting effective interventions into practice because there are now options for healthcare systems and providers to be reimbursed for these efforts," says Dr. Griffin.

According to Dr. Griffin, healthcare professionals involved in the intervention reported favorable experiences, revealing the potential for such a program to improve caregiver support and patient experiences.

Finding the greatest need

Dr. Griffin emphasizes that identifying avenues to reimbursement for programs like this ultimately will help caregivers and their healthcare teams face the challenges surrounding patients under palliative care.

"What healthcare professionals can take away is that there are strategies and avenues for interacting and connecting with family caregivers that are reimbursable and that the cost attached to this type of research may be less than people at first glance think," says Dr. Griffin. "When we start looking at the next steps for this study, our biggest challenge will be to figure out who is in greatest need of this type of intervention and how we direct these types of services to those people."

The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery supported this research. Review the study for a complete list of authors, disclosures and funding.

About Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery

The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery collaborates with clinical areas across Mayo to create and evaluate data-driven solutions to transform the experience of health and healthcare for patients, staff, and communities. It drives continuous improvement of Mayo Clinic as a learning health system, enabling always safe, evidence-based, high-quality care.

The post Telehealth study on reimbursements for rural healthcare delivery appeared first on Mayo Clinic News Network.

A recent Mayo Clinic study published in Alzheimer's & Dementia: The Journal of the Alzheimer's Association investigated lucid episodes in people living with later stages of dementia, providing insights into how these occurrences reveal themselves.

The findings showed that 75% of people having lucid episodes were reported to have Alzheimer’s Disease as opposed to other forms of dementia.

Researchers define lucid episodes as unexpected, spontaneous, meaningful and relevant communication from a person who is assumed to have permanently lost the capacity for coherent interactions, either verbally or through gestures and actions.

Family caregivers of people living with dementia were surveyed and asked about witnessing lucid episodes. Researchers then classified the episodes into types.

The study aimed to determine if there were distinct patterns or types of lucid episodes that could be used to understand why or when they happen.

"We determined the types of episodes based on the circumstances surrounding the episode, the quality of the communication during the episode, how long it lasted, the level of cognition of the person living with dementia before the episode and the proximity to death," says Joan Griffin, Ph.D., lead author of the study.

The findings revealed that of those having lucid episodes, 61% were women, with 31% living in the same household as the caregiver who responded to the survey.

"We know these lucid episodes are happening, but we didn't know if there are different types of episodes that happen at different times or under different circumstances," says Dr. Griffin.  "This study helped clarify that different types of episodes likely exist."

Contrary to findings from previous research, the conclusions of this study challenge the idea that lucid episodes may signal impending death.

"It's important for people to know that these are not necessarily harbingers for death," says Dr. Griffin.  “I think people can get anxious when they happen, so it's good to know that there are different kinds of episodes that don’t necessarily mean death is imminent."

Dr. Griffin notes that researchers now are conducting a longitudinal study to better understand lucid episodes and how caregivers react to them and take meaning from them. Longitudinal studies allow researchers to track changes or behaviors over time and to identify any relationships between these changes.  

"With this new study, we'll be able to understand better what patterns exist and determine the consequences of the episode over time," explains Dr. Griffin.

Showing compassion for caregivers and their loved ones

Dr. Griffin underscores the need to understand these episodes to help caregivers with their work and remind them of the cognitive and emotional potential of people living with dementia.

"Caregivers of people living with dementia must manage a long list of challenges and it can be overwhelming," says Dr. Griffin. "Perhaps understanding these episodes can help lighten that load."

"We have found in our research and stories from caregivers that these kinds of episodes change how they interact with and support their loved ones — usually for the better," she adds. "These episodes can serve as reminders that caregiving is challenging, but we can always try to care with a little more humanity and grace."

The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery supported this research. Review the study for a complete list of authors, disclosures and funding.

About Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery

The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery collaborates with clinical areas across Mayo to create and evaluate data-driven solutions to transform the experience of health and healthcare for patients, staff, and communities. It drives continuous improvement of Mayo Clinic as a learning health system, enabling always safe, evidence-based, high-quality care.

The post Moments of clarity in the fog of dementia appeared first on Mayo Clinic News Network.

From the time she was a young woman, Gladys Asiedu, Ph.D., knew she wanted to help people. Her path to achieving that goal began in Ghana. Learn about her journey and the difference she is making as a diversity science researcher.

Gladys Asiedu, Ph.D., always knew she wanted to make a difference in people's lives. A steady focus on that altruistic goal would ultimately lead her to Mayo Clinic.

As a child in Ghana in West Africa, she didn't know what that would mean, or how she would get there.

She received her undergraduate degree in English and religious studies from the University of Cape Coast in Ghana. In 2004, she and her family landed in Manhattan, Kansas, where she pursued graduate education at Kansas State University, receiving a master's in family studies and human services, a Ph.D. in family studies, and a graduate certificate in women's studies.

Her research career in Kansas began with a question: What happens when you or someone you love is diagnosed with HIV or AIDS? What are the mental and social impacts on patients and their families? And how do those impacts affect treatment?

A passion for equity in the pursuit of health and wellness

Dr. Asiedu's experience in international and community health programs before coming to the U.S. gave her firsthand knowledge of the devastating effects of such a diagnosis on underprivileged and underserved populations.

In both her master's thesis and Ph.D. dissertation, Dr. Asiedu argued that HIV/AIDS-related stigma and discrimination is not something that affects just one person or one family. It is a systemic issue that affects the health and well-being of a whole community, as well as healthcare providers and care systems.

Dr. Asiedu observed that this stigma was fueled by misinformation and limited understanding of science, and she proposed that education was the first step to averting fears related to the disease.

"An aspect of our human survival mechanism is to fear the unknown and to stigmatize it," says Dr. Asiedu. "Some of the findings of the research illuminate the misconceptions, misinformation and limited knowledge of HIV that fueled the stigmatization of those diagnosed with the disease."  

Her dissertation expanded on this finding and illustrated that community-based, participatory research — a newly emerging concept at the time — was an effective way to identify potential interventions.

A continuing focus on community

In 2010, Dr. Asiedu moved to Rochester, where she hoped to help build a world where people would have equitable experiences and opportunities to live their healthiest and happiest lives.

Mayo didn't initially seem like a promising place to pursue her passion, with sparse ongoing social science research at the time.

"But there is always a first time, and in the first year, I worked with Dr. Sandhya Pruthi in Women's Health, who was crafting cancer screening interventions tailored to the culture and beliefs of low-income women in the Southeastern communities to increase rates of breast cancer screening," Dr. Asiedu says.

"Then I did a postdoc in health services research with Dr. Carmen Radecki Breitkopf, looking at disparities in common cancer screenings, preventive and therapeutic care," she says.

That's when she began to think Mayo might hold opportunities for the kind of work she wanted to pursue.

Diversity science

Today, Dr. Asiedu is a leading researcher in the new Diversity Science Program of the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery.

Program Director Renaldo Blocker, Ph.D., Dr. Asiedu and other colleagues defined diversity science at Mayo. They started by thinking about the biases and inequities in the U.S.

"We were initially moved by our own experiences and the experiences of our colleagues, and were passionate about effecting change in our workplace and community," says Dr. Asiedu. "We became passionate about addressing this for our own institution and wanted to do good in the workforce space.  But after the murder of George Floyd, it grew beyond the initial vision."

Mayo Clinic pledged $100 million to eliminate racism, advance equity and inclusion within Mayo Clinic, and improve health equity for people everywhere.

"This pledge from Mayo signifies the investment that the organization has in advancing equity, and that meant so much for what we wanted to do," says Dr. Asiedu. "So it was incumbent on us to define our tasks within the commitment that Mayo made and to reimagine how we approach diversity at Mayo."

That meant revisiting how to design diversity, equity and inclusion efforts, and health equity studies in a more scientific and rigorous manner, and ensuring that diversity, equity and inclusion research and discoveries by Mayo happen in a systematic, scientifically sound manner.

"We created the Diversity Science Program to be a hub for scientists and practitioners who wanted to work in this space but needed the guidance, consults and strategies that could potentially accelerate progress toward inclusivity through research," Dr. Asiedu says.

The team knew their work had to be more than just internal to Mayo. They needed to address the needs of the workforce, patients and community. They had to investigate and build interventions for sustainable transformation inside Mayo and across the global community.

"The fact that this program came into existence signifies our recognition of inequities and inequalities in our world, oppressions and disparities that come from systems of power," Dr. Asiedu says. "Systemic structures and cultural norms that have allowed dominant groups to undermine the value and dignity of members of minority groups.

"Launching the Diversity Science Program showed a renewed commitment by Mayo to conduct the rigorous research that underlies transformation and to share the knowledge gained through investigation and implementation of interventions," says Dr. Asiedu. "It's about time we change the science of characterizing inequities and disparities and move toward impactful science that implements interventions and programs resulting in equity and meaningful outcomes for all groups of people."

For Dr. Asiedu, the birth of the Diversity Science Program also expanded her ability to pursue health equity from myriad perspectives.

Dr. Asiedu invests her research expertise in investigations across all the program focus areas because she feels strongly about holistically examining health and healthcare delivery within larger contexts and identifying ways to improve outcomes and satisfaction among those who experience the most significant disparities.

She derives much satisfaction from her work, which feeds her passion. Her personal life provides more evidence of her commitment to improving the lives of others.

Between the demands of being an "Uber driver" for her school-aged kids, she volunteers for community-building activities in her church. Dr. Asiedu is surrounded by her community of friends and family who inspire and expand on her ideas to make a difference for people in the U.S., her home country, and perhaps the world.

Seeking a new perspective on clinical trial participation among underrepresented minority patients

Together with Katharine Price, M.D., Rahma Warsame, M.D., and others, Dr. Asiedu explored the experiences, motivations, and decision-making of underrepresented minority patients successfully treated in a cancer clinical trial. After reviewing existing literature, they deliberately chose a mixed-methods approach, considering the question from an entirely new angle.

This positive approach acknowledges the existing strengths and everyday experiences of these patients.

"We wanted to gain some idea of barriers and facilitators to clinical trial enrollment through an appreciative inquiry," Dr. Asiedu says.

That meant approaching patients already in a clinical trial and asking, "What are your motivations for participating in this clinical trial?"

The team used surveys and the photo-elicitation interview technique — a visual research method — to explore and understand the motivations and facilitators of trial participation.

"PEI (photo-elicitation interview) is a powerful method for illuminating human experience and surfacing information, which may otherwise remain invisible using conventional approaches," says Dr. Asiedu. "This approach has the potential to alter clinical trial recruitment efforts that include patient-generated visuals of clinical trial experiences that could enhance culturally tailored educational programming."

The authors found that altruism appears to be a significant motivator to enroll in a cancer clinical trial. This message could be incorporated into recruitment strategies to improve the recruitment of diverse patients.

To gain a more comprehensive picture, the study included perspectives from physicians, study coordinators, clinical trial investigators, recruitment personnel and other staff involved in clinical trials to provide important insight into the complex issue of inclusive accrual.

Ultimately, Dr. Asiedu and the team's most critical observation was that clinical trial participation requires a relational approach. It is more than a simple two-party contractual agreement.

"It's not just you, the patient, making the decision. It is a decision for you and your family and friends and together with doctors," she says.

The team expects their study results to be published soon.

Effectively engaging the community to reach vulnerable populations during a public health crisis

Early in the COVID pandemic, Dr. Asiedu worked with two research teams to develop and evaluate a community-engaged bidirectional crisis and emergency-risk communications framework to assist in reaching immigrant communities as well as African Americans in Southeast Minnesota. The researchers knew they needed to work with the communities to identify the paths likely to lead to receptiveness. They needed to refine the messaging in ways that were both palatable and encouraged action while reducing fear and uncertainty.

The two research teams, Rochester Healthy Community Partnership led by Irene Sia, M.D., and Mark Wieland, M.D., and FAITH! led by LaPrincess Brewer, M.D., developed a bidirectional communication approach using the Crisis and Emergency Risk Communication model from the Centers for Disease Control and Prevention to address COVID-19 prevention, testing, and socioeconomic impacts with immigrant, refugee and African American groups in Southeast Minnesota. This communication framework was culturally tailored and adapted to the needs of the immigrant and African American population in Southeast Minnesota.

This communication intervention reached over 40,000 community members in seven different language groups across Olmsted County. Framework implementation also led to systems and policy changes to meet the needs of immigrant, refugee and African American populations.

"The project helped reduce COVID-19 disparities through shared creation and dissemination of public health messages, enhanced connection to existing resources, and incorporation of community perspectives in regional pandemic mitigation policies," says Dr. Asiedu. "The framework has been adapted for use in other communities to encourage participation in healthful health communication to diverse populations."

Read more about the framework:

• Emergency Preparedness and Risk Communication Among African American Churches: Leveraging a Community-Based Participatory Research Partnership COVID-19 Initiative.
• Leveraging community-engaged research partnerships for crisis and emergency risk communication to vulnerable populations in the COVID-19 pandemic.
• Perspectives of African American Church Leaders in Response to COVID-19 Emergency Preparedness and Risk Communication Efforts Within a Community Engaged Research Partnership: COVID-19 Emergency Risk Communication.

Getting big-city care to the bedsides of the tiniest rural patients

Dr. Asiedu worked with Jennifer Fang, M.D., and her team to determine the best way to incorporate remote neonatology consultative support in hospitals without local access to this specialty.

It seemed simple: Add video telemedicine for newborn resuscitation care, thereby lessening rural health disparities and improving the odds of safer deliveries and healthier babies.

The team quickly realized this, too, was about relationships. Local doctors needed to be brought into conversations where they would learn the value of technology in helping them provide the best possible care for their patients. They needed to understand how the process would work, how the neonatologist would integrate with their local team, and how this intervention would improve outcomes. The research turned toward developing an effective outreach and education program that felt empowering for the rural care providers.

Today, Mayo's Teleneonatology Program is available across Mayo Clinic Health System and also supports non-Mayo medical facilities.

Read more about the program:

• Health Care Professionals' Perspectives on Teleneonatology Through the Lens of Normalization Process Theory.
• A Mixed-Methods Study on the Barriers and Facilitators of Telemedicine for Newborn Resuscitation.

Improving care for men with prostate cancer who are also immigrants from sub-Saharan Africa

Most recently, Dr. Asiedu has been working with colleagues at Mayo Clinic Comprehensive Cancer Center to customize another framework — one for understanding the social determinants of migrant health. They hope their work leads to improved care and survivorship experiences for Black men with prostate cancer.

The current investigation is a pilot study among sub-Saharan African immigrants, identifying factors contributing to health-seeking behavior. Their findings advance knowledge in the iCCaRE Consortium, a shortened name for the Inclusive Cancer Care Research Equity for Black Men Consortium.

The team expects to expand the pilot to phase 2 in early 2024, involving other African and Caribbean immigrant communities and expanding collaborations to the University of Texas MD Anderson Cancer Center.

Read more about this collaboration in Cancer Epidemiology, Biomarkers & Prevention.

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The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery collaborates with clinical areas across Mayo to create and evaluate data-driven solutions to transform the experience of health and healthcare for patients, staff, and communities. It drives continuous improvement of Mayo Clinic as a learning health system, enabling always safe, evidence-based, high-quality care.

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Mayo Clinic researchers have identified new scoring criteria allowing for the detection of treatable forms of rapidly progressive dementia (RPD) with reasonably high confidence during a patient's first clinical visit. This scoring criteria may allow physicians to substantially reduce the time it takes to begin treatment. The findings are published in the Annals of Neurology.

Rapidly progressive dementia is caused by several disorders that quickly impair intellectual functioning and interfere with normal activities and relationships. If patients' symptoms appear suddenly and they decline quickly, a physician may make the diagnosis of RPD. These patients can progress from initial symptoms of dementia to complete incapacitation, requiring full-time care, in less than two years.

The study analyzed data from 155 patients with RPD who were diagnosed at Mayo Clinic in Florida and Washington University in St. Louis. The median age of patients at the time of symptom onset was 69 years old. Patients underwent a standard evaluation, including brain MRI, electroencephalogram, blood tests and a spinal tap. They then were followed for up to two years. The study team reviewed the data, assigned clinical diagnoses and determined which diseases would be considered potentially treatment-responsive. The team then compared symptoms and test results between patients with treatment-responsive and non-treatment-responsive causes. This identified key factors that were present at the time of the patient's first visit and were associated with treatment-responsive causes of RPD.

Seizures, tumors, MRI features of autoimmune encephalitis, movement abnormalities and other conditions were each associated with treatment-responsive causes of RPD in the study. Ninety-five percent of patients with these conditions were captured through a screening score developed by the Mayo researchers. The score was calculated by assigning points for clinical findings present during a patient's first visit for evaluation of cognitive decline.

"Many conditions that cause rapidly progressive dementia can be treated and even reversed. We found that more than half of the patients in our study with rapidly progressive dementia had a treatable underlying condition. We may be able to identify many of these patients early in the symptomatic course by intentionally searching for key clinical symptoms and exam findings and integrating these with results of a brain MRI and spinal tap," says the study's senior author, Gregory Day, M.D., a clinical researcher, neurologist and vice chair of research of the Department of Neurology at Mayo Clinic in Florida.

Dr. Day's previous research found that other diseases may mimic a rare brain disorder called Creutzfeldt-Jakob's disease, which also is linked to dementia.

"It's crucial to treat patients sooner by identifying a condition that is causing their rapidly progressive dementia," says Nihal Satyadev, M.D., a neurology resident at Mayo Clinic in Florida and the study's first author. "It's equally important to recognize patients who are less likely to benefit from treatment, as this can allow the focus of care to shift to supporting quality of life and appropriate counseling."

The study authors plan to continue research to improve diagnosis and treatment of patients with RPD, and to make it easier for clinicians to apply their tool to recognize patients with RPD. The team has already completed a project considering spinal fluid biomarkers that may improve diagnosis and early recognition of treatable patients. These findings are also published in the Annals of Neurology.

This research was supported in part by a grant from the National Institute on Aging of the National Institutes of Health under award K23AG064029.

For a full list of authors, funding and conflicts of interest, see the paper.

The post Researchers identify new criteria to detect rapidly progressive dementia appeared first on Mayo Clinic News Network.