Advancing the Science

Mayo Clinic Medical Science Blog – an eclectic collection of research- and research education-related stories: feature stories, mini news bites, learning opportunities, profiles and more from Mayo Clinic.

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Tue, May 21 6:00am · A pregnant pause

In many states, women can expect pregnancy to restrict their advance directives.

Pregnant woman lying in bed receives care from a female doctor and a female nurse.

Search online for what
to do when getting ready for baby and you’ll find endless checklists of
essentials every parent needs, from onesies and diapers to high tech strollers
and baby monitors. The best lists also mention an important legal document that
expectant parents should consider completing before baby arrives: an advance
directive
outlining the mother’s health care wishes should she become
unable to make decisions or speak for herself.

However, according to a report recently published by researchers
at Mayo Clinic and other institutions
in the Journal of the American
Medical Association (JAMA),
what expectant parents often don’t realize – and
what isn’t disclosed, even on most advance directive forms—is that the majority
of U.S. states have laws on the books that restrict or invalidate a pregnant
woman’s advance directive.

These states put a “pause” on these patients’ ability to
control their health care. And they often do not communicate this fact this to
patients, who fill out these forms in good faith.

Erin DeMartino poses, wearing a light blue jacket and a scarf.
Erin DeMartino, M.D.

The purpose of advance directives

Life can change in an instant, and even young adults can face a serious medical condition.  “When you become pregnant, that’s a good time to start looking ahead and thinking about an advance directive,“ says Erin DeMartino, M.D., a pulmonary and critical care physician at Mayo Clinic’s campus in Rochester and first author of the report published in JAMA.

Advance directives safeguard patient autonomy and control
over life-and-death medical decisions that are difficult to foresee. They allow
a patient to name a person who can make health care decisions on their behalf.
They also give a patient the opportunity to state specific medical treatments
they do or do not want.

“It’s ironic, “says Dr. DeMartino, “that when young women are
faced with perhaps their first major medical situation—pregnancy and childbirth—their
control of their own health destiny is often taken away by the State. And
because this fact is usually not communicated on the official state advance
directive documents, patients might not even know it.”

The ethical way forward requires increased transparency

Laws governing life-and-death decisions for pregnant mothers
vary widely state-by-state. According to the report published in JAMA, 38
states have laws that identify pregnancy as a condition that affects decisions
for incapacitated women. 30 of these states restrict a woman’s or her
surrogate’s choice regarding withholding or withdrawing life-sustaining
treatment and 25 states invalidate a woman’s advance directive.  Only 11 states disclose those restrictions on
their advance directive documents.

Map showing limitations on decision making by state.

In this situation, transparency is essential, says
Richard Sharp, Ph.D.
, director of the
Mayo Clinic Biomedical Ethics Research Program.
Patients should always be
informed about potential situations that might prompt an advance directive to
be restricted or temporarily revoked. “These important details should be
spelled out in the forms that patients sign and in the educational materials
that are often distributed to patients when they sign an advance directive,”
says Dr. Sharp.

Map showing communication of restrictions by state

“It’s of fundamental importance that women understand what
they’re signing, “agrees Dr. DeMartino. “If you’re using an advance directive,
there should be no surprises when it comes to making your health care wishes
known or in determining if those wishes will be carried out.” 

Learn more


Thu, Apr 4 6:00am · The lowdown with Dr. Bharucha: Gastroenterology researcher and clinical trials guru

Adil Bharucha, M.B.B.S., M.D.

For Adil Bharucha, M.B.B.S., M.D., research is a passion nurtured over time. A passion, he says, that came to him, not in a dazzling “a-ha moment,” but slowly, through the encouragement of mentors, the exhilarating feeling of discovery, and the compassion he felt for his patients—“through osmosis,” he says.

He began his medical studies at University of Bombay, in India and then came to the United States, where he accepted a residency, then a fellowship, in gastroenterology at Mayo Clinic, and later joined the staff.

Now, 27 years and more than 200 research papers later, he is director of the Office of Clinical Trials, in the Mayo Clinic Center for Clinical and Translational Science.  Under his leadership, the Office of Clinical Trials works with study teams and sponsors to facilitate clinical trials that accelerate the translation of medical discoveries into patient care.

Dr. Bharucha looks back on his career, the opportunities he has been given and the good work he has accomplished, and feels incredibly fortunate. “I did not dream I would have the opportunities I do today,” he says. “I’ve worked hard, but a lot of it feels like serendipity to me. I was at the right place at the right time.”

He was also interested in an area of research—having to do with the digestive system, the intestines, the bowels—which, at the time, wasn’t popular with other scientists. “There was urgent patient need but, frankly, not a lot of enthusiasm from researchers,” he says.  “I saw that as an opportunity to make a difference.”

Mayo Clinic Public Affairs recently sat down with Dr. Bharucha to learn more about his zeal for gastroenterology research and to find out what drives his keen interest in optimizing the conduct of clinical trials


A portable device, invented by Dr. Bharucha and a Mayo colleague, for evaluating patients with constipation or fecal insentience. In the past, these tests were usually performed in specialized laboratories. With this device, the tests can be performed at the bedside, enhancing efficiency and patient satisfaction. The product has been licensed to Medspira, Inc.

How did you become interested in researching gastroenterology?

I became interested in gastroenterology, in part, because of an early interest in neurons. Did you know that the gastrointestinal tract has more neurons than the spinal cord?

When I came to Mayo Clinic as a resident, my advisor, Dr. Gores, saw my passion and my desire to conduct mechanistically-based clinical research studies and suggested I work with Dr. Camilleri, an expert in gastrointestinal motility disorders, such as dyspepsia (indigestion), gastroparesis, irritable bowel syndrome, chronic constipation, and fecal incontinence.

“Doing research has made me a better doctor.”
— Adil Bharucha, M.B.B.S., M.D.

These are some of the most common health conditions, but they’re poorly understood and treatment options are limited.  There’s a lot of patient need in this area, but unfortunately, at the time, there were not a lot of researchers who wanted to pursue these topics. That piqued my interest. I knew I had an opportunity to contribute to finding solutions for patients.


Why do you think it’s important for a doctor to be involved in both patient care and research?

Doing research has made me a better doctor. 

A lot of patients come to Mayo Clinic because they know that doctors, like me, are also involved in researching their conditions. Patients are relieved to hear their symptoms can be explained and that I’m engaged in the search for answers.

In addition, my involvement in research trains my brain to think about problems from many different angles. It often helps me identify out-of-the-box solutions for patients.


Left to right: Gregory Gores, M.D., Kinney Executive Dean for Research; Gianrico Farrugia, M.D., president and CEO; Henry Schultz, , M.D.; Sidney Phillips, M.D. (left); Michael Camilleri, M.D. (right), accepting a teacher of the year award; Rolf Hubmayr, M.D.; Joseph Szurszewski, M.D.

What role have mentors played in your career?

Mentors have played key roles at almost every turning point in my career.

  • I interviewed for my second year residency at Mayo with Dr. Schultz, who embodies the very best of Mayo. I was start-struck and I was convinced I wanted to come here to work.
  • Early on in my career at Mayo, Dr. Camilleri, Dr. Phillips, and Dr. Hubmayr encouraged me to pursue research and helped guide my choices since I didn’t have a formal plan.
  • I received considerable support from mentors when I applied for and received my first National Institutes of Health grants. Receiving those grants provided critical strategic direction for my career, giving me opportunities to focus on epidemiology and the mechanisms of pelvic floor disorders.
  • It was a mentor who convinced me to focus my research on anorectal dysfunctions. I recall vividly the day Dr. Phillips took me aside at a formal dinner to talk me into it. He could be very persuasive.
  • More recently, under Dr. Szurszewski’s and Dr. Farrugia’s leadership, I have been involved in an NIH sponsored study of how diabetes mellitus affects the gastrointestinal tract.

All along the way, mentors have helped guide my choices and have helped make me a better doctor and researcher. They’ve also prepared me for my current leadership position as director of the Office of Clinical Trials.


What is the role of the Office of Clinical Trials in research at Mayo Clinic?

The Office of Clinical Trials supports the Mayo Clinic research priority of strengthening clinical trials by helping Mayo Clinic attract and conduct high-impact trials that bring hope and solutions to patients.

Researchers often encounter unanticipated challenges and roadblocks as they try to get clinical trials activated and off the ground. The office provides resources and support to blast through those roadblocks, as well as expert guidance to keep issues from arising in the first place.  It’s the support I remember getting from my research mentors, but on a much larger scale. We’ve created a whole office focused on this specialized support that is set up to assist researchers across Mayo Clinic.


Why do you think optimizing clinical trials is so important?

Patients are waiting and clinicians are eager to do more amidst their hectic schedules. That’s what motivates me in my leadership of the Office of Clinical Trials. Clinical trials bridge the gap between research and patient care. If the office can help optimize this process, we’ll be able help more patients.

At Mayo Clinic, the research of today is the clinical practice of tomorrow. Many patients come to Mayo because of the opportunity to receive cutting-edge therapy afforded by clinical trials. They come here looking for help they can’t get anywhere else.

Optimizing clinical trials is also good for physicians and scientists. They’re able to partake in research that not only satisfies their intellectual curiosity, but that also is more likely to have an impact for patients.


Can you provide an example of an important challenge that the Office of Clinical Trials has helped to resolve?

When I began this assignment as director of the Office of Clinical Trials, one of our first priorities was to reduce the amount of time required to activate clinical trials. At the time, the average time required to activate at trial was 220 days. We made it our goal to shorten this time frame.

Thanks to the remarkable collaboration of the various Mayo business units involved, we’ve shaved that 220 day activation time down to just 65 days. Four years and nearly 700 clinical trials later, this process has saved Mayo Clinic over 300 years in valuable research time.


Adil Bharucha, M.B.B.S., M.D.

What’s next for the Office of Clinical Trials?

Here are four things that are top-of-mind for me:

  1. We need to make it easier to bring clinical trials to all patients who may benefit from them. This means finding better ways to identify and connect with potentially-eligible patients.
  2. We should continue to take advantage of technology to gather data more effectively and efficiently, and to use that data to inform our work. This could help us make important decisions, such as selecting which trials should be activated at Mayo Clinic.
  3. We need to shorten the amount of time between when a research protocol is first submitted and when a funding proposal is subsequently submitted. Anything we can do to remove “waiting time” from clinical trials processes will help in our mission to transform scientific discoveries into solutions for patients.
  4. I’d like to see us develop an integrated protocol management system for clinical trials. This would make it easier for study teams to navigate the process of conducting trials.

There is so much to do.  If the office can accomplish these goals, we’ll be able to provide better help to study teams and, through them, better help for the patients who need us.


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Wed, Mar 27 6:00am · 'Bridge building specialists' keep science moving forward

Discovery, translation, application spectrum

Accelerating the hand-off between discovery and translation

“Physicians and researchers often have new ideas for medical devices, drugs, biologics, or other products that they want to deliver to patients, but they don’t know how to bring those discoveries to life,” says Jeff Anderson, Ph.D., Mayo Clinic Office of Translation to Practice.  Taking the next steps in product development may require access to additional resources or know-how. That’s the critical moment where the Mayo Clinic Office of Translation to Practice can step in to help bridge the gap.

The Office of Translation to Practice recently shared what it has learned in its first three years—best practices, innovations, and early successes—in a paper published in Mayo Clinic Proceedings.


Jeff Anderson, Bharath Wootla and Nathan Wiederman pose in the Gonda Building lobby.

Jeff Anderson, Ph.D.: Patent agent and manager of OTP strategic alliances. Doctorate in physical chemistry. Bharath Wootla, Ph.D.: Specialty in biopharma product development. Doctorate in biochemistry. Nathan Wiedenman, Ph.D.: Specialty in medical device product development. Doctorate in mechanical engineering.

Connecting researchers to the help they didn’t know they needed

The Office of Translation to Practice specializes in helping Mayo researchers assemble the best possible scientific teams to facilitate product development.

Office staff members are “bridge building specialists”—with expertise in business, law, sales and other areas—that makes them uniquely suited to help researchers find resources and assemble the teams that will help them move effectively between medicine and the marketplace.

 

 

 

 

 


Scienist peering closely at beakers, wearing gown, mask, gloves, goggles.

Sanford Burnham Prebys offers Mayo researchers access to sophisticated drug screening capabilities, vast drug libraries, and medical chemistry expertise.

A vetted portfolio of strategic collaborators

The Office of Translation to Practice has established a variety of strategic alliances with organizations outside the walls of Mayo Clinic, providing access to specialized resources and expertise.

The first of these strategic collaborations was a drug development research agreement established with Sanford Burnham Prebys (SBP) Medical Discovery Institute in 2012. Together, SBP and Mayo scientists have applied for and received numerous grants, resulting in a nearly six-fold return on investment.

 


Qrativ logo

Guidance from Translation Boards has already led to the product development success, including the formation of startup companies. One such company is Qrativ, a collaboration between Mayo Clinic and an analytics company called ‘nference’ that focuses on identifying the best clinical indications for new drugs.

Cross-functional translational advisory boards

Product development sometimes fails due to inadequate safety or toxicity assessment, incorrect patient populations selected for study, inappropriate study endpoints, and flaws in the design and implementation of clinical trials.

To help researchers avoid these pitfalls, Office of Translation to Practice offers researchers the opportunity to receive feedback and guidance from Translation Boards composed of physicians and scientists from a wide variety of specialties. In addition, the Boards are able to easily pull in additional experts from inside or outside Mayo Clinic, as needed.


Barry Borlaug poses wearing a white coat and a stethescope.

A standout example of the support offered by project-specific management teams is seen in the work of Barry Borlaug, M.D., a Mayo Clinic cardiologist. With the help of specialists identified by the Office of Translation to Practice, Dr. Borlaug prototyped and tested new tools and procedures to treat a previously-untreatable type of heart failure. Dr. Borlaug’s research and product development is ongoing, but these activities have significantly de-risked the product.

Project-specific management teams

As products move along the developmental pathway, the needs of research teams evolve.  At different points along the journey, a research team may need access to experts in specific areas,  such as regulatory affairs, reimbursement strategy, or business intelligence.

When these needs arise, the Office of Translation to Practice stands ready to supply the expertise, drawn from inside and outside Mayo Clinic.

In addition, the Office of Translation to Practice provides project management advice to help teams reach milestone goals.

 

 

 

 

 

 


Mayo Clinic Ventures team at a ribbon cutting ceremony

“No success of the Office of Translation to Practice would be possible without the strong partnership that exists between the Office and Mayo Clinic Ventures.”
– Jeff Anderson, Ph.D., Office of Translation to Practice

Working hand-in-hand with Mayo’s technology transfer office

The Office of Translation to Practice partners with Mayo Clinic Ventures on a continual basis as discoveries are translated into treatments with commercial potential.

Mayo Clinic Ventures provides legal and commercial expertise, negotiating and managing all contracts and agreements.  The Office of Translation to Practice focuses on scientific strategy, creation and management of partnerships, and project execution.

 

 

 

 

 


”Discovery, product development, and the dissemination of knowledge and tools are deeply rooted in the ethos of Mayo Clinic, beginning with Drs. Charles and William Mayo. In today’s more complex scientific and regulatory environment, those tasks have become increasingly difficult. OTP’s mission is to simplify and provide navigation support for Mayo investigators that enables product development for the benefit of our patients.”
– Andrew Badley, M.D., director of the Office of Translational to Practice

Looking to the future

As the Office of Translation to Practice enters its third year of existence, more and more Mayo Clinic researchers are reaching out, eager for specialized assistance to translate their discoveries into products that will meet the unmet needs of patients

 

Learn more and connect 

 

 

 

 

 


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Tue, Mar 19 6:00am · Reaching the next generation of healers and researchers through an enhanced digital presence

Mayo Clinic College of Medicine and Science recently launched a redesigned website for prospective students and trainees. This was the most significant work ever completed for the college’s public presence.

“Our goal is to attract the most talented and diverse learners, both regionally and nationally. Our website is our first chance — and sometimes our only chance — to make a strong impression as they explore and compare programs,” says Fredric Meyer, M.D., Waugh Executive Dean for Education.

Designers put themselves in the students’ shoes

The project team built the site from the ground up based on extensive user research about what prospective students expect when visiting a college or university website.

By putting themselves in the shoes of program applicants, the project team designed the new website to focus on key tasks and to answer common questions:

  1. Academics – What programs do you offer?
  2. Admissions – How do I apply? Can I get in?
  3. Tuition and aid – How much will it cost?
  4. Culture and experience – What is campus and community life like?

“The user experience and overall simplicity were big points of emphasis for us,” says Matthew Sluzinski, director of the Education Web Strategy and Services team and project sponsor. Even though Mayo’s college is complex—with five schools, 400 programs and three unique campuses—the website doesn’t have to be.

Telling the college’s story through content and design

The project team also focused on creating a welcoming and engaging experience for prospective students. The new site is “visual first,” featuring hundreds of images and videos that highlight the role students can play in patient care and research. In addition, the website highlights the learner experience by incorporating program outcomes and testimonials, including a warm and welcoming message from the college dean, Dr. Meyer.

“Our goal was to tell a compelling story,” says Amy White, a digital content specialist on the project team. “To allow users to better identify with the program. To help them imagine themselves on campus, in our community, as part of a future story.”

“We also wanted to promote health care career exploration and discovery,” says Matthew. “Prospective students are often familiar with doctors and nurses, but may not be aware of the vast array of other rewarding roles in patient care and research.” The new website includes a career library where students can browse options for applying their passion for healing or research, and can find out how to apply to Mayo Clinic programs in those fields.

“With this new website,” says Dr. Meyer, “we really capture the energy and uniqueness of the Mayo educational experience and our campuses, while making it easier to discover everything we have to offer.”


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Wed, Mar 6 6:00am · Online training demystifies research and catalyzes productivity

Mayo Clinic has a deep well of potential research talent. At last count, Mayo Clinic employed more than 3,800 full-time research personnel, including 234 full-time science faculty and 740 physicians actively involved in research.  These numbers barely scratch the surface when it comes to the depth and breadth of Mayo Clinic’s research pool.

In addition, Mayo Clinic employs more than 65,000 staff, including a wide variety of clinical and allied health staff and Mayo Clinic’s College of Medicine and Science has more than 4,000 active students and trainees

“With the right training,” says David Warner, M.D., director of education programs for the Mayo Clinic Center for Clinical and Translational Science (CCaTS), “any staff member or student has the potential to contribute to Mayo Clinic’s research mission. The more people we have engaged in research and the more diverse their backgrounds and experiences, the better when it comes to helping our patients.”

Self-paced, self-directed research training

Fundamentals of Clinical and Translational Science (FunCaTS):
Provides an overview of the fundamental components of clinical and translational science, such as developing good research questions, study design, writing research proposals, and understanding biostatistics.

Essentials of Clinical and Translational Science (ECaTS):
Builds on the content from FunCaTS, providing foundational knowledge of biostatistics and epidemiology research methodology, enabling participants to critically review medical literature and move their research forward..

How does Mayo Clinic hone and develop its own talent?

CCaTS currently offers two online courses designed to provide the training needed to take the first steps in research: Fundamentals of Clinical and Translational Science (FunCaTS) and Essentials of Clinical and Translational Science (ECaTS).

Leveling the playing field

Bridging this sort of gap in training is what Mayo’s FunCaTS and ECaTS courses are designed to do. People come to research with a variety of experiences and education, and often without any formal training in research. These courses provide a chance to level the playing field, giving participants a foundation that will enable them to succeed.

The Mayo Clinic Department of Internal Medicine requires all residents to complete FunCaTS prior to beginning any research rotation. “We want to make sure we are providing a solid foundation for all of our residents, regardless of background, so they can be successful in their future research activities,” says Amy Oxentenko, M.D., director of the internal medicine residency program.

Garrett Schramm, R.Ph., is also a firm believer in providing research training for staff. He is director of pharmacy education at Mayo Clinic and his department requires ECaTS for all new pharmacy residents.  In addition, the courses are highly encouraged for all pharmacy clinical staff.  “I think some people can get intimidated by the idea of research,” he says. “They may feel uncertain of their knowledge and abilities, or may have had previous negative experiences. Research training helps set the stage and demystifies the process.”

“I did not have this sort of resource available at other places I’ve worked and studied,” says Meghana Halkar, M.B.B.S., a resident in cardiovascular medicine at Mayo Clinic. “I struggled with research methodology and with finding systematic approaches to search the medical literature.” After coming to Mayo Clinic, Dr. Halkar sought out the ECaTS online course in order to gain a firmer knowledge of research.

2018 pharmacy residents

Gabrielle Anderson, Pharm.D., R.Ph., is a second year emergency medicine pharmacy resident. She says the research training she has received has paid off. The knowledge she gained helps in her day-to-day clinical activities as she works alongside other health care providers in the Emergency Department. “It’s important to know how to evaluate the literature critically, to understand study design and statistics so you can apply it to practice and provide evidence-based care,” she says.

Training good for the whole team

The ability to critically read and interpret scientific literature is a vital skill for everyone in health care and medical research.

Kara Mangold is a nursing education specialist at Mayo Clinic in Arizona who recently completed ECaTS as part of the Education Science Career Development Award program.  She says learning to read research is an important learning need in nursing. “I’ve worked with some nurses who say that they just read the introduction and the discussion and hope the researchers did okay with the stats, “ she says. “I want to find ways we can grow as nurses so we know that what we’re reading is actually based on good science.” Nurses are recognized nationally as the most trusted profession, she says. “We have a lot to contribute to the team.”

Lee Skrupky, Pharm.D., R.Ph., a pharmacy education manager at Mayo Clinic in Rochester, Minnesota, agrees. “Everyone on the team having a comparable level of knowledge and shared terminology helps improve our communication and improves efficiency. If I’m handing off a data set to a statistician and I have a better understanding of statistics, I probably created my database in a smarter way from the very beginning.”

Career development resources that catalyze productivity

Garrett Schramm, R.Ph.

“Research is one of the three shields at Mayo Clinic and research activity is a great way to stand out—for individual staff and for departments,” says Dr. Schramm.  He says research has opened many doors for his staff, over the years. “There’s always somebody who is looking to be a trailblazer. ECaTS is a tool that can help those people achieve career goals or pursue a passion.”

Encouraging staff to pursue their passions can be good for the department as whole. The pharmacy department began offering a research training program 10 years ago, and ever since then, says Dr. Schramm, the department’s research productivity has skyrocketed.

“We have pharmacists,” Dr. Schramm says, “who, before the program, had never done research. And now they’re 30 or 40 publications into their research careers and they’re getting grants and all sorts of recognition for their work. Our residents’ research publication rate is 75%. And that’s in high-profile journals. I have yet to find another residency program with anything like that level of success.”

“We have to put effort and resources into training our staff,” says Dr. Schramm, but that effort pays huge dividends. The pharmacy department hires approximately half of its residents, and all of those individuals are equipped to go on to become productive research team members or independent researchers.  “It’s an investment in the future,” he says. “Get these people trained and they could be making research a part of their daily activity for the next 30 years. It’s hard to put a price on that.”

Heidi Felix, right

Heidi Felix, an education specialist at the simulation center at Mayo Clinic in Florida, agrees that staff research training is a good investment. “They’ve started encouraging fellows at the simulation center to take FunCaTS,” she says. “I would consider encouraging ECaTS as well. If you’re on a certain career trajectory, it just makes sense.”

Spreading the word outside Mayo Clinic

While FunCaTS and ECaTS are primarily used by staff and students at Mayo Clinic, the courses are also available to the public.  Dr. Schramm often talks to colleagues at other institutions about the research training programs. “There’s so much opportunity for a program like this,” he says. “I tell my peers outside Mayo Clinic about our program and all the resources we’re afforded. I don’t think we realize how fortunate we are at Mayo Clinic to have programs like FunCaTS and ECaTS, and all the other support for research here.”

“There are people everywhere, inside and outside Mayo Clinic, who are genuinely interested in engaging in research at a level greater than they do now,” says Nathan Staff, M.D., Ph.D., associate director of CCaTS online programs. “FunCaTS and ECaTS are directed at those individuals, who maybe have a bit of knowledge and a bit of curiosity, who just need a little push.”


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Wed, Feb 13 6:00am · Coping with the "work of being a patient"

There’s no getting around it: being a patient is hard work. And it gets even harder for patients living with multiple chronic conditions.

This “work” is made of up all the responsibilities and tasks doctors ask patients to take on in order to access and use health care and in order to successfully carry out self-care. “The burden of this labor can be overwhelming for some patients, which can directly affect their health, outcomes, and overall quality of life,” says Kasey Boehmer, Ph.D., a health services researcher at Mayo Clinic.

Mayo Clinic Public Affairs recently sat down with Dr. Boehmer to talk to her about the work of being a patient and some of her most recent research on a new concept called “capacity coaching,” including a paper recently published in Mayo Clinic Proceedings.

What is the work of being a patient?

The work of being a patient is made up of a lot of little things. There are the tasks themselves, such as taking medications, making appointments, and implementing dietary change. But beyond that, there’s also the mental, physical and emotional labor required to make sense of the tasks that have been assigned.  Some of these can include:

  • Figuring out how “being a patient” fits into an individual’s self-identity. The patient may need to adjust their concept of themselves to include their disease, which can be a mental and emotional challenge. For example, “I am an immigrant to the United States living with diabetes” or “I am a new mom living with depression.”
  • Planning how to accomplish the tasks. This can require complex organization and logistics, and the tasks may need to be performed daily or even multiple times per day.
  • Finding the resources, such as money or transportation, necessary to complete the tasks.
  • Enlisting social support and help from friends and family.
  • Taking time to reflect on success (or lack of success) in carrying out the tasks. Every day the patient has to decide whether they feel capable to continue with the tasks the next day.

That’s a lot of work! And it can be very complex, especially for patients with multiple chronic conditions.

What is capacity coaching and how does it help with the work of being a patient?

Shared decision making involves educating patients so they can work with clinicians to make decisions about their care. Mayo Clinic researchers advocate for tools that promote a conversation during the visit (called conversation aids), and not simply provide information to the patients beforehand for them to make a decision themselves (referred to as patient decision aids).

Capacity coaching is a discipline designed to help patients adapt and thrive when living with chronic illness. The idea is to help the patient function optimally: managing their health while also living a meaningful life. 

Sometimes, patients can get overwhelmed with all the work they’re asked to do, which means their “capacity” to adapt and thrive is low. The coach will work with a patient to help reduce their burden, enhance their capacity, or both. This might involve adjusting a patient’s treatment schedule and medications so that the patient is better able to manage them. It might also involve helping a patient figure out how to enlist the help they need to carry out the work. What is needed will vary from patient to patient.

How is capacity coaching different from health and wellness coaching?

Health and wellness coaching tends to focus on achieving specific health or lifestyle goals, such as losing weight. And it tends to happen outside of overall patient care. Capacity coaching, on the other hand, is focused on helping patients learn how to adapt and thrive in general,  in the face of important changes to their health. And it is designed to be integrated with overall patient care. Ideally, it should be delivered by a member of the patient’s health care team, such as a doctor or nurse.

What inspired you to study capacity coaching?

I work with a research team in the Knowledge and Evaluation Research Unit at Mayo Clinic, where we’ve been developing a model of health care that helps patients find balance between workload and capacity. We have been collaborating with health and wellness coaches at the Mayo Clinic Dan Abraham Healthy Living Center to find new approaches to coaching that better meet the needs of patients with multiple chronic conditions. That’s where capacity coaching came from. We think capacity isn’t fixed, but is something that can be collaboratively managed by the patient and their care team. We think better capacity is something that can be taught.

What’s next in your research on capacity coaching?

We’ve recently been working on a capacity coaching pilot with two Veterans Administration medical centers and we expect to publish our result soon. After that, we plan to pursue some larger trials and to partner with other medical centers to learn how to best apply this practice in patient care.  We need to study the ways capacity coaching affects patient health outcomes and quality of life, as well as how it impacts the functioning of primary care teams.

What impact do you hope your research will have for patients and their health care teams?

I think it’s important to recognize that we ask a lot of our patients. We need to raise awareness of that and ask ourselves how we can provide better support. One day, I hope that capacity coaching will be part of the care every patient receives.

Learn more about capacity coaching

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Dec 27, 2018 · Be the life [science] of the party

Looking for a scientific conversation starter for New Year’s Eve? Advancing the Science has you covered with this top-10 recap of our hottest medical research stories from 2018.

With this list in your back pocket, you’ll never run out of interesting cocktail banter. And we guarantee you’ll wow your friends with your scientific smarts.

Human alimentary track#1  ‘Gut touch?’ Mayo Clinic researchers discover important trigger for serotonin release

Researchers at Mayo Clinic have discovered an important mechanical trigger in the gut for releasing serotonin in the body. Serotonin is an important hormone and neurotransmitter in the human body, believed to help regulate digestion, appetite, mood, social behavior, sleep and other important functions.

The researchers were amazed to find that certain cells in the gut has a specific trigger that is not present in the cells around them. They were also surprised to find how effective it was to block or eliminate this trigger to improve serotonin release.  Read more.

Mark Truty, M.D.

#2  A revolution in pancreatic cancer treatment

Mark Truty, M.D., had dedicated his career to giving patients with pancreatic cancer more quality time with their loved ones. His own father died from pancreatic cancer 20 years ago at age 58.

Not content with the status quo, Dr. Truty and his colleagues are looking for ways to improve outcomes. They’ve pioneered a multidisciplinary approach—which other medical centers are copying— that includes boosting patients’ health to endure treatment, providing neoadjuvant chemotherapy and radiation, and performing aggressive operations. Read more.

Normal liver and fatty liver

#3  The rising tide of nonalcoholic fatty liver disease

Liver disease isn’t just for alcoholics. Nonalcholic fatty liver diseases (NAFLD) can affect people who drink little or no alcohol. These diseases are a significant and growing public health issue. NAFLD contribute to development of other diseases, like diabetes and double risk of death.

Mayo Clinic researchers using data from the Rochester Epidemiology Project recently found that five times as many people have this type of liver disease now, compared to 20 years ago. They suspect this is related to the rise in rates of obesity.  Read more.

doctors examine results of clinical test for MS#4  MS or not MS? Mayo Clinic Nureoimmunology Lab answers the question

In 2017, Mayo Clinic launched a first-in-the-U.S. clinical test to help patients with some autoimmune disorders get the right diagnosis faster. The test defines a new form of inflammatory demyelinating disease, myelin oligodendrocyte glycoprotein (MOG) autoimmunity, which is distinct from multiple sclerosis (MS), with which it is commonly confused.

Having diagnostic-specific antibody tools allows Mayo Clinic researchers to develop tests to help physicians rule out MS and for patients to get correct diagnoses and treatments in the early stages of disease. Read more.

Rock formation#5  Can geology upend decades of medical wisdom about kidney stones?

There may soon be a new, non-surgical way to remove kidney stones, thanks to an unlikely collaboration between a geologist and a Mayo Clinic nephrologist.

By carefully examining kidney stones, they were able to show that kidney stones do not continuously grow (as previously thought). Instead, the minerals seem to dissolve and reform, similar to the stratification of stones and fossils in rock.

The race is on to identify the stone-dissolving process in the kidney so that scientists can develop a treatment. Read more.

 

Fetal endoscopic tracheal occlusion surgery#6 ‘Extraordinary Ability’ – Fetal surgery program elevates maternal-fetal medicine

Imagine being deemed so critical to a health care organization that the state legislature acts immediately to allow you to practice there. That’s how Rodrigo Ruano, M.D., Ph.D., came to Mayo Clinic in Rochester, Minnesota.

Dr. Ruano was recruited to Mayo Clinic to establish a center of excellence for fetal surgery. He specializes in procedures, such as fetal endoscopic tracheal occlusion, to correct severe congenital defects before birth.  At Mayo, Dr. Ruano is now leading the way in research as well as treatment in maternal and fetal medicine.  Read more.

Foods containing gluten#7  The quest to understand the gluten free diet and celiac disease

In recent years, reports in the media have linked gluten to all sorts of health issues ranging from feeling sluggish to the extremes of being linked to autism (debunked here). Some notable individuals have been eating a gluten-free diet without a clinical necessity – but is that the best course of action?

Mayo Clinic researchers recently published a study on the prevalence of gluten-free diets in children age 4-18 who do not have celiac disease. Imad Absah, M.D., a pediatric gastroenterologist, says the increase of gluten-free diet without clinical necessity is concerning as some of these uses may be masking symptoms of unrelated conditions.” Read more.

Diagnosing spinal cord stroke#8  First diagnostic criteria determined for spinal cord strokes

A spinal cord stroke occurs when the blood supply to the spinal cord stops and the cord can’t get oxygen and nutrients.  Mayo Clinic researchers recently published a seminal paper that will help doctors better diagnose spinal cord strokes which can be misdiagnosed as other types of spinal cord disease. Read more.

Sun shining in clear blue sky#9  Shedding light on the ‘sunshine vitamin’

Vitamin D, sometimes referred to as the ‘sunshine vitamin,’ may have a broader role in human health than we once thought.

Mayo Clinic researchers recently found a relationship between vitamin D deficiency and increased risk of death in Caucasian patients.  They did not observe this connection in non-Caucasian patients. Further research with diverse populations will be needed to determine if what constitutes “normal” or “deficient” vitamin D should vary based on race or ethnicity.  Read more.

Two people holding hands#10  Let’s talk about it: Death

Death. Dying. End of life care. Comfort care. These are emotionally loaded words. And that can make these topics hard to talk about between patient and caregiver. There is often a sense of guilt; a feeling that we are giving up on you or that you are giving up on us.

But that’s far from the truth. We say these words and talk about these feelings because we care. Here are six important questions about end of life that may be helpful to discuss.  Read more.


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Oct 10, 2018 · Mayo lab scientists collaborate to paint a better picture of patient health

On September 24, 2018, the National Institutes of Health  (NIH) awarded Mayo Clinic funding to serve as the new Metabolomics Research Core for the Undiagnosed Diseases Network. In this article, we explore the role of metabolomics in medicine at Mayo Clinic, both in research and in patient care. And we celebrate the role that Mayo Clinic plays as a leader in the science of metabolomics on a national and an international scale.

Metabolomics in medicine

Metabolomics—the study of tiny molecules in the human body left behind by diseases and other processes—was an emerging scientific field in the 1990s when Mayo Clinic began investing in this technology and opened its first dedicated metabolomics lab.  Today, Mayo Clinic is home to a Metabolomics Core Laboratory that serves the needs of researchers and clinicians at Mayo and around the world.

Metabolomics is primarily used in medical research at Mayo Clinic to help scientists better understand and detect the causes of disease, identify new disorders, and find treatments.  However, through collaboration with other labs and clinical areas at Mayo, the metabolomics lab is also finding ways to contribute directly to patient care.

The Mayo Clinic Clinical Biochemical Genetics Laboratory and the Department of Clinical Genomics consult with scientists in the metabolomics lab to help find solutions for patients with rare diseases. By working together these disciplines can paint a more complete picture of a patient’s health, which can lead to more precise diagnoses and better treatments. “It’s a beautiful partnership between research and the clinic,” says Ian Lanza, Ph.D., director of the Metabolomics Core Laboratory. “We will do more good for patients and learn more through collaboration than we could ever do alone.”

Resources for medical detectives everywhere

Ian Lanza, Ph.D., director of the Mayo Clinic Metabolomics Core Laboratory

Demand for metabolomics analysis is growing along with the flourishing field of individualized medicine.  However, metabolomics is still a niche specialty and many scientists and clinicians outside Mayo Clinic look to Mayo for support and leadership. “Not everyone has the specialized equipment or the expertise to do what we do,” says Dr. Lanza.

One way Mayo meets those needs is through commercial clinical laboratory services, such as those offered through Mayo Medical Laboratories. Mayo Clinic is able to offer specialized services that draw on the combined knowledge of the metabolomics lab, the biochemical genetics lab, and the Department of Clinical Genetics to help clinicians and researchers around the world find solutions for patients with rare diseases.

On a larger scale, Mayo Clinic contributes to the field of metabolomics by serving as a research core for large metabolomics-related studies funded by the National Institutes of Health (NIH). “Mayo has shown real leadership in this field for decades and I think the NIH recognizes that,” says Devin Oglesbee, Ph.D., co-director of the Mayo Clinic Biochemical Genetics Laboratory. In 2013, the NIH awarded Mayo funding to serve as one of six Regional Comprehensive Metabolomics Resource Cores. In this role, Mayo provides instrumentation, support and training for investigators throughout the United States.

A new research core for the Undiagnosed Diseases Network

Devin Oglesbee, Ph.D., co-director of the Mayo Clinic Biochemical Genetics Laboratory

Last month, the NIH further recognized Mayo Clinic’s expertise and leadership in metabolomics by awarding Mayo funding to serve as the new Metabolomics Research Core for the Undiagnosed Diseases Network.  The Undiagnosed Diseases Network is an NIH-funded study that brings together clinicians and scientists from many institutions and many countries to find solutions to medical mysteries. In this new role, Mayo’s metabolomics lab, clinical biochemical genetics lab, and the Department of Clinical Genomics will all work together to provide tools and support for the Undiagnosed Disease Network’s 12 Clinical Sites.

“We’re very pleased to begin this exciting new phase with the Network,” says Dr. Oglesbee. “As an institution, we’ve made progress in rare disease discovery for a long time, and in this new role, we look forward to contributing even more to this important work.”

Dr. Lanza agrees, adding that Mayo’s contributions to the work of the Network, and to the field of metabolomics, go well beyond analytical chemistry. “We will be able to provide meaningful clinical insights from the metabolite signatures measured in patients. That’s a significant step forward because metabolomics has been slow to reach the clinic. It’s the ability to make those insights that truly advances the science and enables us to help patients with unmet needs.”

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