Boosting the Voice of the Patient in the Medical Decision Making Process

banner-healthdecisionsciencesIn medicine, many diagnostic questions can be answered in yes or no, black and white terms. Is the pain in your back and legs due to a herniated disc? Is your cholesterol too high?

When it comes to determining the best treatment plan for each patient, however, there are many more shades of gray.

For a herniated disc, is the best course of action to fix the disc via surgery, which could provide quicker relief but may cause a serious complication? Or is it better to manage the pain through physical therapy, which is less invasive than surgery, but may not solve the problem?

If you have high cholesterol, should you take statin drugs, which are effective but can cause side effects such as pain and muscle fatigue? Or to try improving your diet and exercising more, which is often easier said than done?

“In medicine, there are tradeoffs everywhere you look,” says Karen Sepucha, PhD, Director of the Health Decisions Sciences Center (HDSC) at Massachusetts General Hospital. “We can’t know what’s best for someone unless we know who that person is, what’s important to them, and how they might view the tradeoffs. Patients may make different decisions than their provider would when faced with the same situation.”

To acknowledge these tradeoffs and prompt more productive discussions between patients and their providers, the HDSC team has created a series of print, online and video-based decision aids for patients with conditions such as herniated discs, high blood pressure, depression, diabetes, breast cancer, prostate cancer, anxiety and more.

The goal of this approach, called Shared Decision Making, is to present the patient with an objective view of all treatment options, and discuss the pros and cons of each.

“It’s like being able to consult the best doctors and hear from a range of ‘experienced’ individuals who have chosen different approaches. You can learn what the different treatments are like and why folks might make different decisions based on what is most important to them,” Sepucha explains.

The HDSC team also works with clinicians and health care providers to assist them with implementing decision-making tools in their practices. According to Leigh Simmons, MD, an internal medicine physician at Mass General and member of the HDSC team, the process is not always easy.

Simmons explains that many clinicians who already feel strapped for time in their daily practice worry that their patient visits will become longer if they have to address all of the questions that a decision aid can raise.

In practice, however, patient visits tend to stay the same length when a decision aid is distributed beforehand, Simmons says. “It’s the nature of the conversation that changes.”

Clinicians find that they don’t have to spend as much time going through the basics of the medical problem or treatment plan, and can talk more about the pros and cons of each option to see what will work best for each patient. “We usually advise that using a decision aid may not necessarily save time, but it makes for a better conversation with their patients, which everyone likes more, Simmons says. “The questions that get asked are more advanced, and the visit is more productive.”

Another barrier that physicians have to confront is that when you give your patients high-quality information about reasonable treatment options, they may choose something you would not have chosen for them, Simmons says. “That is something we have to be aware of and be honest with ourselves as doctors, and we recognize that sometimes our patients know best about what is right for them.”

From a research standpoint, the HDSC team is working on strategies to determine if decision-making aids are increasing patient involvement and improving treatment outcomes, Sepucha says. “Are patients more informed, are they more engaged in the decision-making process and are clinicians doing a good job of matching the right patient to the right treatment?”

How we make decisions with our patients is important, and some of our research has shown that our patients who are well-informed and received their preferred treatment have better outcomes.”

For more information about the Health Decisions Sciences Program, please visit www.massgeneral.org/decisionsciences.

Biobank Reveals Novel Research Kiosks

At the Partners HealthCare Biobank, everyone has the ability to help shape the future of healthcare. The Biobank is a research initiative that brings patients, clinicians, and investigators together to make research discoveries that improve care for generations to come. Patients are asked to provide consent, a blood sample, and take a health survey. These contributions are used in cutting edge research projects on a variety of health conditions.

On April 28th the Biobank unveiled two interactive research kiosks located in the Wang and Yawkey 2 lobbies. The main objective of the kiosks is to raise awareness of the project throughout Mass General. The kiosks are a novel tool to help build a partnership between patients and researchers. They are also one of many initiatives implemented by the Biobank to make involvement in medical research more accessible to patients. Our community’s engagement with the Biobank is crucial because the more people who join, the more power researchers have to make discoveries that impact our health.

Patients are invited to help the Biobank with this progression of innovative research by learning more online at www.partners.org/biobank. At the Biobank, discovery starts with you.

Research Awards and Honors: June 2017

Massachusetts General Hospital’s talented and dedicated researchers are working to push the boundaries of science and medicine every day. In this series we highlight a few individuals who have recently received awards or honors for their achievements:

PulliBenjamin Pulli, MD, Department of Radiology resident, has been awarded a Research Resident Grant from the Radiological Society of North America for his research, Multimodal Molecular Imaging Profiling of Thrombus in Acute Ischemic Stroke. Pulli’s faculty mentor is John W. Chen, MD, director of Imaging Clinical Trials in the Division of Neuroradiology, and he will be co-mentored by Peter Caravan, PhD, of the Martinos Center for Biomedical Imaging, and Aman Patel, MD, director of Cerebrovascular and Endovascular Neurosurgery.

“Receiving this research grant from the RSNA is an extraordinary opportunity to continue research in molecular imaging techniques I have been a part of for the last several years. With scientific advisor John W. Chen, M.D., Ph.D. (Division of Neuroradiology and Center for Systems Biology), and co-advisors Aman Patel, M.D. (Dept. of Neurosurgery) and Peter Caravan, Ph.D (Martinos Center), I will investigate thrombus composition in a mouse model of acute ischemic stroke with molecular imaging agents targeted at key clot components. Results from these pre-clinical animal studies will be confirmed by testing samples obtained from stroke patients, and correlated with clinical information to generate specific imaging signatures and establish imaging predictors for clot retrieval success. I hope that these experiments will lay the foundation towards personalized medicine in stroke treatment by using clot-imaging characteristics to optimize patient selection to different therapeutic approaches.”

SucciMarc Succi, MD, second year Radiology resident, has received an Innovator Award for his recent device inventions in the field of medicine. The award was given at the inaugural Partners Innovation Award night.

“My research is primarily in low-cost medical devices, medical entrepreneurship and patent innovation. One particular device I am developing is a low-cost, reusable, bedside nasogastric and feeding tube detector to replace x-ray confirmation of these tubes, thereby reducing radiation dose and saving significant associated personnel and technical costs. Other devices I am co-investigating include modified introducer needles for faster vascular access in vascular interventional radiology; a device for safe opioid medication dispensing to reduce addiction; modified surgical bougies for expedited bariatric surgery procedures and intestinal stem-cell based re-growth methods for inflammatory bowel disease sufferers.

I was thrilled and honored to be recognized with the Partners Innovation Award, and I think the recognition and associated conference helps foster a productive community of innovators in an already academically charged community. I hope to continue to contribute to this elite community as it grows and makes significant advances in healthcare.”

More Than Meets the Eye: Researchers Find Eye Contact Causes Stress and Overactivation in the Brains of Autistic Individuals

They say that eyes are the windows to the soul, but for individuals with autism, a lack of eye contact can reveal much more. A team of investigators based at the Athinoula A. Martinos Center for Biomedical Imaging at Massachusetts General Hospital has shed light on why those with autism often avoid looking others in the eyes.

Here are five things to know about the study published in Nature Scientific Reports this month:

  1. Individuals with autism often find it difficult to look others in the eyes. Many say that maintaining eye contact is uncomfortable or stressful for them – some will even say that “it burns” – which suggests the root of this discomfort is neurological.
  2. Previous work by Nouchine Hadjikhani, MD, PhD, Director of Neurolimbic Research in the Martinos Center and corresponding author of the new study, demonstrated that the subcortical system, the part of the brain activated by eye contact and responsible for processing emotions and facial recognition, was oversensitive to direct gaze and emotional expression in autistic individuals.
  3. In her most recent study, Hadjikhani presented images of faces conveying different emotions to study subjects with and without autism and measured their brain activity via functional magnetic resonance imaging (fMRI). When both groups were able to gaze at the images freely, there was no difference in subcortical activation.
  4. When the test was changed to narrow the focus to the eyes, Hadjikhani observed overactivation of the subcortical system in participants with autism. Images of fearful faces prompted the most significant response, but happy, angry and neutral faces had an effect as well. Their results support the idea that there is an imbalance between the brain’s “excitatory” network, which reacts to stimulation, and inhibitory network, which calms it down.
  5. The findings suggest that behavioral therapies that try to force individuals with autism to make eye contact could be counterproductive. A better approach may be to slowly introduce these individuals to eye contact so they can learn strategies for managing the accompanying sensations.

 

Autism and eye contact

For Alzheimer’s Patients, Every Day is the Longest Day

46563418 - science image with human brain on gray background

June 21st is not only the longest day of the calendar year, but it is also a special day focused on Alzheimer’s disease (AD), an irreversible progressive form of dementia that slowly destroys memory and thinking skills.

The challenges of living with AD make each day the “longest” in terms of sheer survival. The Longest Day is meant to pay tribute to those suffering from AD and their loved ones and caregivers; to raise awareness of the challenges that come with a diagnosis of AD; and to raise funds for continued AD research.

Today an estimated 5 million Americans have AD. With that figure expected to quadruple in the next 30 years, there’s a growing need to find a way to prevent or stop progression of this devastating disease.

Massachusetts General Hospital researchers are hard at work trying to learn more about the disease. Here are a few examples of their recent discoveries:

  • Abnormal accumulation of tau and amyloid beta proteins in the human brain are two characteristics of AD. In a recent study using advanced imaging techniques, lead author Jorge Sepulcre, MD, PHD, of the Gordon Center for Medical Imaging, looked at the distribution of tau and amyloid beta deposits in the brains of elderly, cognitively normal individuals. Read how the clues his team found about the spreading pathways of AD could help researchers one day identify a specific target to try and stop the disease’s progression.
  • Could the development of amyloid beta plaques in the brain be a response to infection? Mass General researchers Rudy Tanzi and Robert Moir are investigating amyloid beta’s role in the body. Their findings could possibly open new fronts for treating or preventing AD by attacking infection before plaques begin to form.
  • New research from the Mass General Epilepsy Service suggests a potential connection between the devastating memory loss associated with AD and “silent” seizures in the memory center of the brain. Learn how this discovery could lead to potential new treatment options for patients with AD.
  • If you are wondering about your risk of developing AD, the answer may be found right under your nose. A team from the Center for Alzheimer’s Research has developed a series of four tests designed to measure early indications of AD based on an individual’s ability to recognize, remember and distinguish among odors. Learn more about the tests.

Meet Our Summer Communication Interns!

This summer the Mass General Research Institute is thrilled to continue our summer internship program for the second year in a row. Please join us in welcoming Catherine Iannucci and Shika Lakshman, both undergrads at Emerson College.  Be sure to check back here for weekly updates on what they’re working on!

Name: Catherine Iannucci

Cat
Where do you attend school and what’s your major, and year? I go to Emerson College, I am a senior Journalism major and a Marketing Communications minor.

Where are you from? America’s Hometown, Plymouth Massachusetts.

Why are you interning at the Mass General Research Institute? This internship opportunity married my two passions, writing and marketing, perfectly. Here I will have the opportunity to do internal and external marketing while learning, and writing, about the groundbreaking health research being done at Mass General.

What do you hope to gain or learn while interning here? I want to expand professionally, by honing my writing and marketing techniques but I also hope to expand my understanding of medical issues and research happening right beyond my office doors.

Why are you interested in health communications? Health communication is extremely important, it allows people with no health or medical background  to be informed on the advancements going on in the medical world that could affect them or a loved one.

What are your goals for the future/career goals? I would love to go into non-profit Public Relations, in my opinion, the general lack of funding funneled into non-profit marketing and PR prevents people that need help from even being aware of the resources available to them.

What do you like to do when you’re not being an intern? I love being outside, everything from camping to sunbathing on a beach. Especially this time of year, I live on sunlight and swimming.

Favorite food? My favorite food is homemade pasta, no contest.

Name: Shika Lakshman

Shika
Where do you attend school and what’s your major, and year? I’m a senior Marketing Communications student at Emerson College.

Where are you from? I currently live in Jamaica Plain, but my family is from New Jersey.

Why are you interning at the Mass General Research Institute? I’m hoping to make the research being done at MGH accessible to the public. People should know about the discoveries made everyday, in a way they understand, even without a medical degree.

What do you hope to gain or learn while interning here? I’d like to strengthen my writing skills; health communications is a new field for me, and it would be great to have experience in different fields. Most of the time you can catch me on Twitter, so writing longer form pieces will be interesting.

Why are you interested in health communications? When I was 10 years old, I decided I was going to medical school, and up until my junior year of high school, that was still the plan. I switched career plans, and although I’m not in a medical field, my love of science is still a big part of my life.

What are your goals for the future/career goals? I’m planning on opening my own restaurant one day, but until then, I plan on working with nonprofits.

What do you like to do when you’re not being an intern? I’m a bit of a foodie, so either cooking or trying somewhere new to eat. If I’m not eating, then I’m probably playing with dogs in the Common or binge watching The West Wing for the umpteenth time.

Favorite food? My favorite food is probably macaroni and cheese. Despite my motto of “try anything once”, nothing tastes quite as good as a big bowl of mac and cheese!

Men’s Health at MGH: Advancements in Clinical Care and Research

“Starting as early as childhood, young men have had the notion ingrained into their minds that their manhood is more important than their overall health,” says Dicken Ko, MD, Director of Massachusetts General Hospital’s regional urology program and past director of the kidney transplant program.

Ko says that men’s health in general is an often underreported and underrepresented topic, in part due to the uncomfortable nature associated with talking about subjects such as sexual dysfunction and mental health issues.

Here are just a few ways that researchers and clinicians at Massachusetts General Hospital are helping to raise awareness of and advance the field of men’s health:

Transplant

Dr. Ko was also the urologist who led the first U.S. penis transplant along with plastic surgeon Curtis Cetrulo, MD, FACS, Director of MGH’s Vascularized Composite Allotransplantation Laboratory. Read about this surgical milestone and how it’s opening a frontier for complex transplants.

 

Fertility

Male infertility affects almost half of the 45 million couples worldwide who have trouble conceiving, but current standard methods for diagnosing male infertility can be expensive, labor-intensive and require testing in a clinical setting. Researchers at Massachusetts General Hospital and Brigham and Women’s Hospital have developed a smartphone-based semen analyzer that can be used to test for male infertility in the privacy of your own home. Learn more about the device.

 

Steroids

3 to 4 million men in America have used steroids at some point. Recent findings from Aaron Baggish, MD, Associate Director of the Massachusetts General Hospital (MGH) Cardiovascular Performance Program, show long-term use of illicit steroids can reduce the heart’s ability to pump blood throughout the body, damage the heart muscle’s ability to relax and may also cause a buildup of plaque that can lead to heart attacks. Read more about this study here.

 

Homebase project

The majority of veterans are men (as of September 2016, the VA estimates that there are 18,532,000 living male veterans and 1,861,000 female veterans). Home Base, a partnership of Mass General and the Red Sox Foundation, is the only private sector clinic in New England, and the largest private sector clinic in America, with the sole focus of helping at-risk veterans and military families. Learn more about Home Base. (photo courtesy of Home Base)

The Fatherhood Project Works to Engage New Dads

Fatherhood project
Photos courtesy of the Fatherhood Project

Ask an expecting dad what resources he needs to become a parent, and he may tell you he wants information on how to contribute to his partner’s healthy pregnancy, or for a list of practical parenting skills. He also might tell you it would be nice to have a bar to order drinks from in the waiting room at the hospital.

This is the type of honest insight that the team at the Fatherhood Project has gathered in an effort to better support fathers as they enter parenthood.

The Fatherhood Project, a nonprofit program in the Department of Psychiatry at Massachusetts General Hospital, has been working to improve the health and well-being of children and families since its creation in 2010.

The program aims to assist fathers, as well as medical and social service practitioners who work alongside families, by hosting workshops and trainings, serving as a hub for vital parenting resources, and conducting research to hone their programming. In equipping fathers with crucial parenting skills, the Fatherhood Project empowers them to be knowledgeable, active and emotionally engaged with their children.

The Fatherhood Project’s programming addresses a multitude of issues commonly faced by parents, including father readiness, teen pregnancy, single parenthood, divorce and addiction recovery. Their programs are intended for all fathers with a focus on underserved, at-risk populations. To help reach these dads, they have collaborated with groups such as the MGH Revere Department of Pediatrics and the MGH Departments of Obstetrics and Pediatrics.

They recently administered a survey to men who attended prenatal classes with their partners to see how to better support them. In addition to the tongue-in-cheek suggestion of adding a bar to the waiting room, respondents said they would benefit from additional information regarding how to understand their infant’s emotions and needs.

The survey found that men are excited about becoming fathers, but 56% agreed that fatherhood is stressful. The majority of men were interested in the impact pregnancy and parenting has on their health and recognize that their current health is important for the health of their infant. However, a third of them had not had a physical within the past year, and 50% percent were overweight and 17% obese.

In the future, the Fatherhood Project plans on creating programs and interventions that are designed to engage fathers and encourage a healthy lifestyle for both parents and children. Their overarching goal, however, remains simple: to increase paternal involvement in early childhood.

Take part here: http://www.thefatherhoodproject.org/

Raising Awareness of Belly Fat and Its Impact on Men’s Health

Body-Type-BannerDid you know that in addition to June being Men’s Health Month in the United States, this week (June 12th-18th) is Men’s Health Week in the UK? The focus this year is on belly fat which tends to be more prevalent in men than women.

Regardless of a person’s overall weight, belly fat—also called abdominal adiposity— can increase the risk for developing a number of health issues including colorectal cancer, stroke and sleep apnea.

A recent study by researchers at Massachusetts General Hospital also found that individuals who have a genetic disposition for belly fat were at a higher risk of developing both diabetes and heart disease when compared to individuals who store fat primarily in their hips and thighs.

While genetics are a big factor in where fat gets stored, proper diet and exercise can help lessen the risk.

 

Stay tuned for more posts about men’s health all this week leading up to Father’s Day.

Alan Alda’s New Book Highlights Need for Scientists to Use Effective Communication to Reach Their Audiences

The Mass General Research Institute believes in the important role communication plays in a researcher’s ability to connect with a wide audience. As part of our commitment to help our researchers better communicate their science, we have previously worked with the Alan Alda Center For Communicating Science to teach Mass General researchers how to distill their message.

Now the man who helped establish the center has published a new book on the topic. Alan Alda’s book, If I Understood You, Would I Have This Look on My Face?, talks about communication and miscommunication between scientists and civilians, explains why empathy is crucial to successful science conversations, and describes Alda’s work at the center.

“When patients can’t relate to their doctors and don’t follow their orders, when engineers can’t convince a town that the dam could break, when a parent can’t win the trust of a child to warn her off a lethal drug. They can all be headed for a serious ending,” says Alda.

You can learn more about the book in this great article from NPR.

Other articles about science communication: