Connected Health Symposium 2016 Disruptive Women in Health Care Panel – Boston Strong


Just as trailblazer Kathrine Switzer, the first female Boston Marathon runner, made history in 1967, transforming the “men’s only” Boston Marathon into what it is today, our panelists are changing the world of health care. Meet the Disruptive Women who are transforming health care in and around Boston.


Robin Strongin

Ami Bhatt, MD, FACC

Glenna Crooks, PhD

Naomi Fried, PhD

Lisa Gualtieri, PhD, ScM

Kathy McGroddy Goetz, PhD

Mandira Singh




Thursday, October 20, 2016 – 09:00 to 09:50am

FireShot Capture 37 - Panel_ Disruptive Women in Health Care_ - https___symposium.connectedhealth.


2016 Connected Health Symposium


Morning Events

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Creative Power | A Joint Program between The Kreeger Museum and Disruptive Women in Health Care

Creative Power

Panel discussion:
Creative Power                

A Joint Program between The Kreeger Museum and Disruptive Women in Health Care

Wednesday, October 26, 6-8pm

Panelists: Renée Fleming, Peggy Cooper Cafritz, Clarice Smith, and Arthur Bloom

Moderator: Robin Strongin

Creativity is a powerful gift used by those in the arts to share their vision, make a statement, forge a movement and hasten healing.  Join us for a provocative discussion with noted soprano Renée Fleming, Washington art patron and education advocate Peggy Cooper Cafritz, distinguished artist Clarice Smith and American composer and pianist, and the founder and director of MusiCorps Wounded Warrior Band, Arthur Bloom.

Moderator:  Robin Strongin, Founder, Disruptive Women in Health Care

Welcome:  6:00

Discussion:  6:15 – 7:00
Q&A: 7:00 – 7:30
Light reception: 7:30–8:00

Please note the exhibition SMITH | PALEY will be open in the lower galleries 5:00 – 6:00

Tickets: $15 / $12 members  Light reception | Visit this link to purchase tickets.

Limited parking on premises and street parking

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A Message from a Millennial to a Millennial: Making Science a National Priority

RWAmerica has always been a leader in medical innovation and scientific discovery. Which is why, when you think of science, it’s easy to picture a lab filled with bright lights, whirring machines, and lots of furrowed eyebrows. The image of a scientist brings to mind one set of those furrowed eyebrows bent over an experiment, with focused energy, putting the last puzzle piece into a mystery that will save the lives of thousands. Unfortunately, today walking into most labs would not yield such an experience. Rather, imagine a tumbleweed blowing by an empty lab while scientists use all their intellectual resources to compete with their peers and mentors for research funding… no whirring, and much less energy focused on solving medical puzzles.

Growing up, I imagined that my generation would gather all of the knowledge painstakingly uncovered by dedicated scientists of the past and release it into the universe to save and improve lives across the world; but that vision no longer seems viable. What has happened to bring us so far from this dream? Better yet – what can we do to get it back?

Without question, we need to provide our most capable and resourceful with the tools required to cure deadly and disabling disease, curb skyrocketing healthcare costs, and secure America’s global leadership in research and development. We need to reject scientific skepticism and complacency that hinders innovation. Most importantly, we need our policymakers to lead this charge.

As the British chemist George Porter said, “Should we force science down the throats of those that have no taste for it? Is it our duty to drag them kicking and screaming into the twenty-first century? I am afraid that it is.” We have a lot of ground to make up. (more…)

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Maternal Mortality Rates Rise in the U.S.

Elayne-CliftFrom the late 1970s through the 1990s, when I worked internationally on women’s health issues, alarm bells sounded regularly about the dramatic and unacceptable rate of maternal mortality in the so-called developing world. Today, those alarm bells are ringing again, but this time because of the rising maternal mortality rate (MMR) here in the U.S.

The MMR is defined as the number of registered maternal deaths due to birth or pregnancy related complications per 100,000 registered live births. Maternal death refers to “the death of a woman while pregnant or within 42 days of termination of pregnancy from any cause related to or aggravated by the pregnancy or its management, but not from accidental or incidental causes.”

In an article published in The New York Times in September, Sabrina Tavernise pointed out that the reduction of maternal mortality worldwide in recent years can rightly be called a public health triumph. In my day, the MMR was extraordinary. An estimated half a million women died annually of preventable pregnancy-related problems. Today that number is thought to be approaching half of that.

But in the U.S. the maternal mortality rate has been rising at an alarming rate. A 2014 report in the Washington Post revealed that maternal deaths related to childbirth had reached its highest rate in a quarter of a century. A woman giving birth then was more likely to die than a woman giving birth in China, one study showed.

At that time, we were one of only eight countries seeing a rise in mortality along with Afghanistan, Greece, and some countries in Africa and Central America. Our MMR was more than double that of Saudi Arabia and more than triple that of the United Kingdom.

Today, “the United States has become an outlier among rich nations in maternal death,” says Sabrina Tavenise. In 2013 there were 28 maternal deaths per 100,000 births, up from 23 in 2005. Recent research shows that the MMR has increased by 27 percent for 48 states and the District of Columbia. In Texas, it has nearly doubled.

“How is it that the United States, a country with some of the most cutting edge medical treatments, has some of the worst maternal mortality rates in the developed world?” Tavenise asked.

The answer is complex. Part of it is that maternal mortality no longer resides in such events as hemorrhage, eclampsia (pregnancy-related high blood pressure) or infection – the three most common causes of maternal death in the developing world. Today, heart problems, diabetes and other chronic medical conditions as well as obesity may be contributing factors. Even record-keeping may have impacted the collection of accurate data until recently when a pregnancy question was added to the U.S. standard death certificate.

One thing is clear, however, and that is that racial disparities play a role, as Dr. Amy Tuteur, a retired OB-GYN who blogs as Skeptical OB, points out. “Maternal mortality is closely tied to race and socio-economic status,” she says. “Often the women most in need of highly technological medical care are failing to get it.”

A sophisticated study carried out in 2016 showed “a significant correlation between state mortality rankings and the percentage of non-Hispanic black women in the delivery population.” While such factors as marital status, number of prenatal visits and C-section rates emerged as factors, the data “strongly suggests that racial disparities in health care availability, access, or utilization by underserved populations” were important indicators. Washington, DC, for example, has the highest maternal mortality ratio in the country but non-Hispanic white patients there have the lowest mortality ratio in the U.S.  Clearly “excellent care is available but is not reaching all the people.”

Whatever the reasons, “the rise [in maternal mortality] is real,” as one researcher put it. And as his colleagues concluded, “Clearly at a time when the World Health Organization reports that 157 of 183 countries had decreases in maternal mortality between 2000 and 2013, the U.S. maternal mortality rate is moving in the wrong direction [when] among 31 countries reporting maternal mortality data, the U.S. ranked 30th.”

These findings are not only alarming (and embarrassing) on their face. They also speak loudly to debates about health care, and particularly women’s reproductive health care, swirling around us in this election year.  Anyone who cares about health care policy, and/or women, should clearly take note.

Elayne Clift writes about women, health, politics and social issues from Saxtons River, Vt.

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Women as Agents of Change in Global Development

Julie Potyraj

In her third article of The “Women As Agents of Change” series, Julie Potyraj delves into the issue of family planning.

Family Planning: An Accessible Option?

In my last article in the “Women as Agents of Change” series, I explored the realm of maternal health. High rates of maternal mortality are especially heartbreaking because of how many of those deaths could be prevented. Across the world, governments and organizations are experimenting with and implementing new strategies to reduce maternal mortality in their countries. But one effective strategy has been consistently underutilized, most likely because of the political barriers and cultural taboos associated with it.

In this article in the “Women as Agents of Change” series, we are discussing access to family planning methods. Contraception, or birth control, is intended to aid in family planning or prevent pregnancy. Birth control methods include diaphragms, condoms, oral contraceptives, intrauterine devices, and hormonal injections. Some methods, like condoms, also offer protection against sexually transmitted diseases. According to USAID, increased access to family planning could prevent up to 30 percent of maternal deaths and save the lives of 1.4 million children. Yet, more than 200 million women still do not have access to family planning methods.

The United Nations Population Fund considers access to “safe and voluntary” family planning a human right. The World Health Organization says that family planning and contraception is “essential to securing the well-being and autonomy of women, while supporting the health and development of communities.” Contraceptives must not only be made available, but people must also feel that they are accessible. Distribution of contraceptives needs to be accompanied by education efforts so that women not only have choices, but also are empowered to make the best choices for themselves about their reproductive health. (more…)

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Coming Into View: Women and Disability

Elayne-CliftWhen disability rights advocate Anastasia Somoza, a young woman with cerebral palsy, gave her rousing speech at the Democratic National Convention in July she did more to bring disability into the mainstream’s view than anyone else in recent memory. She also reminded the world that there is a gender dimension to disability, one too long overlooked, misunderstood or left unaddressed.

One in five American women – about 27 million of them – have a disability. That number, which is growing, includes women veterans. But women with disabilities often have to fight against two forms of discrimination, one related to disability, the other to gender. This is especially true for women living in poverty, women who are members of marginalized ethnic or racial groups or women who are part of the LGBT community.

One problem, grounded both in disability and gender discrimination, is lack of access to appropriate, affordable, quality health care or regular health screenings, not only in the US but everywhere.

This double-edged issue is exacerbated by the employment challenges disabled women face. The United Nations estimates that 75 percent of women with disabilities are unemployed while employed women with disabilities often earn less than their male counterparts or than women without disabilities.

Internationally, gender disparities also exist in education. For example, while the overall literacy rate for people with disabilities worldwide is three percent, UNESCO estimates that it is just one percent for women and girls with disabilities.  (more…)

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WOMEN’S BRAIN HEALTH SERIES: Diverse Women in Clinical Trials—We Can Make a Difference

Marsha Henderson photoToday we wrap up our Disruptive Women WOMEN’S BRAIN HEALTH SERIES with a post by FDA’s Marsha Henderson. 

Clinical research will play an important role in helping to advance our understanding of Alzheimer’s disease and dementia in women. During my 20+ year career at the FDA Office of Women’s Health, I have seen improvements in women’s overall participation in clinical trials and advancements in clinical research design and recruitment. However, I know that despite this progress our work is not done. Many women are still uninformed about clinical trials or they simply haven’t been asked to participate.

My office launched the Diverse Women in Clinical Trials Initiative to help change this reality.

Our initiative strives to promote the participation of diverse populations of women in clinical research by conducting outreach and awareness activities across the country and by supporting workshops to share best practices with researchers and health professionals. We are bringing together a community of everyday women, health professionals, caregivers, researchers and advocates who are raising their voices to encourage women to participate in clinical trials.

Deciding to participate in a clinical trial is a decision that women must make after talking it over with their health care provider and family. As with all medical treatments, you have to consider the risks and benefits of participating. I know firsthand. I made the decision to participate in a clinical trial following surgery for glaucoma. I decided to participate because it might help other people who may need the same surgery in the future. In fact, many women participate in trials because they want to help others. (more…)

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Making women’s heart health a higher national priority

Today, in observance of World Heart Day, we’d like to share a blog post co-authored by one of our Disruptive Women, Dr. Bernadette Melnyk, and Congresswoman Joyce Beatty (D-OH), which was originally published on The Congress Blog on The Hill this morning. Great to see such leadership in the Buckeye State!

There is an old adage that “silence is golden.” But when it comes to heart disease, silence is deadly. A recent study in Circulation that tracked thousands of individuals over a 16-year period found that almost half of all heart attacks did not generate symptoms that would prompt a call for medical help.

 For women, often tragically, there has been a long association between life-ending heart disease and silence. Few realize it, but cardiovascular disease kills more women than any other illness—more, in fact, than all cancers combined. Heart disease rates among young women, particularly African American and Latina women, are on the rise, and death rates have stayed unacceptably high.


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WOMEN’S BRAIN HEALTH SERIES: Meet Myriam Marquez: Lawyer, Fierce Advocate Living with Alzheimer’s

Alzheimer's-Banner-Draft-2_1In the next few decades, the number of persons over the age of 65 with Alzheimer’s disease is set to nearly triple from an estimated 5.2 people today to 13.8 million in 2050. It is an expensive disease–total payments for health and long-term care for all individuals with Alzheimer’s disease and other dementias in 2016 are estimated to be $236 billion, of which $46 billion will be out of pocket. These numbers will continue to challenge our country’s resources, health and long-term care systems, and families for years to come. However, as researchers search for a cure, we must also meet the challenge of living well with Alzheimer’s—and we must start by listening to the voices of those living with Alzheimer’s and other dementias.

As September is World Alzheimer’s month, we took some time to speak with Myriam Marquez. Myriam is an advocate who lives with dementia, and currently serves on the Advisory Council for the National Alzheimer’s Project Act. Myriam was quoted in a paper for the Dementia Action Alliance, saying, “Those of us living with dementia are alive. We can feel, we can laugh, we can cry no matter what stage we are in. There are so many things we can continue to do during the course of the condition.” As Myriam notes, people can live well with Alzheimer’s, and it is important to engage persons living with dementia in developing the care support systems that will make this possible. (more…)

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WOMEN’S BRAIN HEALTH SERIES: Dementia-Friendly Communities for All of Us—Why We Need Them and What You Can Do

Nora Super, Chief, Programs & Services, n4a

Nora Super, Chief, Programs & Services, n4a

While we all hope for a cure for Alzheimer’s disease soon, the reality is that millions of people need support now—and 60% of people with dementia live at home. The good news is that we can all do our part to meaningfully support people with dementia and their care partners.

This is personal for me.  First, as ED of the 2015 White House Conference on Aging (WHCOA), Dementia Friendly America (DFA) was brought to my attention as a grassroots movement in Minnesota providing tools to make communities more dementia-friendly.  At the WHCOA, DFA committed to expand to 15 communities beyond the 35 communities in Minnesota. Today, just one year later, over 80 communities in 30 states are striving to become dementia friendly.

Alzheimer's-Banner-Draft-2_1Second, as a daughter of someone with dementia, I know firsthand the painful experience of encountering health professionals, restaurant servers and store clerks who have no clue how insensitive and destructive their treatment of people with dementia can be.  DFA gives people the resources to create a dementia-friendly environment across all sectors—from banks to transportation and housing.

That’s why I am proud to co-chair DFA as part of my new role at n4a.   I hope you’ll join us in this essential work to better support people with dementia and their families. (more…)

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WOMEN’S BRAIN HEALTH SERIES: Overcoming Barriers to Care for LGBT Elders with Alzheimer’s

Marcy Adelman, Ph.D., is a psychologist in private practice, founding member of the San Francisco LGBT Dementia Care Oversight Committee, a former member of the San Francisco LGBT Aging Policy Task Force, and co-founder and current Board member of Openhouse, an LGBT senior housing and service organization in San Francisco, California.

Jim and Fred have been a couple for thirty-three years. They had been together for fifteen years, when Fred’s personality began to change. But it was another four years before they got the diagnosis: Alzheimer’s.

Alzheimer's-Banner-Draft-2_1For Jim, the news was doubly challenging. He had no idea what to do about the disease. And he didn’t feel confident that service providers would understand their relationship. Jim was really concerned about how doctors, in-home care providers, and others would react to the couple being gay. Would he not be allowed to remain as Fred’s chief caregiver? Because they weren’t legally married, and still are not, would Jim  be prevented from making day-to-day and life-and-death decisions? Might he even  be stopped from being able  to see his partner?

The American public has become very aware and afraid  of Alzheimer’s. More than 5 million individuals live with it, and that number is expected to triple over the next few decades as more people are living longer (Alzheimer’s Association, 2015). Alzheimer’s is the sixth leading cause of death in the United States and remains the only leading cause of death for which there is no cure (Alzheimer’s Association, 2015).

Yet for LGBT older adults, Alzheimer’s can evoke a double stigma: living with dementia and being LGBT (Adelman, Nolan, and Haskell, 2013). As with everyone else, LGBT older adults fear losing themselves and their memories, being embarrassed or devalued, or simply being avoided. Mostly, people are frightened of becoming completely dependent upon the care of others. (more…)

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WOMEN’S BRAIN HEALTH SERIES: Empathy Gap: Americans Impacted by Alzheimer’s Disease and Candidates Running for National Office

Mary WoolleyPresident and CEO Research!America

Mary Woolley
President and CEO

Almost two-thirds of Americans with Alzheimer’s and other dementias are women. In addition, more women than men shoulder the burden of caring for someone with dementia, according to the Alzheimer’s Association. A recent poll commissioned by the Alzheimer’s Association found that more than half (53%) of women with children under age 18 felt that caregiving for someone with Alzheimer’s disease was more challenging than caring for children. By the year 2050, it is estimated that 13.8 million people age 65 and older in the U.S. will have Alzheimer’s – equivalent to the entire combined population of New York, Los Angeles and Dallas. Given the prevalence of Alzheimer’s and the emotional toll of the disease, it is puzzling that so many candidates running for national office have been essentially silent about what they would do, if elected, to combat this debilitating disease.

Maybe caregivers are just too exhausted, and patients unable, to be stronger advocates for making defeat of this dreadful disease a priority for candidates. But even if they aren’t hearing about Alzheimer’s from people in their own extended families and from among their constituents, there’s another reason candidates should care: Alzheimer’s will bankrupt our nation. A recent Alzheimer’s Association report calculated that total annual payments for health care, long-term care and hospice care for people with Alzheimer’s disease and other dementias are projected to increase from $236 billion in 2016 to more than $1 trillion in 2050.

Alzheimer's-Banner-Draft-2_1Alzheimer’s won’t go away by itself.  As we know from the history of epidemics and public outcry to find solutions – such as the HIV/AIDS movement – it takes robust investments in research and pro-innovation policies before we realize the ability to reverse the trajectory.  Policymakers are key to both those requirements. A majority of Americans (80%) say it is important for the next President and the next Congress to assign a high priority to putting health research and innovation to work to assure continued medical progress, according to a survey commissioned by Research!America, but poll numbers don’t speak as loudly as an advocate’s voice. There simply aren’t enough advocates speaking out to candidates as yet. This reality is demonstrated in additional survey data, which shows that fewer than a quarter of Americans say candidates running for Congress listen to and understand their health concerns, and one-third express similar views for presidential candidates. This adds up to an empathy gap in which voters simply do not believe candidates care about their best interests. (more…)

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WOMEN’S BRAIN HEALTH SERIES: The Health e-Brain Study: Reflecting on the Cognitive Health of the Caregiver


Meryl Comer

Today’s post acknowledges World Alzheimer’s Day by calling attention to the caregivers. Dr. Lathan is the Founder & CEO of AnthroTronix and Meryl Comer, a caregiver who has shared her personal journey through her book, Slow Dancing with a Stranger, is President, Geoffrey Beene Foundation Alzheimer’s Initiative and Founding Partner, 21st Century Brain Trust® and board member of UsAgainstAlzheimer’s.  A huge shout out to Lynn Posluns, President, Women’s Brain Health Initiative, headquartered in Toronto.  Lynn has given us permission to share today’s post which will run in the October 17th issue of the Women’s Brain Health Initiative’s Mind Over Matter® magazine. 


Corinna Lathan, PhD

Every time we go to the doctor’s office, our height, weight, temperature, and blood pressure are meticulously checked and recorded. Those vital signs are important, but we seem to be missing the most important vital sign of all – our brain vital. One in four Americans suffers from conditions that affect brain function such as depression, post-traumatic stress, or Alzheimer’s. And, all of us experience times when our brain is not operating at maximum efficiency.

These same observations apply when caregivers of loved ones with dementia look in the mirror. Over time we forget who we are and ignore early warning signs about our own brain health status. What if there was a “mobile mirror” we could access on our smart phones anytime/anywhere that: 1) objectively measures and feeds-back an early alert on our personal cognitive vitality; 2) links back to a research study that tracks and validates the impact of caregiving; and 3) turns our collective experience into research-worthy data to improve health outcomes and impact policy.

The Health-eBrain Study is a mind-meld of researchers in mobile health innovations, the non-profit, BrightFocus® Foundation, and the Geoffrey Beene Foundation Alzheimer’s Initiative. (more…)

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Glenna Crooks

Stories of the devastation faced by patients and families with Alzheimer’s disease abound. Economic costs are consequential and the social and emotional costs, incalculable.

Thankfully, I’ve not been touched by Alzheimer’s but like most people am aware of the suffering it causes. For that reason, I was delighted to be asked by a clinical society to help them solve a problem: not enough specialists are available to diagnose and adequately treat the growing number of patients. Primary care clinicians need to join in. The specialists had a three-step plan to make that a reality:

  • In the first step, specialists in psychiatry and neurology reviewed Alzheimer’s practice guidelines, tailoring them for primary care.
  • In the second step, specialists and primary care clinicians – in Family Medicine, Internal Medicine, Nursing and Social Work – met to review the tailored guidelines to assure they were easy to follow.
  • In the third step, the revised guidelines were made widely available to primary care clinical groups in medicine, nursing and social work. Even families were informed, to help them participate better as care partners.

You’ve seen these guidelines, right?


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Launching the Disruptive Women Series on Brain Health: “The Brain is Wider than the Sky”

Robin Strongin

Alzheimer's-Banner-Draft-2_1This week we launch our series on Women’s Brain Health.  The statistics are sobering, the diseases cruel, and the percentage of women disproportionately affected by dementia, Alzheimer’s Disease, and other neurologic disorders are staggering and growing.  So too, the number of women who become caregivers– their physical, emotional and financial health draining as a result.  At the same time, the number of remarkable women contributing to the research pipeline and policy apparatus is breathtaking.  Over the next two weeks, we will introduce you to the exciting work these women are contributing to the field.  But before we dive into the turbulent waters, I am sharing the sublime poetry of Emily Dickinson.  For me personally, I find it helps to frame the science through the lens of the arts. This particular poem spoke to me about the wonder that is the brain.

Emily Dickinson (1830–86).  Complete Poems.  1924.

THE BRAIN is wider than the sky,
For, put them side by side,
The one the other will include
With ease, and you beside.

The brain is deeper than the sea,
For, hold them, blue to blue,
The one the other will absorb,
As sponges, buckets do.

The brain is just the weight of God,
For, lift them, pound for pound,
And they will differ, if they do,
As syllable from sound.

Dickinson, Emily. The Complete Poems of Emily Dickinson. Boston: Little, Brown, 1924;, 2000.

Read all of the posts in this series:


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