It Takes a Village, and a Tribe: Women Help Women Locally, Globally

The idea that “it takes a village” to raise children and maintain a healthy community has resonated for women all over the world ever since the 1975-85 UN Decade for Women brought women together from every corner of the world. “Women hold up half the sky,” became another mantra heard often at the 1995 review of the Decade known as the Fourth World Conference on Women.

I thought about both expressions, reminders of women’s solidarity, strength, survival skills and commitment to social change and human rights, when I worked with pregnant refugee women in Greece recently.

The experience grew out of my communication with a woman in Montreal who runs a small program that supports pregnant and postpartum women in the city of Thessaloniki and at a refugee camp an hour north of there. Our conversation soon grew into an international dialogue in which a network of women who shared the goal of helping refugees in Greece spoke to each other.  Soon What’s App text messages and emails were flying fast and furious between Canada, Greece, France, the UK and the US. It was women’s networking at its best and it resulted in my being able, along with a friend from France, to offer personal and practical support to women from Syria and various African countries whose stories of seeking refuge would break your heart.

Part of what made this experience interesting and illuminating is that outside of my French physician friend who joined me in Greece, I didn’t know any of these women, although I met one of them in Thessaloniki briefly at the airport.  But all of us were connected to refugee women for the same reason: We shared the goal – and the drive – to help women whose lives were deeply challenging. And so we became a self-identified “village” connected by our cell phones and our commitment to help.

But we were more than a village. We were also a tribe, a group of like-minded people, women in this case, with a common goal and interest. And we were all feminists, who like other social activists, often feel the need to fill an identified vacuum.  We didn’t wait for permission to act or stand by until we were chosen for the task. We just saw a need and were determined to be useful.

I understood this concept of tribal identity and action more clearly when, soon after my return from Greece, I heard Seth Godin, an author and entrepreneur, talk about the importance of “tribes” on NPR’s Ted Radio Hour. He illuminated what he called “disruptive leadership,” which he said begins with a deep understanding of a situation that may not resonate for others. It’s a situation that calls for action and “positive disruption.”

The situation for women refugees in Greece, particularly if they are actively childbearing while living in a refugee camp or isolated apartment, certainly called us to action. These are women exhausted by their long, strenuous and often dangerous journeys. The have been forced to abandon their countries, their extended families, their homes. They often live in subhuman conditions for months, even years. (Many have endured living in tents surrounded by stagnant water through cold winters.) They have no money except for small monthly allowances provided by a United Nations agency that does nothing to address their isolation, boredom and despair. Sometimes their husbands or partners are abusive or absent. It is a huge challenge to survive and to keep their children safe in a place where they have no friends and don’t speak the language. In other words, they live in a huge vacuum. And that is why my tribe goes to Greece.

We have these attributes, identified by Seth Godin in disruptive leaders, in common: We challenge the status quo. We connect people. We commit to our common cause, and our tribe. We share a generous curiosity about others. And together we build a culture where we are safe and understood so that we can do the work of filling the vacuum.

Godin’s thinking gave me a framework – an AHA Moment – in which to contemplate the work I and other women were doing in Greece. The women I met doing the work reminded me of the tribal nature of such connection, which I have personally experienced whether I am with other feminists, other social activists, or other Jewish people.  We “get” each other. We have common histories and experiences that don’t need to be explained. We are safe together and we find joy in what binds us.

The women refugees in Greece reminded me how blessed I am to have various tribes. This particular tribe enabled me to enter a painful vacuum, to fill it to some degree with much needed practical help, emotional support, and in many cases, deep affection.

I wouldn’t have missed being positively disruptive for anything in the world.

Elayne Clift, a doula, has worked internationally in maternal and child health. She writes from Saxtons River, Vt. Her latest book, an anthology, is TAKE CARE: Tales, Tips and Love from Women Caregivers (David Braugher Books, 2017)

 

 

Subscribe to our newsletter

Using “citizen scientists” and crowdsourcing to spur medical progress

Sharon Terry

Preparing for this TEDMED talk gave me a wonderful occasion to pause and reflect.  With the release of the talk I have the space to give more color to experiences and ideas I shared there.

When my husband Pat and I were faced with the pseudoxanthoma elasticum (PXE) diagnosis of our children, we were shocked. The linear, idyllic, progression of life that we expected was derailed. Instead, a surreal unfolding ensued. Day by day we realized that we couldn’t go backwards to BEFORE. We also realized that we would have to go ahead into a space we never knew existed. This foray into biomedical research was beyond groping in the dark for a light switch to illuminate our world; it was like having to find the source of electricity to power us through.

Pat and I had no reference points, no landmarks, no understanding of genes, multi-systemic disease, or the fact that many conditions simply do not have treatments.  We were attempting to plot solutions using tools we had never seen nor heard of before. As Pat said, “We didn’t know a gene from a hubcap”.

Because we were neophytes, we had beginner’s mind and heart. For us, there was immense space around each of the problems we encountered and many opportunities for considering novel solutions.

It was that spaciousness that led us to build a registry and BioBank as our first endeavor. We could see something incredibly obvious, but seemingly unimportant to the research community. We could see that the intense competition between labs to build biospecimen and clinical data collections was thwarting discovery or at least decreasing its speed.

In the talk, I remark that for us the solution to the problem of herding cats – getting scientists to work together – was to move the food. If we aggregated and managed the blood, tissue, and clinical data, the cats would follow. This turned out to be quite true. Building these resources in 1995, opened the field. There was greater opportunity for everyone to work with more clues and to accelerate the quest to understand this premature aging disease.

IMG_3513

“Can we wash your test tubes?”, we asked post docs at Harvard. We did not know that washing test tubes wasn’t really needed, but we did learn to extract DNA from blood, run and score gels, and enter data into excel spreadsheets in the search for the gene. We were very lucky that our neighbor Martha volunteered to watch the kids several nights a week. We would tuck them in, make sure Martha had what she needed, and drive 30 minutes from the suburb of Sharon, MA to Boston. There, from 8 PM to 2 AM, we would perform the rather monotonous activities required to discover the gene. Some of the most creative aspects were trying to pinpoint exactly which Staedtler marker wrote on the film the best, and which kind of light box made the blurry dark and faint lines on the gel more obvious. The most magical part was when Pat put the data into the spreadsheet and saw the locus emerge. His dyslexia allowed him to see patterns the rest of us needed analysis to see.

I remember very well convening our consortium of researchers and discussing the locus – the place likely to harbor the gene responsible for PXE. There were five genes in the locus, which one was it? The young researchers wanted to work on elucidating the genes that no one knew about, rather than the already known ones. We were once again faced with an important opportunity to refocus our researchers. We asked the team if they could put finding the responsible gene above characterizing the unknown genes. The answer, for the most part, was yes and off we went through each of the genes until the magic of the DNA on one family definitively identified ABCC6 as the culprit. That was a happy day. To simplify the filing, Pat and I decided that for the gene patent application, I would be a co-inventor of the gene, along with our colleagues in Hawaii. He could have also been listed, but we thought we were pushing the envelope enough listing one lay inventor.

Filing the gene patent and having it awarded was another point of consternation in the research arena. There were many ethicists who thought it was immoral to patent a gene. For us, it was supremely important that we have a mechanism for ensuring the gene would be freely available for research. To do that we had to be the gene’s stewards. I assigned my rights to the foundation and we could keep our institutional partner from charging high fees for licensing its use. We charged very minimal fees, bringing in only about $100 in licensing fees overall. It’s a good thing that the wonderful pro bono lawyers from K&L Gates did the filings.

As the millennium was flirting with Y2K, we loved ABCC6 more than any other alpha-numeric combo. Our neighbors in Sharon, MA rallied to our cause: served on our board, helped us run wine and beer tastings, did a walkathon and more. We walked into the PXE research world with a naïveté that gave us space to transform the landscape around us, but in that few short years, a great deal had transpired.

From the start, we believed, and never questioned, that the lived experience of people affected by PXE, and their loved ones, was the only reference point. We saw the individual as expert in PXE, not those who by their training or credentials claimed to be experts. A lawyer ethicist slammed us in a journal editorial declaring that “the Terrys will thwart research because of their conflict of interest”; stating that the Terrys’ love for their children will get in the way of letting the ‘real experts’ do their thing. We were stunned that someone would put forward such a hypothesis without evidence and dismiss those who live with the condition day to day as true authorities. It was then that we began to eschew the medical model and work to scale and expand our tools for the largest body of experts: people who have a direct experience of the disease.

I believe that over these years our propensity to follow what emerges, as it emerges, has served our quest well. We work now to retain our beginner’s mind, even as we continue to be shocked by the inability of researchers and institutions to see beyond their own interests, which often are linked to securing funding, getting published, and promoted. We continue to seek ways to show the research community the value of true partnership with individuals, families, and communities. It would be unconscionable in any other industry to leave out the parties who will be the biggest customer of the product. We continue to look for ways to find that tipping point where it will make sense to include the true experts. We welcome all in our quest.

Subscribe to our newsletter

Rock Health: “Share your perspective. Take our survey for State of Women in Healthcare 2017″

We want to share this opportunity with the Disruptive Women audience to participate in a Rock Health Survey. More information below:

Rock Health supports thought leadership by conducting research and analysis of the landscape for women’s leadership in healthcare. As part of its annual report, they are looking to gain a deeper understanding of the challenges and opportunities women encounter when pursuing career and personal goals. Its findings and final report will be published this year. Thank you for your participation!

Take the survey at the following link: https://rockhealth.com/share-your-perspective-take-our-survey-for-state-of-women-in-healthcare-2017

 

Subscribe to our newsletter

Mother and Daughter Dynamic Duo: Fighting For Women’s Health Equality

This essay was first published on MsMagazine.com.

For decades, my mom and I have been a dynamic duo using the arts to creatively fight for women’s rights. And now we are using the arts to fight for my life.

In the ’60-70s, during the burgeoning “Women’s Liberation Movement,” my mother, Bobbi Ausubel, co-wrote America’s first feminist play, How to Make a Woman. After each performance, cutting edge and ruckus consciousness raising groups helped women and men grapple with just how much gender roles dictated their lives.

As a little girl, I couldn’t care less. I played with my toys under the adults’ chairs, impatiently waiting for my parents so we could finally go home. Such was the life of a child of early feminist leaders.

Yet the women’s empowerment message sank in. As an adult, I published a collection of true tales of women’s bold deeds and brazen acts. Then, my mother and I jointly adapted my book for the stage, which resulted in over 1000 events — theatrical productions and open mikes — where audiences shared their own real-life stories of courage.

But now my mom and I have a new focus: we are fighting for me to get my life back. And once again our work involves a cutting-edge women’s issue.

I have ME (Myalgic Encephalomyelitis), a devastating, chronic neuro-immune disease that disables up to 2.5 million Americans, 17-20 million worldwide, a majority of whom are women. The disease is so debilitating, it often leaves me too exhausted to do basic tasks, such as cook a meal. And it leaves my brain so muddled and foggy, I often have to pause mid-sentence to remember what I’m talking about.

ME is commonly known as Chronic Fatigue Syndrome, a belittling name that does not reflect the true devastation of the disease and is now rejected by patients and disease experts alike. There is no cure and no FDA-approved treatment for this disease in which 75-85% of patients are women. It receives little attention and barely any research funding.

Lack of research, coupled with negative stereotypes of either the lazy lady patient or the hysterical woman, has translated to lack of help and treatment for people with ME — both men and women patients. It is not an understatement to say that the federal government neglects ME: For the past 30 years, they have given ME only about $6 million per year in research funding. That’s the same as male pattern baldness, which does not leave anyone bedridden for years.

One quarter of ME patients are homebound or bedridden; 50-75% are unemployed because they are too sick to work. Many, like me, have spent decades tethered to our beds, too weak to function, with little or no medical or governmental assistance. Some people with ME are too weak to feed themselves.

The prestigious National Academy of Medicine (formally the Institute of Medicine), stated in 2015 that ME is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients. They said ME patients are more disabled than other highly disabling diseases, including MS, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.

Yet about 90% of people with ME are undiagnosed or mis-diagnosed because few doctors know enough to diagnose and treat the disease. A majority of doctors are unaware or mis-informed — after all, ME is not taught in medical schools and the CDC disseminates misinformation, such as that exercise will help us (in fact, it hurts us). Even with recent major scientific advances regarding ME, the lack of federal funding for research means highly respected scientists must rely on crowd-funding.

No cure, no treatments, no research funding. It is understandable patients struggle to hold on to hope.

Now, with me bedridden much of the time, my mom and I spend our days organizing demonstrations in front of the US Department of Health and Human Services (actually, this is not unlike putting on a theatrical production), staging our women’s empowerment play as fundraisers for ME research organizations and cutting edge advocacy groups, lobbying Congress with still other advocacy groups and most recently securing State and City Proclamations for ME Awareness Day, held each year on May 12th.

Rivka

Needless to say, in our dynamic duo my mom is more like Batman and I’m more like Robin: She is doing most of the heavy lifting and I’m supporting her as we fight for the rights of people with ME. But we are certainly a team. We want hope and healthcare equality to be granted to these disabled yet neglected Americans. And you should, too. After all, most of them are your mothers, daughters, sisters and women friends.

Rivka Solomon (@RivkaTweets) is a writer in Massachusetts. She is working on a book about her 27 years with ME.

Subscribe to our newsletter

Celiac Disease: A Serious, Life-Changing Condition

Glenna Crooks

I met Paul Graham courtesy of one of his essays.  Then, we talked by phone and I read – no devoured – his book, In Memory of Bread: A Memoir. Pardon the pun. Paul is a professor of English Department at St. Lawrence University in Canton, NY and on July 1 becomes Department Chair. He focuses on fiction and non-fiction creative writing and lives with his wife, Bec and their German shepherds.

Paul, your book is the best description I’ve read about the challenges of being diagnosed with celiac. Can you summarize what happened? Given your experience, what recommendations would you have for clinicians? Should celiac be suspected more than it is? 

My experience was unusual for people with celiac disease. There’s typically a long path to a diagnosis—as long as six years in the US, which is a long time to be suffering and wondering what’s wrong. My onset was actually pretty sudden. Over the holidays in 2012, I came down with what I thought was a stomach bug. My doctor put me on Cipro, and I took that for a week and still felt awful. Then he put me on another antibiotic, Bactrim, and when that didn’t work, Flagyl.

I was allergic to Flagyl and wound up in the ER, where bloodwork showed that I was severely anemic, though they didn’t know why. They sent me home with iron supplements and basically said, “Good luck, buddy.” No one suspected celiac yet, so I kept eating gluten in the form of things I thought would be gentle on my gut, like toast and pasta. I had no idea I was actually poisoning myself.

After three weeks of this, I ended up in the hospital to stay, because of a G.I. bleed. This was the first time anyone mentioned celiac. The G.I. took one look at me and said, “Hey, I think you have celiac disease; either that or Crohn’s.” I was in such bad shape that I needed blood transfusions before he would do an endoscopy and colonoscopy.

Once I received the biopsy results a week or so later—my intestinal microvilli were badly compromised, and the doctor staged my celiac disease between Marsh III a. and Marsh III b.—everything made perfect sense. I went about making the tough dietary changes I had to make, and within six months, I’d gained back most of the weight I’d lost.

Looking back, I actually see signs of celiac disease all the way back into my 20s. A dermatologist misdiagnosed me with eczema; it was actually dermatitis herpetiformis, which is one of the early harbingers of celiac disease. I had stomach flu-like symptoms usually once a year, when things got stressful. As far as I know, I’m the first in my family to be diagnosed, even though celiac is genetic.

Obviously, my doctors completely whiffed. This despite the fact that my symptoms were textbook. But then, 75 % who have celiac are either misdiagnosed or undiagnosed. So, if you’re a clinician who sees more than a hundred patients in a week, the odds are that some of them may have celiac. In fact, 50% of people in America are at genetic risk of celiac because they carry one of the two genes associated with the condition. The takeaway for both my doctor and I—I interviewed him for the book—is that sometimes the cause is hiding in plain sight. Maybe an elimination diet should be a standard suggestion when G.I. problems are recurrent or chronic. I wish he’d questioned me long and hard about my diet—not just what I was eating, but how much.

Paul Graham

Do you think celiac is a serious disease?

I do. Definitely. Among those who don’t understand it, there can be a tendency to misidentify celiac as an allergy, or, even worse, just a trendy dietary practice grounded in a belief that gluten is bad for you. And it can be deceptive, too, because once a person fully recovers from the damage of celiac disease—intestinal biopsy comes back normal, blood panels are all good—they don’t look like they have a disease. But celiac never goes away, you never outgrow it, and the only cure is to not ingest any gluten.

It’s when celiac disease is uncontrolled, either because the person is undiagnosed or misdiagnosed, or noncompliant, or can’t avoid gluten because products are mislabeled, that it’s very serious. When I was at my sickest, my body was literally starving. My gut was absorbing little to no nutrients. I had symptoms you typically see in an anorexic, including edema in my lower legs and feet. My first night in the hospital, I awoke at two in the morning to find four nurses gathered around my bed. Apparently, my heart rate had dropped to 37, setting off an alarm in the ICU (I was on telemetry). I remember telling them that I was a runner, that I was fit, and that my heart rate was always low, which must have struck them as funny.

Sometimes I remember the things I was doing in a state like that—driving, walking my dog, splitting wood—all because I stubbornly refused to give up my routine even though I felt sick, and I think it’s a miracle that I didn’t have an accident that injured me on top of what the disease was doing to my gut.

We’re disruptive on this site, and not exclusively women because we do have a Man of the Month feature, but you’re disrupting the celiac space, right? I don’t know any man so willing to talk about it.

I hear from women in response to my writing and research far more than I hear from men, but my hope in writing the book is to reach more men, because it’s clear that men are also among the many who are undiagnosed or misdiagnosed. I also hope that writing about my experience will inspire more men to get tested and, if they need to, adhere better to a gluten-free diet. I don’t have any hard data on whether dietary compliance rates are lower among men, but it wouldn’t surprise me if they are.

I think that partly because of that “bro code,” if you know what I mean. It seems to me that a guy with celiac disease may be more likely to go out with his buddies, drink his beer, eat his pizza, and say, “Damn the torpedoes and full speed ahead.” For instance, it’s still difficult for me to gather with my friends at the pub to watch a baseball game.

Beyond the gender element, I hope I’m disrupting our dietary response to the disease. There are some good GF products out there, but there are also some really bad ones, and they’re bad for you, too. GF versions often have more fat, sugar, and salt to compensate for the missing gluten. I wish that we could talk less about GF imitations and more about whole foods. You’re overhauling your diet anyway, so why not take it as an opportunity to learn to cook, expand your repertoire, try new foods? The GF industry is very profitable, and some of those profits go back to research and advocacy organizations, so the market is complicated.

In your book is a compelling description of the history and role of wheat in so many world cultures, and the way that bread and “liquid bread,” which the rest of us call beer, is a force that binds us together. In health care these days, we talk about the “social determinants of health” and know that social connection is a key ingredient in being healthy. How has celiac changed your social life? And, what advice would you have for people whose friends have the condition?

Celiac disease has fundamentally changed the way that I relate to other people—strangers and friends—partly because now I’m sometimes eating different foods than other people, but mostly I have to speak up and talk about my dietary needs in social situations. I have to make clear just how sensitive this disease makes me to cross-contamination. And I have to do this every time food is part of a social situation. It’s essential, and yet at first, I found it very difficult to advocate for myself. Again, I think part of that is gendered behavior, not wanting to be different, or special. But part of it is also just my personality. I had to teach myself to communicate with people in my social circles, and I also had to learn the limits of that communication. You can’t reach everyone, and you can’t have every situation go your way. I go to plenty of work functions, for instance, where there’s nothing for me to eat—or, what’s there is not worth eating. There are only a few restaurants in town where I can safely go out with friends. Traveling is stressful.

On the other hand, my self-advocacy has also rewarded me, because now friends think about me all the time. They cook GF dishes, scrub down their cutting boards, and do everything they can to make me feel welcome. The lesson here is to not go into hiding.

As for advice, I think it helps to practice talking with family members first about the demands a medical condition—any medical condition, really, with celiac or type 1 diabetes or allergies—places on you, and how that condition affects your social experience. Once you get comfortable explaining it to your relatives, it will be easier to talk with friends, co-workers, and acquaintances. Just keep working outward. You need to become a really good reader of the context, the social situation, and use that to figure out how much depth you need to go into, and how firmly you need to advocate for yourself.

I’m curious about the experience of college students on your campus, or other schools you know about. What’s life like for them?

This is, to my knowledge, a pretty big hole in the research right now. I know a few college students with celiac disease, and I know it’s not easy for them. One reason is the social aspect. College is about risk-taking in many different ways—intellectually, socially, athletically—and failure is part of the learning process. The thing is, if you have a condition like celiac disease, and you take a few of the smallest risks to be like everyone else by eating or drinking something you shouldn’t, you’re going to get sick, and that’s going to spiral into your classroom experience. I know because it happens to me. I’ve gotten “glutened,” as they say, and while the GI symptoms are unpleasant enough, the inability to think and concentrate sometimes lasts a week, and I often get sick with a cold or flu right after. The stakes are just higher.

There are also the experiences that so many college students hope to have that are just harder when you bring celiac disease to campus. In the dining hall, you have to be careful and may not have many options, depending upon how supportive they are. If you travel with a sports team, you have to think about food. What if the team bus stops at a pizza place on game day, and there’s nothing for you on the menu? If you go abroad for a semester, how will you negotiate the homestay, the meals out, the language barrier?

Fortunately, many colleges have accommodation offices. They’re getting better at supporting students with celiac disease.

You took us along on your journey as you explored recipes for gluten-free bread and cuisines of other cultures, and one reviewer called you a “scholar of stews and ragouts.” Before your diagnosis, you also made beer and if I recall correctly, despite a search for a good gluten-free beer and attempts to brew one yourself, you’d not yet been satisfied with the quality. It’s been a year since the book was published; have you had any success since?

One of the more inspiring aspects of this disease has been the people I’ve met along the way who are all dedicated to beating the game, so to speak, and making grains like millet, buckwheat, and rice behave like wheat or barley. From a brewer or baker’s perspective, that’s a control of chemistry that borders on alchemy. Maybe even voodoo. There’s a brewery called Ghostfish, in Seattle, which is doing some really exciting things with GF brewing. And there’s a homebrew company with a GF beer kit that I’m going to try.

Where I’ve had the most success, actually, is with homemade cider. I have a friend who has an orchard, and every fall we press the apples by hand with an old-fashioned crank press. Then we add some starter in the form of reduced apple juice and maple syrup. To this, we add our champagne yeast, and we let it ferment. The cider is wonderful, but it’s a real delay of gratification. Whereas you can drink an ale a month after brewing, cider takes about six months to condition. It’s worth the wait, though.

You’re working on a new edition of the book. Can you give us a hint about what new things we’ll find there?

Well, you can’t change too much in a book like this—trade is different from textbook publishing. I want to update some facts and figures, for sure. There is some compelling research about the potential implications of reovirus as a trigger for the disease. Prevalence continues to rise, which is not surprising given that half of the US population has a genetic risk, virtually everyone in the US eats gluten and, as people age, they are more likely to suffer a “trigger event” like an accident or a reovirus experience. It seems worthwhile contemplating just how much of a “pre-existing condition” celiac disease is as the health care debate continues to rage.

In the end, though, this book is about the experience of getting celiac disease, and what that means not just personally, but also historically, gastronomically, and socially. The statistics may change, and new products may make the dietary demands sting a little less, but the meaning of turning your back on 10,000 years of culinary, social and agricultural history doesn’t change.

Subscribe to our newsletter

Failure to Launch: How to Avoid the 5 Common Mistakes That Cause Digital Health Ventures to Crash and Burn

Elena Lipson

The digital health market in the first quarter of 2017 enjoyed continued momentum, with 71 deals totaling over $1B (which by some accounts, is actually a conservative estimate).[1]  But don’t let the steady deal flow fool you – it’s extremely challenging to successfully launch a digital health venture and even tougher to sustain it over the long-term.

Many first-time founders and even serial entrepreneurs new to digital health expect to employ a lot of the tactics they learned in business school or had success with in other industries.  They craft well-meaning plans to develop a minimum viable product (MVP) and launch some pilots, and anticipate that the customers and deal flow will follow.  And sometimes it does.  But more often than not these founders encounter unexpected delays and hiccups due to the complex and highly regulated nature of healthcare.

Here are the top five mistakes I’ve seen digital health founders make that can lead to their early demise:

  1. Confusing personal experience with a broader market need: Healthcare is deeply personal and many founders decide to enter this space because they or a loved one has had an unsatisfactory encounter with the healthcare system. While that passion and personal experience can be an attribute, it can also blind founders from seeing other viewpoints and trick them into believing they have the best and/or only solution that solves that problem.  Just because you have experienced something first-hand, does not mean that your problem is going to translate into a broader market need.
  2.  Failing to clearly differentiate and communicate where your solution fits in the larger ecosystem:  Today’s digital health ecosystem is much different than it was 5-10 years ago, when barriers to entry were higher, categories for products and services were more defined and only bigger companies could afford to launch a new solution.  As a result, there are literally thousands of companies vying for customer revenue dollars and it can be hard for a smaller start-up to distinguish itself from competitors. If you fail to differentiate your solution and rise above the noise in the market, you will have a tough time getting anyone’s attention.
  3. Inadequately identifying a paying customer:  It’s also hard to get customers to pay for a digital health solution. In healthcare, consumers rarely believe they should have to pay for a product or service.  It can also be really tough to convince insurance companies that they should pay. So founders are caught between a rock and a hard place. Because the categories in digital health can be blurry at best and it’s hard to define a paying customer, it can be hard to generate awareness and adoption for your solution.
  4. Underestimating the length of the sales cycle: Typically deals in healthcare take about 6-18 months due to the complexity of the ecosystem and the sheer number of stakeholders.  It’s unlikely that you’re going to be that “special” company that lines up pilots, partners and customer much faster.
  5. Oversimplifying the complexities of the regulatory and scientific validation processes:  This one is more common for entrepreneurs who don’t have a healthcare background and may not be aware of how much regulations and clinical validation can slow down your product roadmap and market launch.  There are few shortcuts here to speed things along, although if you’re new to healthcare, a good advisor who can guide you always helps.

Most of these mistakes can be avoided or mitigated if founders would just slow down in the beginning, which ultimately allows them to move faster later on.

Many founders are so eager to develop their MVP or solution and go to market that they gloss over a lot of the upfront work that sets the foundation for their business.  By taking the time at the beginning to focus on their business model, founders will likely uncover many of these challenges and can possibly mitigate them before they destroy what they are trying to build.

Some entrepreneurs may shudder at the idea of spending precious time that could be used on product development to develop their business model.  But I’m not talking about a 50-page business plan that sits on the shelf and collects dust.  Rather, I’m talking about the foundational components for your entire business, including who your customer is; the problems you’re solving for them; your product/market fit; revenue model; and key activities, resources, partners and costs.  In fact, these components should really be driving the product development; you are doing yourself a disservice if you skip over them or only give them cursory consideration.

But let me caution you – this upfront work to define your business model is not fast or easy.

It requires you to go into the market and actually talk with prospective customers and, more importantly, listen with an open mind to the problems that are most important to them.  These insights will help drive you towards a solution that solves their problems, rather than designing a solution and then trying to find a customer with a problem to sell it to.

You also need to have a deep and realistic understanding of where your offering falls in relation to other offerings in the market.  In most cases, there are going to be products and services that are similar (or even perceived to be the same as yours) on the market.  You need to take the time to understand what solutions already exist, as well as what may have failed before you, and position your solution differently to rise above the noise in the crowded market.

This deep understanding of your customer and their problems, coupled with your intimate knowledge of your product/market fit, will help you develop a differentiated value proposition so you don’t get lost amongst a sea of “me too” products and services.

It’s also critical to map out the key activities and resources needed to deliver your value proposition.  This is where you need to go deep and dive into any regulatory requirements (i.e., HIPAA, FDA clearance, reimbursement policies, etc.) along with whether your solution requires clinical trials, which can be lengthy process.  These dependencies need to be built into your activities, resources and costs.

Once you have a good sense of who you are serving and how, you can also develop a revenue model, taking care to identify who is actually going to pay for your solution.

I’ve only really begun to scratch the surface about how to avoid these 5 common pitfalls of digital health entrepreneurs.  In reality, it’s even more nuanced than what I have described and it can also bring up a lot of emotions for founders, causing them to question their assumptions and even their confidence in their solution.  Like I said, this isn’t easy.

If you’d like to learn more, please feel free to reach out to me at elipson@mosaicgrowth.com or on LinkedIn.



[1] Rock Health, “Q1 2017: Business as usual for digital health.”

 


Subscribe to our newsletter

The time is now: Addressing health inequities in rural minority populations

Marva Williams-Lowe, PharmD, MHA

In 1966 Dr. Martin Luther King Jr. gave a speech to the Medical Committee for Human Rights and said “of all the forms of inequality, injustice in healthcare is the most shocking and inhumane.” In 2017 inequality in healthcare still exists and the consequences are striking.

Health inequities or disparities in urban communities are well known and in some cases more resources may be available to address them than in a rural community. In rural previously homogenous communities these issues are even more significant as the minority community begins to grow but the healthcare systems have not changed or are not moving fast enough to keep pace with diversity.

Ethnic disparities in health care cost the U.S. billions of dollars. African Americans, Hispanics and Native American Indians experience higher rates of chronic diseases like diabetes and hypertension than other populations.  In many cases, these increased costs and reduced quality of life and mortality are preventable with wellness programs or disease state management that takes into account the specific population needs.

A May 2017 data summary from the  Centers for Disease Control and Prevention (CDC) shows African Americans ages 18-49 are twice as likely to die from heart disease than whites and African Americans ages 35-64 years are 50% more likely to have high blood pressure than whites. The data shows that African Americans are dying younger from diseases like cancer, diabetes and heart disease than whites. 1

The US spends trillions of dollars on health care each year yet not everyone can afford to access health care when they need it and some populations are more challenged than others in accessing care. If you are able to seek care when you need it, you may or may not be able to afford your medications. If given the choice between paying rent, buying food or getting medication for a chronic illness some patients will choose not to fill their prescriptions. If the prescription is filled, in some cases they will not take them consistently if they believe they can save money in the short term. Drug prices and the impact on patients when they cannot afford medications is a significant issue for our country and contributes to the long term increasing health costs and poor health outcomes. This adds an additional complexity to the rural locations, poverty, race and issues that contribute to an unequal distribution of preventative care, disease management and access to overall healthcare.

Our neighborhoods and communities affect how we live, our daily lives and our well -being. In rural communities where the minority populations are growing and they are underrepresented in healthcare professional and provider positions; gaps are likely to exist. In these communities, health care providers are often not aware of the challenges that these minorities face to access health care or the challenges they face when they meet a provider who is not aware of their economic, environmental, social or cultural challenges.

Consider the story of Janice, an African American who visited a healthcare provider in a rural community. Janice rarely accesses the health care system and when she does, her experiences have not given her confidence that the providers recognize the importance of her difference as a minority. On her last healthcare visit, the provider was not familiar with a rash that she had on her skin which she describes as commonly seen in the African American population. When Janice previously saw a provider in a city well populated with minorities, the provider was familiar with her skin condition, was able to assist and Janice had a positive outcome.

Roberta is an African American who was seen for the first time by a gynecologist in a rural community. After the visit, Roberta reviewed her chart and noticed that the provider incorrectly documented her as Caucasian. Roberta wondered if this was a default setting in the electronic medical record since she lives in a community that was primarily white but is now experiencing a growing population of minorities. Roberta wants her provider to “see” her and recognize her difference as she knows that race can play an important role in how some disease are diagnosed and treated.

While these are not major examples of issues with healthcare interactions in a rural community they do provide an inside view of why minorities may be hesitant to visit a provider, may not be confident that they will be understood or that their differences will be recognized. Ethnic and racial differences have a significant impact on health outcome. The challenges faced by minorities in seeking care can negatively affect their ability to lead healthy lifestyles.

To begin to address these issues we need to create equal opportunities for health at the community level as it affects the overall health status and costs for our nation. Community engagement and partnership with key stakeholders will be a necessary element to create and sustain change. Understanding specific populations, individual culture and barriers are necessary components to establish healthy communities to reduce and one day eliminate inequities in health.

The journey to health equity in the rural locations will require community partnership with health care organizations and the development of programs and policies to address access to services for minority populations. Community discussions, assessments and the development of cultural competencies will be key elements for this journey in rural populations. It will require the creation of equal opportunities for all races and populations to access and participate in healthcare and to experience no gaps in health outcomes. It will be a worthwhile journey to a worthwhile goal.

Dr. Marva Williams-Lowe is the Regional Pharmacy Director for the Dartmouth-Hitchcock Health System. She has responsibility for hospital pharmacy practice and operations including purchasing and inventory management, budget, personnel, medication-related policies and procedures and regulatory compliance. 

 

  1. (2017, May 2). National Center from Chronic Disease Prevention and Health Promotion. African American Health. Retrieved from https://www.cdc.gov/vitalsigns/aahealth/index.html


Subscribe to our newsletter

Saving a life through health IT

Jeri Koester

I recently watched Jimmy Kimmel share a personal story about his new son on live television. His son, Billy Kimmel, was born with an undetected heart defect that required immediate surgery. Because of the great healthcare his son received, Billy lives to see his future.  While my heart ached as I listened to Jimmy’s emotional message, I was overcome with appreciation for all the work medical professionals do within healthcare.

I think of the compassion and care that clinicians provide every day for patient-centered care – within our own healthcare system and beyond.  These prestigious professionals have humanity as their foundation. This also represents my passion within healthcare IT leadership and what drives me to support top-notch patient care.

I witness the daily operations of my colleagues who are responsible for providing IT solutions and services to our healthcare system. These vary from electronic health record (EHR) adoption, medication dispensing solution, enterprise data strategies, cyber security and much more. But above all, we create, implement and improve technology that may help save patient lives.

The solution we create flags a medication that could cause an allergic reaction for a patient. This may save a life.

A reminder system that notifies patients of needed preventive screenings or tests for disease development instead of waiting until the symptoms appear. This may save a life.

A risk model that shows patients most at risk of a heart attack based on algorithms allows clinicians to intervene and engage with the patient before a life-threatening situation occurs. This may save a life.

A completely redundant infrastructure with zero unexpected downtime so a patient waiting for a discussion with their clinician regarding a cancer diagnosis does not have to hear, “We need to reschedule your appointment because our system is down.” This may save a life.

Healthcare IT leadership has never been more important.  Technology is no longer just a tool, but a part of the strategic initiative in moving organizations forward in the ever-evolving healthcare field.  In conversations regarding EHR, interoperability, blockchain, cloud-based applications, and more, care and compassion need to remain at the center. We need to advocate for the safety of our patients when introducing technology.

This can be accomplished in many ways. We can start by talking about it openly.  Our organization is moving forward with strategic initiatives that includes implementing hospital systems, re-platforming legacy applications and supporting shared services efficiencies. In one of our recent meetings, the project manager highlighted our project purpose and objectives to the number of applications we need to retire.  This alone sounds arduous; however, shifting the intent of the meeting to how this is important to our patients restored vision and determination.  The engagement from employees on the project increased significantly when our conversation focused implementing a system safely for our patients.

Additionally, our operational services can benefit from this shift in thinking as well.  We are in the process of implementing lean techniques to how we work.  When discussing the value stream, we place the patient in the center of our “True north” and have established measures to track success as it relates to our customers and patients.  This concept creates a meaning as to why our decisions are important because we can help save lives.

Within our organization, we are expected to deliver solutions for provider efficiency and patient safety. In doing so, we share the same mission and vision of our health system, which is to enrich patient lives. And at the center of our days are patients who need care and compassion. We work to safely implement systems and ensure important data is present when it’s needed most.  Healthcare IT leaders should openly discuss the effect technology has on patient care, to support the humanity of healthcare.

As healthcare leaders are continuously asked to control costs and deliver more, I have found that focusing on the very thing that keeps our hearts warm is a way to move mountains.  And as the amazing providers and staff worked their miracle to save Billy Kimmel, we were all there.  Ensuring the programs ran, the information was available and doing what we can to help save lives.

Jeri Koester is vice president of IT business management at Marshfield Clinic Information Services (MCIS, Inc.). 

 

Subscribe to our newsletter

Sparking Inspiration in Front Line Leaders

Chantel Johnson, PhD, RN

As an operation leader in ambulatory healthcare, my days are filled with “fire-fighting”—staffing the clinics, managing physician schedules, moving improvement work forward, etc.  Little time is spent on individual leadership development.  Let me be more honest–no part of my day is usually spent thinking about leadership.  Yet, it is absolutely essential for all of us to carve out time to further develop ourselves as leaders.

Over the years, I have benefited from various forms of leadership development.   Whether from structured classes, coaching, or making tough mistakes, these experiences have shaped me as a leader.  This year my organization sponsored me to be an inaugural member of the Carol Emmott Fellowship (CEF).  While sitting amongst the other fellows in our first session, I was struck by the deep learning that I was experiencing.   The rich discussions with my colleagues gave me new perspectives on leadership and stretched my thinking.

I went back to work after the first CEF convergence session inspired!  I wanted the leaders under me to be similarly stimulated.  I searched within my company for existing leadership offerings.  Yes, the fundamentals of management were covered well in new manager orientation classes.  How to hire the best, how to use project management skills, how to give presentations were covered nicely by existing programs.  On the other hand, I didn’t see anything like the content I was exposed to at CEF.  I abandoned the idea and felt disappointed for my managers.

A light bulb went on for me a few weeks later while I was having a 1-1 with one of my managers.  I brought up issues of gender in leadership from what I learned in CEF.  I asked her what she has noticed about women leaders in our organization.  I explored her observations on how women leaders behave, how others behave around them.  Interestingly, she hadn’t really thought about it before.  We talked well past our meeting time.  When I was leaving she said that she’d love to have another leadership discussion our next 1-1.  This was the lightbulb moment.  I can bring my managers together and have inspired discussions.  What had held me back was thinking that I needed to be some type of leadership guru.  I thought I needed a degree in leadership or to be an expert on the topics.  I am none of those things. I am not a leadership development expert or professional coach.  However, I have learned some things over my years in leadership.  I am an expert in my own life and experience and that’s enough.

I decided to host a lunch with my managers to talk about gender and leadership.  Gender is a hot topic that most people avoid, either intentionally or because they think gender doesn’t matter anymore.   I invited my managers to this 1 hour “Leadership Lunch and Learn” session.  I sent out a couple of quick homework items before the session.  I asked them to read a short article and watch a Ted Talk video to prime their thinking.  During the session, I gave a 20 minute overview on the gender, women in leadership, and why the topic was important.  We spent the rest of the time in discussion.  I prepared several conversation starters based on the homework and my overview.  I asked them about how gender differences show up in their leadership teams.  I shared my own struggles with being a woman leader with the assumptions and double standards sometimes put on us.  My team came alive with such a dynamic discussion!  One of my managers shared strategies she uses to command more of a leadership presence in meetings.  She does small things like standing up straight and avoiding inflections in her voice.  Another manager jumped in and said she has been struggling with the same issue and wants to try those ideas. They weren’t just talking to me.  They were talking to each other. They were inspiring each other!

For the second offering, I chose the topics of power and influence.  I talked about different forms of power and why influence is such an important leadership quality.  In preparation for the session, I reached out to our executive team.  I gathered their tips for how to: 1) gain influence and 2) how they have effectively used power or seen others misuse it.   My executives appreciated the chance to have their ideas shared with the front line leaders.  My managers loved these tips.  They started guessing which senior leader had given each tip, as a way of connecting to them and matching their impression of them with their words.   I have the third Leadership Lunch and Learn scheduled to talk about our personal leadership philosophies.

The feedback about my sessions have been overwhelmingly positive.  My managers have extended these meeting invitations to their colleagues and supervisors so they can benefit from the content.  My managers shared that they feel valued because I have taken time to offer the sessions.  They said they can tell I really care about them and want to support their growth.

Even more inspiring is that I have noticed my managers are putting their learning into action.  I notice subtle changes in how they present themselves in group, utilizing strategies that increase their presence.   Another example great example of the impact of this type of learning was seen when a manager was recruiting for a supervisor.  She was surprised that one of her star employees hadn’t applied for the position.  From our Lunch and Learn session, my manager understood that frequently women do not apply for promotions when their qualifications are not a perfect match for the position.  She used that information to directly reach out to her star employee and have a discussion with her, ultimately encouraging her to apply.  These are just a few examples of the ripples from the Lunch and Learn sessions.

I have learned so much in this process!  I learned to give myself permission to own my expertise and share it with others.  I learned that I don’t have to wait for someone else to give me “permission” to mentor and coach people.  I don’t have to be a world renowned expert on a topic to still provide meaningful information and spark enlightened conversation.  My team learn more from each other than they do from me.  My role is to help facilitate and guide, prime the pump with some reading and ideas.  I also learned that I don’t have to make it complicated.  No, the Lunch and Learns are not a comprehensive leadership development course.  Grassroots leadership development can be small and still create a huge difference.

I suggest other leaders to give this a try.  Ask your team to join you for lunch.  Pick a leadership topic and dive in.

Subscribe to our newsletter

On Becoming a (Positively) Disruptive Woman, and Passing It on to Others

Christine Malcolm

When I was 22 years old, I received my A.B. honors from the University of Chicago.  I had been taught that the world was entirely open to me.  I wanted to pursue a career in public health and healthcare, and began an intensive job search.  My heart was set on an Administrative Internship at Hennepin County Medical Center – an organization that fit well with my passion for health equity.

I was told by my interviewer that I couldn’t apply for the position because I was female.  He added that the field of health leadership was limited to men, nuns and nurses, and I wasn’t any of them, so I should rethink my career options.  I was stunned.  He told me matter-of-factly what was available to me – a clerical slot – the only position open to a woman who wasn’t clinically trained.  I needed the job, accepted the position, and vowed to prove him wrong.  I then promptly set about “disrupting” the fixed ideas about what was possible for health care, for me, and especially for women like me.

Disrupt Yourself - First, I disrupted myself – I decided to return to the University of Chicago Business School, a place that had always eschewed bias of any kind.   I was one of the 20 percent of the class that was female, and the one of the few who were married. After graduation, I took a challenging job in management consulting, traveling 5 days a week with clients of all kinds, and starting a health strategy practice at what is now Price Waterhouse Coopers.

Accept Disruptive Help - There were several men who opened the door, or sponsored me, starting with my first boss (who made me department administrator).  There were almost no women in leadership, so without men’s help, I would have been stymied.  One of them gave me a raise while I was off on maternity leave – talk about a positive disruptor!  They told me they had confidence in me, and trusted and advised me along the way.  My husband served as a rock of confidence and support – committed to being a two-career family – and we worked hard at helping each other become a success.

Find Other Disruptors, and Support Each Other - Over time, I have been fortunate to be part of two remarkable networks of leaders in the field – first, 20 years in a very senior network of men and women in health, and more recently, with the Women of Impact – a group of health leaders committed to creating positive transformation in the health field.  These networks sustained me, opened my mind, and expanded my notion of what is possible through collective action.  They have continued to positively disrupt my life and purpose.

Align Around a Crystal Clear Disruptive Goal - One woman I met in the last decade was Carol Emmott.  Carol had been a stand for women and diversity throughout her career – in government, in search, as a luminary in the field.  She was committed to leadership development and innovation – founding the California and Massachusetts Health Leadership Colleges, and the CEO Roundtable.  She tragically passed from cancer far too young – and in her last days, asked her family and friends to join together and form the Carol Emmott Fellowship for Leaders in Healthcare.  She wished to ensure that the experiences of our generation would not be repeated – and that women would never feel the sting of having their dreams dashed by limiting beliefs and behaviors.

Seize the Moment for Disruption - Discouragingly, equality statistics reflect a worsening situation over the last eight years.  The latest studies show it may take more than 100 years for women to catch up, and the prospects for women of color are even worse.  Love for Carol, combined with frustration as to the lack of progress that has taken place, motivated the national leaders on our Advisory Board, to work to make this innovative program a reality.

Powerfully Support the Future Generation of Disruptors - We have a remarkable class of 15 mid-career leaders in health who are in our inaugural class – they hold senior positions at some of the leading healthcare providers in the country – including Yale New Haven, Penn Medicine, Henry Ford Health System, University of Miami Health System, Lahey, Carilion, Marshfield Health System, Rush University Medical Center, Palo Alto Medical Foundation, Duke Health System, John Muir and Dartmouth-Hitchcock. Our class includes chief operating officers, physicians, deans, chairs, physician practice leaders, plus people from a variety of other clinical and administrative roles.  They each have committed themselves to creating change that makes health care better by taking on an ambitious Impact Project during their fellowship.  They have the powerful support of their sponsors and champions within their institutions.

Enlist the Assistance of People Who Are Known for Positive Disruption - We have been blessed with the tireless support of over a hundred very senior male and female volunteers – many of whom are “household names” in health care – serving as mentors, leading presentations to the fellows, hosting them in Washington, Chicago, Scottsdale and San Francisco. They demonstrate how when we stand together and for each other, behind huge goals, anything is possible.

This week, the fellows are in Washington DC, where they will learn more about how to create broader impact through advocacy.  They will meet with the Women of Impact, a partner organization, to explore more deeply what might be possible for the fellows as they complete their fellowship and go into the world – together, and in concert with other leaders committed to positive change in our field.  Robin Strongin, a Woman of Impact, has kindly offered this week of posts on Disruptive Women to introduce a few of the fellows and explore how we might jointly move beyond bias.  Thank you, Robin – for being the original Disruptive Woman in Healthcare.

We are certain you will be impressed with our fellows – and their commitment to making healthcare better.  Please join our movement to create a health field where bias and disparities of all kinds will finally be overcome!

 

 

 

 

 

 

 

 

 

 

Carol Emmott Fellowship 2016 Launch from Carol Emmott Fellowship on Vimeo.

Subscribe to our newsletter

Increasing the Diversity of the Physician Workforce

Cynthia Boyd, MD, MBA

“Any economist will tell you that diversification is the key to a secure portfolio. Any geneticist will tell you that diversification is key to maintaining hardy species of plants and animals. But somehow, when it comes to racial politics, the virtues of diversity are lost. Diversity in healthcare is not about fair representation – it is about saving lives.”

– Commissioner George Strait, Associate Vice Chancellor for Public Affairs,

University of California, Berkeley

A more diverse physician workforce is critical in health care and medical education in order to further promote excellence in medical education and accessible, quality health care, particularly to those populations that are underserved and bear the greater burden of health disparities.

For purposes of this discussion the Association of American Medical Colleges (AAMC) and Sullivan Commission definition is used of racial and ethnic diversity in the health care workforce.  This encompasses several characteristics including: (1) the representation of all racial and ethnic groups from the community served within a given health care agency, institution, or system; (2) the system-wide incorporation of diverse skills, talents, and ideas from those racial and ethnic groups; and (3) the sharing of professional-development opportunities and resources, as well as responsibilities and power among all racial and ethnic groups and at all levels of a given agency, institution, or system. [1]

While the basic concept of “diversity” among human beings encompasses numerous dimensions and characteristics such as socioeconomic status, gender, sexual orientation, race, ethnicity, religion, and disabilities, the specific focus of this discussion is to address the problematic state of racial and ethnic diversity in the physician workforce and to highlight practices at the medical school admissions level that could facilitate expansion of diversity within this workforce. Accordingly, diversity is defined here quantitatively as the numeric representation of all racial and ethnic populations.

The following is a quantitative summation of the state of diversity in today’s physician workforce with an overview of the current race and ethnicity demographic trends in medical education. Overall, numbers of racial and ethnic minorities among medical school applicants, matriculants, graduates, as well as full-time faculty, have remained relatively stable over the past five years.  The 2015 medical school acceptance rate is 41.1%. Acceptance rates differ among select racial and ethnic subgroups. White (44%), Asian (42%), and Hispanic or Latino (42%) applicants all have comparatively similar acceptance rates. African American or Black applicants have a lower acceptance rate of 34%.[2]

The figures below from the AAMC highlight both single year data from 2015 and longitudinal data over time to provide a more robust understanding of diversity and inclusion medical education trends.  While Whites are 47.8% of applicants, the percentage of accepted White applicants is 51.2%. This reflects, in Figure 1, a 44% acceptance rate for White applicants. Asians are 19.6% and Hispanics or Latinos are 6.3% of accepted medical students. Asian and Hispanic or Latino applicants both have a 42% acceptance rate. Blacks or African Americans make up 6.4% of accepted applicants, a decline from 7.8% of all applicants. The Black or African American acceptance rate of 34% is lower than White, Asian, and Hispanic or Latino acceptance rates.[3]

boyd_figure 1

                                                    Figure 1: AAMC 2016

The medical school acceptance rate is a pivotal data point for applicants, undergraduate advisors, medical school admissions committees, and medical education policymakers.  Percentages of medical school graduates by race and ethnicity have remained consistent over time. Whites (58.8%) and Asians (19.8%) continue to represent the largest proportion of medical school graduates, with the two groups composing more than three-quarters of medical students graduating in 2015. Also for 2015, Whites make up 47.8% of applicants and 51.2% of matriculants and remain the majority of graduates. As noted in Figure 2 below, the 2015 medical school graduates comprise 5.7% Black or African Americans and 4.6% Hispanic or Latinos. [4]

boyd_figure 2

Figure 2: AAMC 2016

Medical school applicants, students, and graduates are not the only stakeholder groups for which medical education leaders wish to increase diversity, inclusion, and equity. The medical education professoriate must also strive to become more diverse. An increase in female medical school graduates has been met with a rising number of full-time female medical school faculty.

                

boyd_figure 3Figure 3: AAMC 2016

Currently, 39% of full-time faculties are female; however, as noted in Figure 3, female faculty from some racial and ethnic minority groups continue to be underrepresented in academic medicine. Only 4% of full-time faculty identify as Black or African American, Latino or Hispanic, Native American or Alaska Native, or Native Hawaiian or Pacific Islander females.  This stark racial and ethnic disparity among full-time faculty is mirrored at the department chair level, with women of color representing only 3% of department chairs in academic medicine.[5]

It is clear from these very disparate data that the leadership of our academic institutions have a responsibility and must be held accountable as key stakeholders in improving the diversity of the physician workforce.  The admissions process and Admissions Committees at our medical schools represent the gateway to medicine.  It is the initial and most critical step in determining who will have the opportunity to become a future physician and who will not.  Admissions committees play a very important and significant role in identifying and developing meaningful policies, procedures, and strategies for increasing the racial and ethnic diversity in the student body.

Here are some of the key elements and components that medical school admissions committees should employ and utilize as a foundation in order to enroll a more diverse student body:

  • The medical school’s leadership and other key stakeholders are vital in connection with efforts to achieve diversity goals
  • Making certain that enrolling and training a diverse class of medical students is central to one’s medical school’s educational missions
  • Developing policy statements that articulate the benefits associated with a diverse student body, including with respect to race and ethnicity
  • An admissions committee mission statement that is aligned with that of the medical school;
  • A diversity statement that defines the diversity and inclusion goals of the committee
    • A committee membership that broadly represents the diverse interests of the medical school, including representation of basic scientists and clinical faculty members, men and women, and based on institutional policies other persons, including students, residents and community members at large.
    • And, since a diverse student body makes up a core value in medical education, the admissions committee should also include groups underrepresented in medicine
  • Policies and procedures that support the diversity goals of the medical school, including holistic review
  • Ongoing review of data related to the students who are enrolled (or not) at the medical school

It takes time and patience to implement many of these changes.  The holistic review in admissions process requires ongoing education and training.   As noted in the AAMC’s Roadmap to Diversity, “effective development of and implementation of diversity-related policies depend in part on a clear articulation of policies designed to advance those goals and a process of continual examination regarding the educational goals medical schools seek and the ways in which race or ethnicity policies advance these goals.”[6]  In my work as dean for admissions and recruitment I am fortunate to assist in the enrollment of some incredible students who are committed to addressing and improving health disparities and making a difference in the lives of  individuals who are underserved in our local communities and our nation.  I continue to strive to do everything I can possibly do to contribute and to make certain that the gate is open as widely as possible when they are ready to take that next crucial step towards a career in medicine.

Dr. Cynthia Boyd is vice president for corporate compliance and chief compliance officer at Rush University Medical Center. She is associate professor of medicine on the faculty at Rush Medical College of Rush University and currently serves as the dean for admissions and recruitment for Rush Medical College.

 


[1] Missing Persons: Minorities in the Health Professions – A Report of the Sullivan Commission on Diversity in the Healthcare Workforce 2004 and AAMC Underrepresented Definition: https://www.aamc.org/initiatives/urm/

[2] Diversity in medical education: facts and figures2016.  Washington, DC: AAMC;2011,2015 http://www.aamcdiversityfactsandfigures2016.org/report-section/section-3/

[3] ibid

[4] ibid

[5] Lautenberger D, Moses A, Castillo-Page LC. An overview of women full-time medical school faculty of color.

AAMC Analysis in Brief. 2016;16(4):1-2.

[6] Roadmap to Diversity: Key Legal and Educational Policy Foundations for Medical School, AAMC 2008


Subscribe to our newsletter

Finding a place

Doug Riddle

I grew up in the middle of Orange County, California. A neighborhood so homogenous that I saw the Catholic kids in their plaid skirts and white shirts as alien and exotic. We passed on the sidewalk beside the parochial school playground with caution and wonderment. I was 14 and in high school before I realized that my friend, Buzz, was Jewish. This was the 1950s and early 1960s and sensitivity to differences meant not picking on the red-headed kid.

In fits and starts, I found my eyes and ears opened to the reality of a different world–a larger world–than mine. In August of 1966, the Southeast L.A. community of Watts exploded and at 16 I was glued to the radio for six nights, reading the newspaper and trying to understand what was so wrong that tens of thousands of people would take the streets in rage. A few years later, I found myself spending a year in Washington, D.C., at Howard University in my ongoing quest to make sense of this larger world.

It came as a shock to discover that as a white kid in a blue-collar home, I had led a life of privilege. I was free to pursue whatever course my intelligence, talent, and character would choose. That consciousness only emerged because I was confronted repeatedly by the constraints that faced my friends and colleagues who were African-American or Hispanic or female. I was on the swim team at Howard and I remember traveling with the team and the feelings of pained anger and embarrassment every time a white waitress would seek out my table first, the only one with a white kid, to take a breakfast order. The shock turned into determination to actively pursue justice in whatever ways I could.

It turns out not everyone was thrilled by my growing commitment to fairness and equal access. In 1972 I took some time off from seminary to work on the quadrennial conference of the newly merged United Methodist Church. I was able to arrange free office space in the regional headquarters of the church so we could make arrangements for the thousands of youth and young adults we hoped to bring to Atlanta to experience the church in action. I still have a vivid memory of an administrator, his face red, mouth twisted into an angry grimace, yelling at me for betraying this favor. My sin? I shared the opportunity with the Black and the Women’s caucuses.

I’m still struggling with what the appropriate contribution of a privileged white male is to justice in work and society. It’s easy to believe in equal access and opportunity. It’s not hard to speak out for it. The challenges have to do with finding the right roles. For the Carol Emmott Fellowship for Women in Healthcare, I serve as a designer and facilitator of the curriculum. In that role, I bring my expertise in creating learning experiences but I am clearly not an expert in women’s leadership. I don’t teach these brilliant women leaders how to be better leaders because I’m not in a position to teach. What I can do is create a relatively safe and challenging space in which they can reflect, connect, build community, and decide how to apply their considerable gifts.

So what is a privileged older white male to do? I’m following a few clues but I think the ongoing conversation is more important than what I’ve figured out so far, but here are three ideas:

  1. We all have to speak out for justice, equity, and fairness. In so many of the organizations with whom I work, one of the only minority senior roles is the chief diversity and inclusion officer. Is this the consequence of the bias that injustice is “their problem,” and not a problem for us all? I have to be visible and active in asserting that justice is a human issue and its absence harms everyone.
  2. I have to challenge my assumptions every day. Unconscious bias, stereotypes, and old habits conspire to keep me from the most useful role, which is as student. I want to always be a better student and owning my ignorance makes me easier to teach and faster to learn. Curiosity and a willingness to engage in the conversations of mutual discovery seem fundamental to moving beyond the limiting assumptions.
  3. I can speak to people like me. There are plenty of people in my demographic who are in charge of things, sometimes holding on for dear life to their control. I can be a voice for change, for understanding, for the creation of a more just and inclusive organization. I can be a voice for equity and correcting past injustice for those who need to hear it.

As an older white male, I’m in a good place to ensure that commitment to justice is not seen as the exclusive obligation of those who are faced with injustice. This society belongs to all of us and we are all diminished if anyone is limited because of race or gender or origin or handicap or sexual orientation or any other factor besides their ability and willingness to contribute. We can all be leaders in ending limits to justice.

 

Subscribe to our newsletter

Turn Down The Radio So You Can See Better: Distractions in Healthcare

Thomasine Gorry

The scene is familiar to any ophthalmologist: Your long-time patient, Mrs. Howell, sits centered in the grand exam chair. She is elderly but not frail. Today she is unusually nervous. Her daughter and son (whom I have never previously met) occupy the bench that lines right wall of every exam room. On my left, a familiar Pennsylvania Department of Motor Vehicles form rests on the computer keyboard– a place where my technicians know it won’t be overlooked.

Everyone knows good vision is essential for safe driving.   Vision is critical and vision is measurable.   Eye doctors are, therefore, routinely asked to assess a patient’s ability to drive.   That “simple” DMV form asks a monumental question.  Can this patient safely perform the complex 360 degree task of driving?  It is a task that occurs in motion, endowed with horsepower, gasoline and governed by human decision making.  The assessment is complex but our instruments are blunt. So we begin by measuring the visual acuity.  This means, in basic terms, how far down the eye chart the patient can read.  The smaller the letter, the better the vision.   Like many complex assessments, what is measurable is only part of the assessment.   It is a greater challenge to measure the qualitative experience.   Understanding Mrs. Howell’s ability to drive demands far more than vision alone.  If you really want to assess her driving, ask her about the most challenging situation—driving in the rain at night where headlights confront the driver directly.  Glare bounces off a wet road into the eye and contrast reduction turns lines into shadows.  “How do you manage that?” I ask.

Her answer:        “I turn down the radio so I can see better.”

I smile at the irony but I never ignore the insight.   In challenging situations, eliminate distractions.  Focus.  You will perform better.

We in healthcare are driving at night in the rain.  Challenges abound.  Just like driving, the face to face medical encounter is a complex, 360 degree task.  It occurs in motion, is endowed with intellectual power, emotion and is ultimately governed by human decision making.  We drive along a course set by the patient and the healthcare system in which we work.

Like highways, these systems can be well designed but remain full of hazards.  None can be completely eliminated.  Some hazards we create ourselves.  Some we simply allow to continue.  These hazards — that we create and ignore — need our attention now so that they do not deplete our attention when patients need it.    Consider the competing demands for the attention of a primary care physician.  A 2010 study showed that, in addition to a full patient schedule, primary care doctors spent 27% of the day on phone calls, received 17 patient related emails, 12 medication refill requests, 20 lab results and reviewed 13 consult reports.  The roads are busy and full of distractions.  Healthcare is not unique.  Industries and individuals themselves share  this “Age of Distraction.”    We face busy screens showing thousands of data points.    Well meaning alarms, alerts, and advisories flash incessantly.  The initial impact is just a nuisance.  But if distractions accumulate, we may inadvertently find electronics more compelling than the patient.

Many industries have begun to examine the problem.  “Alarm Fatigue” is now a recognized patient safety concern by The Joint Commission and the National Patient Safety Foundation.  Some studies showing that 72 to 99% of inpatient alarms are false. A 2015 Microsoft advertising study demonstrated that the human attention span endures for only 8 seconds, famously less than that of a goldfish.  When limited attention span meets hundreds of distractions, it creates an environment ripe for medical errors. Worse, it insidiously generates feelings of isolation in patients and providers.   Somedays I fearfully wonder if I might get better Press Ganey scores if we surveyed the computer and not the patient.

So what is the answer?   It is not to offer blanket criticism of Electronic Health Records (EHR).  Rather, it is a time for harsh editing.  Remove the extraneous.  Clinicians must actively engage with our operations and technology teams so that we “meaningfully” adapt to this new world.  This is a call for further engagement, for scientific design and use of health information technology to enhance the eternal elements of medicine, which remains at it’s core, an ancient healing profession, most successful when it is unfettered by distraction.

It is time to return to the patient and take Mrs. Howell’s sage advice:  “Turn down the radio so you can see better.”

Thomasine Gorry, MD, MGA is a practicing ophthalmologist and Vice Chair for Quality at the Scheie Eye Institute. She also leads the Quality Domain of Clinical Operations for the Clinical Practices of the University of Pennsylvania Health System.


Subscribe to our newsletter

Honoring Carol Emmott, PhD: Meet the Fellows Coming to Washington, DC

Robin Strongin

The statistics are draining. We know that while “women comprise over 75% of the healthcare workforce, only 8% of the top 100 hospitals in the US are led by a female CEO.”  It isn’t just hospitals, of course. All you have to do is look at the numbers across the board (and in board rooms), in venture funding, in pay disparities, and all through-out the health care sector, and it is hard not to be frustrated and outraged. As Disruptive Women in Health Care, we are also driven to action.

One of the best ways to drive change is to highlight the great work of others and jump in and collaborate. In that spirit, we will be highlighting a week-long series of blog posts from a remarkable group of women leaders: they are part of the class of 2016-17 Carol Emmott Fellows.

I was honored to be named a Woman of Impact (WOI) and through that phenomenal network was introduced by another WOI, Christine Malcolm, to the Carol Emmott Fellowship.

CAROL B. EMMOTT, PHD

emmott image

1946-2015

Carol B. Emmott helped pioneer the significant expansion of the role of women in careers in the health profession. She completed her Ph.D. in Health Policy in 1975 at a time of great transformation in both the health industry and in professional prospects for women. Learn more about Dr. Emmott and the Fellowship project: http://carolemmottfellowship.org/

Carol B. Emmott Fellowship for Emerging Female Health Leaders from Joey Xanders on Vimeo.






















Subscribe to our newsletter

Age Out Loud

Glenna Crooks

May is Older Americans Month. The theme this year, established by the Administration for Community Living is Age Out Loud. It encourages wellness, knowing rights, remaining engaged and exploring new things.

I like the idea of “exploring new things” and the one I’d suggest we explore the support people need to age-well-in-place. Aging challenges faced by older people throughout history are increasingly complicated as traditional “villages” support has eroded and, for many people, no longer exist. This happened for several reasons, among them:

  • Changes in family size and structure. Families today are smaller and family structures are disrupted. Only 20% of families are once-married couples with children, the remainder are single-parent families and divorced-and-remarried families, often in complicated configurations. In addition, 14 million seniors are “elder orphans,” aging alone with no family. That number will grow, not just because of the size of the Boomer generation but because one-third of Boomers never had children.
  • Mobility. The US is the most mobile country in the world, often separating families geographically:  40% of people move, on average, 676 miles away from where they were raised, and 20% of seniors want to relocate during retirement, often at distances from family who could support them.
  • Employment for women outside the home. Women, traditionally caregivers for others, are now in the workforce and unavailable to provide uncompensated care

These factors are further complicated by lives three decades longer, with legal, financial and health matters far more complex than in times past. The consequences? Economic losses from higher costs and lower productivity.

  • When outside help is necessary, annual and on average, seniors and/or their families incur non-reimbursable annual costs of $40,000 for in-home aides (per 8-hour shift, Adult Day Care costs of $17,250, assisted living costs of $43,200 annually and nursing home costs of $82,000 – $92,000. Though Medicare and Medicaid covers some types of long-term care and some people have LTC insurance, those are rarely adequate.
  • Families who turn to agencies for planning help to determine care needs and identify community resources pay $1,000 for an initial assessment and $200 per hour for ongoing consultations.
  • Family caregivers, on average, lose $142,700 in wages, $131,350 in Social Security benefits, and $50,000 in pension payments when they reduce hours or leave the workforce to provide care.
  • Employer-paid health costs for family-caregiving employees are 8% higher than for non-caregiving employees, due to the health impact of caregiving: depression, diabetes, hypertension and pulmonary disease, adding $13 billion to annual employer health care costs.
  • Employers suffer productivity losses. Employed caregivers miss seven days of work more than other employees, a substantial burden for small or lean businesses with little staff redundancy or when employees hold mission-critical positions. Employed caregiving employees are also less “present” at work, using work hours to make appointments, coordinate with other caregivers and manage crises.
  • Hospitals are penalized when Medicare patients are readmitted for the same cause within 30 days of discharge even when factors outside the control of the healthcare system are the cause, as when patients don’t have help to take medicines properly, coordinate care or get transportation to shop for healthy food.
  • Local, state and national governments incur costs as they adapt and provide safety nets. For example, transportation once provided by family and friends, is increasingly provided by local transit authorities. The estimated cost impact to operate transportation for older people nationally now stands at $4.2 billion, with the biggest cost increase falling on local governments, community-based organizations and rural areas. The greatest government costs are incurred when caregivers exhaust their abilities and older adults become eligible for nursing home coverage through Medicaid.

In my work these days, I see people who are far better prepared for the eventuality of their death than for the reality that they will live an additional three decades of life and often, without the village support their ancestors took for granted.

That makes this a good time to go “exploring the new thing” of a “new era” villages.

Subscribe to our newsletter