Patrice Milos

Well, it’s been some time since my last contribution to our Disruptive blog but I’m motivated today.  Typically, I’d spend my words touting the latest and greatest contributions of genomic science and technology to healthcare – which is both mind boggling and just beginning.  However, when I asked Robin whether she thought a blog on diversity might capture more attention – she resoundingly said YES given all that has been happening in the world around us.  So let me give it a go.

I am passionate about the important role that women play in healthcare.  We bring so much to our organizations, boards and institutions. Yet the data speaks differently.  Here Liftstream ( has played a key role in providing factual information on women in biotech: Just over 10% of board seats on public biotech companies are occupied by women, but 98% of those boards are chaired by men. Women led companies make up between 3.5-5% of all the venture investments in 2015 and 2016. We must do better! (more…)

Subscribe to our newsletter

Innovative Strategies for Managing Patient Care through Mobility

Nancy Green

This post was originally ran August 11, 2017 on Healthcare Business Today.

The use of mobile technology by the healthcare industry is on the rise. Recent research published in the Journal of the American Medical Informatics Association finds that the use of these new technologies can greatly improve patient care.  It can also improve collaboration between caregivers, payers and clinicians which can increase the quality of care. A mobile, device-empowered, patient consumer has now opened the door for new care and treatment models that can be delivered virtually (video, text) by an equally remote and technology-enabled clinical provider. Mobility solutions can improve collaboration between care teams which helps to reduce medical errors through real-time clinical decision-making,

Mobility has been a strong influencer in the industry, both from an internal perspective (e.g. clinicians wanting to use their own latest technologies), to patients and members who want to use their technology to interact now with their healthcare providers. However, as mobile technology continues to evolve and become a more integral part of patient care, there is a need for healthcare providers to become more innovative and to be more agile, increase their speed, security and the convenience of their offerings in order to support this shift.

Innovation at the Edge Starts with Innovation at the Core

Many people think innovation is about a new product, gadget or application. Customers like to see and hold innovation in their hands.  But some of the most meaningful innovation taking place in the industry today—innovation that has the greatest potential to transform enterprise operations—is in spaces people cannot see.  A great deal of transformative innovation is happening at the system, network, and platform level.  In many ways the real magic is taking place on the inside, behind the machine, tablet, or technology we’re holding in our hands (or wearing on our arms).  It’s the kind of innovation that enables complex systems and machines to talk to each other, exchange critical information, produce seamless user experiences, and transform data into actionable analytics.  That’s where the “wow factor” really is because it’s where the most measurable impact to cost, risk, and productivity really occurs. It’s about the potential of that innovation to engage the customer (not just wow them), drive real business growth, and manage and mitigate risk to your business.

Healthcare Technology is Rapidly Evolving

We’ve come a long way from paper records and physical prescriptions as today’s changing healthcare landscape places an emphasis on improving the quality of and increasing the access to patient care. The shift of patients and healthcare insurance members being able to receive care from virtually anywhere (as happens with banking and shopping) has drastically impacted the healthcare delivery system from all corners, including the payers. This challenges an entire system that was built on the patients coming INTO a facility to receive care to now treating them in an entirely different way. The increased use of mobile and video technologies has expanded the possibilities, but security and quality of care are continued issues from the clinical viewpoint.

New mobile solutions are also enabling patients and healthcare providers to share information in real-time, to better manage patient-directed care plans for issues such as chronic diseases. Effectively sharing data between clinician and patient can help improve patient care. Sharing of patient biometric data including weight, temperature, blood glucose levels, blood pressure, activity and other important statistics through mobile technology to a secure cloud gives the care team important information to better engage with their patient in their health. When patients can easily share their vitals with their healthcare providers, they are also more aware of their health and everyone benefits. (more…)

Subscribe to our newsletter

Beyond the Health Costs of Bullying

Glenna Crooks

Early in my career, I was a School Psychologist. My role at the time involved helping children with special needs by figuring out how they learned best and coaching teachers and parents to do likewise.

In all those years, I never received a referral for bullying behavior or victimization. In recent years, as bullying has reached headlines, as a health policy analyst, I’ve noted the health-related consequences: physical complaints, depression, insomnia, nightmares and even, suicide.

Recently, I saw reports of other costs I want to share. Data from California showed that among 7th, 9th and 11th graders, 10.4% of kids missed school because they felt unsafe from bullying.

Since schools are funded based on attendance rates, those missed school days cost California schools $276 million annually in lost income from the State. About half of that cost was due to bias-based bullying, for race/ethnicity, religion, gender, sexual orientation, or disability.

It’s not just bullies and those they bully who are impacted, it’s all students. Knowing this makes mental health and other prevention programs all the more important.

Subscribe to our newsletter

Newsweek Profiles June 2012 Man of the Month, Matthew Zachary


Shout out to our very own June 2012 Man of the Month, Matthew Zachary, who e graces the cover of Newsweek.

See his story and catch up on the wonderful work he is providing:

Subscribe to our newsletter

Patients and “Their” Medical Records: Crossing the Chasm

Jane Sarasohn-Kahn

This blog was originally published by Health Populi on July 17.

Most physician practices and hospitals in the U.S. have installed electronic health records (EHRs). But in a classic Field of Dreams scenario, we have made patients’ medical records digital, but people aren’t asking for them or accessing them en masse. “How do we make it easier for patients to request and manage their own data?” asks a report from the Office of the National Coordinator of Health IT (ONC), Improving the Health Records Request Process for Patients – Highlights from User Experience Research.

The ONC has been responsible for implementing the HITECH Act’s provisions, ensuring that health care providers have met Meaningful Use criteria for implementing EHRs, and then receiving the financial incentives embedded in the Act for meeting those provisions.

Now that the majority of health care providers in the U.S. have indeed purchased and implemented EHRs, it remains for patients, health consumers, and caregivers to take advantage of them. In my post on the EHR Field of Dreams effect, I highlighted research from the U.S. General Accountability Office that explored the question of how the Department of Health and Human Services should assess the effectiveness of efforts to enhance patient access to EHRs.

The ONC team conducted in-depth interviews with 17 patients to understand their health IT personae and personal workflows for accessing their personal medical records. The research also considered medical record release forms and information for 50 large U.S. health systems and hospitals, and interviewed “insiders” –health care stakeholders inside and outside of ONC — to assess how patients request access to medical records data and look for solutions to improve that process.

Why is it so important for people to access their medical records? By doing so, patients and caregivers can better manage and control their health and well-being, ONC notes, by preventing repeat tests, managing clinical numbers (like blood pressure for heart or glucose for diabetes), and sharing decision making with doctors and other clinicians — together, the process of patient and health engagement which boosts health outcomes for individuals and populations.

The general process of a patient requesting their health data works like this, illustrated by the patient journey of Melissa and Ava Crawford, a mother and toddler daughter portrayed in the ONC report:

  • A patient/consumer makes an initial inquiry
  • The consumer requests the records, which can be done via a paper authorization form (that is then completed and either mailed or faxed to a provider) or online via portal. Sometimes a consumer must write a letter request to the provider and mail or fax that paper ask.
  • The consumer waits for a response, which ONC calls “a bit of a black hole for consumers.” This can be as long as 30 days under the HIPAA law.
  • The health system receives and verifies the request, then verifies the patient’s identify and address.
  • Health systems then fulfill the records request, often a printed copy of the medical record that can be faxed or mailed, PDF files, or a computer disk (CD).

ONC conducted research into the consumer journey along this process to identify opportunities to improve the patient experience of requesting and receiving personal health information.

Most Americans see their doctors entering medical information electronically, and most people say accessing all kinds of medical information is important, the Kaiser Family Foundation learned in a health tracking poll conducted in August 2016. However, there are big gaps in the information available to U.S. patients online, such as prescription drug histories and lab results: two very popularly demanded information categories. And through the consumer-patient demand lens, 1 in 2 U.S. adults said they had no need to access their health information online, as the chart from the KFF poll attests.

How to bridge the chasm between self-health IT, providers and patients? The most effective patient engagement technologies are biometric measurement devices like WiFi scales and glucometers, apps, texting and wearables — with portals ranking last — according to physicians and clinical leaders polled in a New England Journal of Medicine (NEJM) survey published earlier this month.

The top benefit of engaging patients with these technologies is to support people in their efforts to be healthy, and to provide input to providers on how patients are doing when not in the clinic, this research found.

My friend and collaborator Michael Millenson wrote in the BMJ this month about patient-centered care no longer being “enough.” In this era of technology-enabled healthcare, and rising consumerism among patients, three core principles must underpin the relationship between patient and provider:

  • Shared information
  • Shared engagement
  • Shared accountability.

Michael quotes Jay Katz from his book, The Silent World of Doctor and Patient, who talked 35 years ago about the concept of “caring custody.” Jay explained this as, “the idea of physicians’ Aesculapian authority over patients’” being replaced with “mutual trust.”

It is not enough to build and offer a technology “meant” for patients and people to use for their health and healthcare. Trust underpins all health engagement, and must be designed and “baked” into the offering. Today, that trust is built as much on consumer retail experience (the last-best experience someone has had in their daily life, exemplified at this moment by Amazon) as in a new social health contract between providers and patients.

Subscribe to our newsletter

Tech Tonics Podcast: Margaret Laws – Where Non-Profit & For-Profit Healthcare Innovation Collide

This post was originally published by Venture Valkyrie on July 10. 

Margaret Laws has been working at the intersection of the for-profit and not-for-profit healthcare world for many years. This world has had an explosion of activity to find solutions to major public health and personal health challenges; according to Margaret, these worlds are beginning to blur and the newest foundations and non-profits are actively trying to bring the resources and discipline of private business sector to the big problems we are facing in the social sector. Her life’s work has been to straddle both of these worlds and try to bring them together.Margaret Laws

Today Margaret is CEO of HopeLab, an Omidyar Group entity, focused on improving the health and well-being of kids by creating engaging technologies backed by rigorous research. They rely on a combination of rigorous science, user-centered design and strategic partnerships to drive broad impact. The organization works on a wide variety of themes that benefit from the intersection of technology and health, from early childhood health to the mental health of teens.

Margaret is well known in the venture capital world as well, having led the California Health Care Foundation’s innovation investment fund for many years. She is driven by a curiosity to keep learning and a passion for improving how people live and thrive.

We are delighted to host Margaret on Tech Tonics today.

You can listen to her interview now.

Or by going to iTunes by clicking HERE or on the Connected Social Media website HERE.

We are grateful to our sponsor, AARP Market Innovation. for supporting this episode of Tech Tonics. AARP Market Innovation, which works to spark innovation in the market that will benefit the quality of life for people over 50.


Subscribe to our newsletter

Disruptive Women Celebrates Independence Day

Robin Strongin

As we get ready to celebrate July 4th I wanted to share some thoughtful words, difficult questions, and wonder how it is that in 2017, there are many in the US who do not know what it means to be free, to be independent.

We have made such encouraging progress but before too many hotdogs and apple pie are consumed, join me in watching this video.

You might want to go easy on the fireworks, until we can answer Frederick Douglass’ question: “What to the American slave, is your Fourth of July?” Douglass “The Meaning of July 4th for the Negro”

Subscribe to our newsletter

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.


“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:


Subscribe to our newsletter

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

This essay was first published on

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.


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 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

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