As this first full term at the Johns Hopkins Bloomberg School of Public Health has unraveled, I see how much they were prepping us during summer term.  My days have been filled with work, outside activity, caffeine, and a test of how long I can go without sleep and still be productive—similar to what I imagine the days are like for most of the Disruptive Women in Healthcare!  Classes this term included biostatistics, evolution of infectious diseases, program planning for health behavior change, health policy I, and public health economics seminar.  I chose the more rigorous biostatistics course (and will take others throughout the year) in an effort to become more quantitative and enhance my ability to analyze and conduct cost-effectiveness studies and economic evaluations in particular.  The course has its challenges, and there are certainly days when I wonder if I should have taken the other class, fondly known as “baby stats” to fulfill the requirement.  Health policy I: the social and economic determinants of health has been my favorite class, because not only have I learned about what the name of the course suggests (and health disparities is of great interest to me) but also how to develop a conceptual framework for a health policy problem and how to write testimony in an effort to get such an issue on a policymaker’s agenda.

In between classes, I have busied myself with all that the MPH program has to offer outside the classroom, as there is no shortage of activity competing for students’ every “free” moment.  For instance, I am part of a monthly health disparities journal club and am working with a professor on a book about Taiwan’s national health insurance system.  I am also now VP of Communications for Students Promoting HEalthcare REform (SPHERE), an organization spanning the school of public health and school of medicine whose goals are to assure that every person in the United States has the right to affordable, high-quality healthcare and to educate the Hopkins community.  So far the organization has had one event this year in which we heard from a panel that included representatives from Kaiser Family Foundation/The Commonwealth Fund, Johns Hopkins faculty, and local news radio, on the state of play in health reform.  We will be having other health reform educational events throughout the year and one major advocacy event in the spring.  As VP of Communications, I will be promoting events at the school, updating and enhancing our website, and possibly forming partnerships with other similar, local student groups.

(more…)

It has been estimated that 3 out of 4 people report that they do not take their medications as directed, resulting in hundreds of billions of dollars annually in related medical costs and an enormous number of hospital admissions and readmissions.

The reasons for this are complex and varied.  This is a particularly vexing challenge for young, chronically ill patients, for people with mental health diagnoses and for the elderly who may suffer from memory impairment.  Anyone on a complicated drug regimen knows how committed one must be to remain adherent.

For some, cost is an issue while for others side effects can be unpleasant, travelling can compromise the best of intentions as can the need for refrigeration when none is available.  Some patients must take some drugs on an empty stomach and others on a full stomach.  Some patients are simply not ready to accept they have a serious, or lifelong illness. It is complicated.

Because the implications, both clinical as well as financial, are significant, we have invited a number of our Disruptive Women bloggers, as well as some other experts in the field, to join us in a series of policy posts on this critically important issue.

Beginning next week, on October 19th, we will launch our Drug Adherence series which will analyze this challenge from a number of perspectives:  patients, providers, researchers.  In addition, we will also offer innovative solutions.

At the completion of this series, we will compile all the posts into an e-book, just as we did when we tackled the issue of Comparative Effectiveness Research and created our Comparative Effectiveness Research e-book.

If  you or someone you help care for has experiences you would like to share, or you have research, solutions and other thoughts on this topic, I hope you will share them with us.

The giggles started almost immediately.  Ola. Me llamo Meryl.  I am guessing that it was my remarkably un-Spanish sounding accent.  Ever since my chlidren had taken Spanish in middle school and I had tried to help them study, they had marveled at my attempts to pronounce their Spanish vocabulary words but I could not do so no matter how hard I tried.    But I digress.

Ola.   Me llamo Meryl.   We were standing in front of 60+ students ages 7 and 8 in a small village school about 2 hours north of Quito, Ecuador.   We were part of a small group (40+) of Americans who had traveled on “vacation”  to Ecuador on a service/humanitarian trip. Some of us were helping “teach” in the schools; others were helping paint the buildings or construct tables and chairs; and the medical team (of doctors and nurses and physician assistants and social workers and nurse practitioners and translators), was working with local health care workers and seeing people at local clinics and from a bus equipped to function as a clinic on wheels.

So as the U.S. stands poised to spend billions of dollars on health care reform and to assure that all Americans have access to the highest quality and most affordable care  and to equip our physician practices and clinics and hospitals with the best electronic health records money can buy;  and funding the most robust and comprehensive research and comparative effectiveness studies……………….. I keep thinking back to the people who didn’t know what it meant to use a tooth brush; or to have soap to wash their bodies or their clothes;  I keep thinking back to the young, wide eyed children seeking a smile and a simple acknowledgement from their American visitors; hugging us hello each morning and hugging us good bye each afternoon; to the countless women washing their family’s clothes in the seemingly polluted rivers along side the cows and sheep and llamas; to the men and women hunched over their knitting needles and yarn for 10-12 hours/day making hats and sweaters and scarves so that they could take their products to market and hopefully support their families; to the dozens of elderly who were blinded by cataracts and unaware of how relatively “simple” surgery could grant them the gift of eyesight again; to the pungent smells from shoeless and toothless “locales” who had probably not bathed in days or weeks or months; to the stories we shared with each other during our “evening debriefs” and how each of us was humbled by the innocence and pride and self sufficiency of the people we met; and how we were inspired by their sincere and genuine and heartfelt friendship; and how I keep thinking about the interrelationships between health and health care and education and clean water and clean air and basic sanitation and plumbing and running water and personal hygiene and poverty and illiteracy……..and I keep thinking about the possibility of returning to Ecuador next summer…….because it was one of the best summer vacations we ever had.

I’ve been tasked with presenting the genetic and rare disease perspective on comparative effectiveness.

I’ll dispense with ‘rare’ right away.  If by rare, we mean single gene disorders, then perhaps it is a useful designation.

If by rare, we just mean the equivalent of the US definition of orphan disease, i.e., less than 200,000 people in the US, then we should ask a few questions. In the old model of test and drug development, the ‘block buster, body count’, model, rare was a useful designation.  In a system built for BIG, then rare needed a boost.  In the new age of personalized medicine, all conditions are rare. In fact, they are usually an N of 1 after factoring in the myriad of genes involved, epigenetics, environment and so on.  As we enter new ways of dealing with common conditions, they too will be fragmented into dozens, sometimes hundreds, of rare conditions.  Thus rare and common conditions have similar challenges in that realm.  For these reasons, I recommend we lose the word ‘rare’.  I know it has a rich and abundant history in the Orphan Drug Act, but in addition to the aforementioned issues, I think siloing our thinking around disease into these social constructs of abundance of disease misses opportunities that would blossom were we to consider gene families, pathways and targets instead of incidence and prevalence.

Let’s move then to single gene disorders.  Comparative effectiveness would have to go on unemployment if it depended on single gene disorders for its first tasks.  Most single gene disorders do not have a treatment, let alone several.  And once one is developed, it is hard for a second one to be developed given the lack of financial incentives in the old paradigm.  Perhaps a first step in comparative effectiveness for single gene disorders is creation of ANY treatment for these conditions.

On to genetic conditions.  I think genetic conditions have already been spoken for in all of the preceding posts – because all disease is a mix of genes and environment, and so all of the conditions spoke about, either explicitly or implicitly, are genetic to some extent.  That said, I believe genetic diseases, and genomic signatures of attributes of disease, like tumors, offer ways to quantitatively measure expression thereby offering a new level of scientific scrutiny for disease.  While most genetically and genomically authored tests and treatments are nascent and have not yet been scrutinized, we are seeing some assessments of genetic tests, at least.  These are not complete comparative effectiveness studies, but they use methodology that might offer something to the field of comparative effectiveness.  If the field does use methodologies like those of EGAPP, then it will be important to do a broader assessment of the methodology before wide spread implementation.  From the website, “The project’s goal is to establish and evaluate a systematic, evidence-based process for assessing genetic tests and other applications of genomic technology in transition from research to clinical and public health practice.”  There are those who ask why almost all tests that EGAPP has assessed have failed to meet the requirements to pass into clinical practice, when some of these tests have done so in a variety of ways.  EGAPP is a good example of how hard it will be to do comparative effectiveness, since its assessment (far from comparative effectiveness) is so difficult, resource and time consuming.

However, I look forward to our foray into comparative effectiveness.  I believe it is time for the practice of medicine to move from being a cottage industry.  Comparative effectiveness, coming of age in the genomic/informatics era, while we move toward individualized medicine (commonly known as personalized medicine), will be an effective tool if, in the words of the post by Randel before me:

“A fair, open, cooperative public/private process, if designed properly will enhance the information needs of patients, physicians, and scientists and eliminate wasteful and ineffective medical technologies and procedures. Implemented without a fix of the payment system, however, the fear that this may stifle access and innovation will be realized.”  If we wish to move medicine out of the cottage industry realm, reimbursement has to come too.  There are exciting months ahead of us – let’s not call each other names like rare or common, genetic or infectious, popular or unpopular.  No disease, condition, or disorder should be left standing around the edges of the dance floor while the rest are dancing.

Stay tuned to the collaborative discussion about health reform resulting from the flash mob on June 17, 2009.

Inform Health Reform

http://fastercures.blogspot.com/2009/06/fastercures-joins-healthcare-advocates.html

My organization, the National Hispanic Medical Association, is committed to improving the health of Hispanics and other underserved. We support policies that will reform public health and medical services to decrease health care disparities and improve the health status of vulnerable groups. The National Disparities Report by the Agency for Healthcare Research and Quality found that our community has the worst access and quality care compared to non-Hispanics in the nation.

Evidence-based public health and medicine strategies are necessary to decrease variation of service delivery that impacts and rations care to Latinos, especially in our poor neighborhoods. Medical treatment should be based on comparative effectiveness value of treatment strategies that produce the greatest benefit for the Hispanic community at the lowest cost. We recognize that comparative effectiveness research is about value in health care. We also heed the concerns of those who have warned to beware of a “one size fits all” approach that could decrease access to treatments for minority patients. However, NHMA believes that comparative effectiveness research will add to the body of knowledge for reducing health disparities for 1) physicians to use to improve quality care for patients; as well as 2) for administrators to use to improve health systems for delivery in following priority areas:

1. Cultural competence and health literacy research in order to ultimately change behaviors and improve lifestyle in our communities
2. Effective ways of communicating with Hispanic patients and their families
3. Knowledge about health disparities interventions between hospital systems and clinics that have longstanding experience with Hispanic physicians and their patients
4. Innovative research targeted to Hispanic patients and their families
5. Integrated case that is outcomes based – and with mental health and oral health as well as physical health

The following guest post is from Alison McCauley, Internet and Social Media Associate at Amplify Public Affairs.

The National Marrow Donor Program® (NMDP) recently stepped up its donor recruitment efforts with two key changes: (1) Renaming its donor registry, and (2) Expanding its online outreach efforts with social media tools.

The NMDP donor registry, newly renamed Be The Match (BeTheMatch.org), has a Facebook cause, a YouTube channel, a MySpace profile and group, and it has presences on BlackPlanet, Plaxo, and LinkedIn.

The Be The Match website is engaging, it encourages communication among site users, and it facilitates the organization of donor drives, fundraising, and other events.  It even has its own social network – LifeJourneys Transplant Community.  Members, called Champions, can create Tribute pages to share stories, honor or memorialize loved ones, recognize accomplishments or milestones, and raise funds for the Be The Match Foundation.

The marrow donor registry is in desperate need of more donors overall and greater diversity of donors. Finding a genetically compatible bone-marrow donor for a patient in need of a transplants is difficult under any circumstances.  For patients of mixed racial or ethnic backgrounds,the odds of finding a match are even slimmer.  One patient facing this obstacle is Natasha Collins, a 26-year-old medical student with recurrent leukemia.  When doctors said she needed a bone-marrow transplant, Natasha’s community at Yale reached out to communities online to raise awareness and recruit marrow donors, and the results so far are impressive and encouraging.

NMDP’s innovative approach “personalizes the transplant or donation experience and gives other families hope while inspiring people to support our life-saving work.”  It’s an inspirational example of how new media can be used to address communications needs – in this case, NMDP can more effectively communicate with and recruit members of key demographic groups to the marrow donor registry.   This improvement could help save thousands of lives, and even close the gap between white and minority patients’ odds of receiving needed transplants.

Learn more and join the marrow donor registry at BeTheMatch.org

Sources:

Leinwand, Josh “Community: Online Bone Marrow Drive” The Health Care Blog (April 30, 2009)
Landro, Laura “Building Diversity in Bone-Marrow Registries” WSJ.com‘s “The Informed Patient” column (May 27, 2009)
Claeys, Catherine “NMDP Renames Bone Marrow Registry to Be The Match” National Marrow Donor Program News Release (April 7, 2009)

Nearly 20 years ago, I had the opportunity to spend a summer working with the Congressional Caucus for Women’s Issues. Of course, I was absolutely thrilled when they asked me to support the introduction of the Women’s Health Equity Act. However, as I began to research the subject to prepare the fact sheets and advocacy materials to support the legislation, that excitement quickly turned to dismay.

As a bright-eyed college intern, I was shocked to learn about the underlying race and gender disparities within clinical trials and health research. I felt that same sense of disappointment when I started examining the race and ethnic disparities that remain in our health care delivery system today.

Kaiser Permanente recently ran a series of advertisements that highlighted the fact that despite the fact that our nation spends $2.5 trillion on health care, we leave more than 47 million uninsured (not to mention the 20+ million who are underinsured). Without the type of universal coverage that every other industrialized nation provides, our nation is forcing millions to forego care and get sicker.

(more…)

Today, April 28th, is Blog for Fair Pay Day. In recognition of this important day, our guest post by Lisa Codispoti, Senior Counsel for Health and Reproductive Rights, National Women’s Law Center, relates to health care and equal pay.

Between 2000 and 2006, health insurance premiums increased 87.5 percent—4 times more than wages. In addition to the burden of inflated health care costs, women are still paid only 78 cents for every dollar earned by men—with women of color earning even less. In a world where women are earning significantly less than men for comparable work, how can they also afford health care?

Pay inequity for women compounds the issues that already exist with our broken health care system. This is a system that makes unfair practices by insurance companies flourish, such as allowing health to be more expensive for women. For example, women pay higher premiums than men when they try to buy health insurance directly from an insurance company through the individual health insurance market (a practice known as gender rating.) Even worse is that many of these health plans do not cover maternity care or expect women to pay an additional fee (what is called a rider) to gain maternity coverage. Women are then left trying to stretch their already smaller paycheck for a much larger health care bill.

(more…)

Debate surrounding health information technology, particularly electronic health records (EHR), has become increasingly dominant among health care-related discussions around the Web. Forbes.com chatted with Geoff Brown, CIO at Inova Health System (a Virginia-based not-for-profit health care service provider system consisting of hospitals and other health care centers), about the significant role health IT could play “in improving medical care, cutting costs and speeding up treatment.”

The health-care industry is a study in contrasts. On one hand, it employs the best that medical science has to offer. On the other, it is one of the least automated sectors from an IT standpoint.

All of that is about to change, however, spurred as much by the federal government’s push for cost control and accountability in health care as the industry’s own need for modern information exchange. The task for implementing those changes will fall on CIOs at hospitals and clinics, as well as the companies that outsource records and information for doctor’s offices and outpatient facilities.

Read the interview with Geoff Brown about health IT and hospitals

Matthew Holt conducted and posted three interviews relevant to two sides of the current health IT/EHR debate about, to use Holt’s words, “whether the HITECH act should pay for and dictate a specified, certified type of EMR product use OR pay for data and outcomes and not specify how providers get there.” Holt spoke with Glen Tullman, CEO of Allscripts, Mark Leavitt, Chair of CCHIT, and Jonathan Bush, CEO of AthenaHealth during HIMSS09. Describing his take on the two sides of the debate highlighted in these three interivews, Holt explained:

The “cats” support certification and EMR mandating (more or less). The “dogs” think that existing EMRs are often counterproductive and that a mix of other data sources, processes, and patient outreach technologies will get us where we need to in terms of improving outcomes much quicker.

Below is Holt’s interview with “cat” Mark Leavitt:

Find all three interviews on The Health Care Blog

(more…)

A friend and colleague of mine recently sent me a copy of a journal entry that his daughter and a friend wrote while traveling in Africa. Liana Sideli and Liza Reynolds, both 22, are recent graduates of Middlebury College. These remarkable young women are independent (not affiliated with any organization) volunteers, spending several weeks at St. John Bosco Rehabilitation Centre in Kenya.

It is an incredibly moving description of their experiences in Kenya, including a trip they made to accompany a child who was going to see a group of American doctors in the hopes of having another operation he needed to repair injuries he sustained when he was very young. It is an amazing story and one that I think will help to remind us how fortunate we are to have such readily available access to health care when for so many others, it is truly a luxury.

How do we even begin…

We’ve been here in Kitale, Kenya for 6 days and we’re having the time of our lives. After some minor air travel complications which left Liana stuck in London and put Liza on a plane landing in Kenya by herself, we were finally reunited 48 hours later and haven’t left each other’s side since. We’re volunteering at St John Bosco Children’s
Rehabilitation Center (“Bosco”). The center is for poor children who have either been left on the street or come from broken families, but most aren’t orphans. Foster parents don’t exist here because tribes don’t accept other tribes’ children, so often these kids are left hungry, neglected and uneducated. Kenyans put a huge emphasis on education which is why there are so many childrens homes and schools in this area.

On our first day, we got a brief tour of the 3 acre compound and met the staff who are all very friendly and welcoming. It’s pretty quiet during the day because most of the children go to the local primary school, and only the 7 year olds (the new students) are taught at Bosco – this is their first time in a classroom and they are being prepared to go to the local primary school in a year or two. We were just walking around outside and all of a sudden eleven tiny people came running out of their classroom to go play, and they were stopped dead in their tracks at the sight of two big, tall white girls with giant smiles standing there in front of them. They were very shy at first, but they have grown much more comfortable, talkative and affectionate with us over the past week.

(more…)

We are at the beginning of a powerful week.  A week when we celebrate the life of Dr. Martin Luther King, Jr. and a week when we inaugurate America’s first African American President.

We, as a nation, have made progress and I believe Dr. King would be proud.  But our work is far from complete–particularly where health care is concerned.  Another doctor, Dr. John M. Eisenberg, a physician of tremendous stature whose life was also tragically cut short (not by an assassin’s bullet but by brain cancer) was equally passionate about the dignity of life and justice for all Americans.   Dr. Eisenberg, who among other things, served as the Director of the Agency for Health Care Policy and Research (as AHRQ was known back in the day), cared deeply about access to and the integrity of health care for all Americans– regardless of skin color.

Nine years ago, on January 14, 2000, Dr. Eisenberg gave what is, in my opinion, a brilliant speech to the employees of the Department of Health and Human Services.  I want to share his words with all of you today — as a reminder of how far we’ve come, and how far we still have to go.

(more…)

The New York Times recently reported on Health Reform Private House Parties. At this particular party, the participants easily sided with the angels: health care is a right, insurance should cover everything and coverage should be available from government and businesses. There, that was easy. Bet they had a nice time.

Partygoers were not asked for solutions and the devil is always in the details, so let’s use my favorite – flu shots.

First, the New York Times reported that party participants quickly agreed that “…health care was a right…” It makes me wonder; if health care is a “right,” what of “responsibility”?

- If I have a “right” to flu shots to help prevent flu disease, do I have a “responsibility” to get them to protect myself, reduce my medical care costs, improve economic productivity and protect others around me?
- If I don’t get the shot, infect others and cause them to be ill, am I responsible for the cost of their care?
- If others I infect miss work, am I responsible for the cost of temporary workers or losses incurred by their employer? Am I responsible to the government for the loss in taxable productivity?
- What if they die as a result of the flu I transmit to them? Am I culpable?

Second, participants also agreed “…that insurance should cover ‘everything,’ not just some services….”
- If a flu shot is covered and I choose not to get one, should I be required to pay for any doctor visits and medicines I need?
- Should my employer have the right to charge me for the temporary help that might need to be hired to replace me on the job?
- Should Uncle Sam have the right to tax me for earnings I would have made if I had been on the job?
- Should the cost of something so reasonably priced be covered for everyone? Really, I mean everyone? Even the wealthy who can well afford the cost?

Third, participants agreed that “…coverage should be readily available from the government, as well as from employers….” They agreed that individuals and businesses should have to pay a “small health care tax” to fund care.
- Who are they kidding, “small health care tax?” Have they looked at cost projections lately?
- And what about non-coverage barriers? Coverage is only one barrier to care. Ask those in rural areas, anyone not fluent in English or medically literate.

And yes, I’m still harping on flu shots. The season is not nearly over and there are plenty of doses left to protect the nation from the $87.1 billion – or more – that flu could cost us this winter.¹

1. Molinari NA, Ortega-Sanchez IR, Messonnier ML. The annual impact of seasonal influenza in the US: Measuring disease burden and costs. Vaccine 2007;25:5086-5087.

In the spirit of President Elect Obama’s/HHS Secretary Designee Tom Daschle’s efforts to mobilize a grassroots “get out the health” series of house parties, I am re-posting my first Disruptive Women post:

My Top 10 Priorities for the Next HHS Secretary (NOTE: this was written prior to the selection of Tom Daschle–not surprisingly, I was holding out hope for a woman–no offense to Mr. Daschle):

The next Secretary of the US Department of Health and Human Services (DHHS) will have a plate that is not only full, but is overflowing. While all the political rhetoric is focused around access—health insurance for all—there are a number of other critical areas that need immediate attention as well.

Clearly there are many more than 10 priority areas. However, if I just so happened to find myself sitting across from the next Secretary of HHS, I would remind her (just indulge me on that) that she is the Secretary of Health AND Human Services—that for her to make a dent on the health side of things, she must take into account whether people have: the support systems they need, heat, a home, transportation, enough to eat.

Here is my list of the top 10 priorities, in no particular order:

(more…)

Transforming health through genetics. That is the mission of the organization I lead – Genetic Alliance.  Almost 5 years ago I took on the leadership of this organization.  I had some strong inklings at the time, about transformation, about health.  While I was developing Genetic Alliance’s path to transformation, both internally and externally, with some phenomenal colleagues, the world around us was changing in similar fashion.

I sometimes see genetics as a leading edge, a knife that is cutting through the old, crusty, barriers.  It does this perhaps because it is new, but after leading with the novel edge, it has a great deal more punch.  I believe it will be an innovative disruption (a la Clay Christensen) because the health care system will not be able to adjust enough to fit its value inside the system (or lack thereof).

Starting with the power of understanding family history (still perhaps the most powerful genetics tool) to the sophistication of personalized medicine (using genetics and genomics to tailor diagnosis and treatment), genetics and genomics will both buoy and stress an overstressed healthcare system.  It is time for change.  It is in the works, on the drawing tables and in people’s hearts and minds. (more…)