So many women responded to Lindsay’s story, that three years ago she started Bright Pink, a new, fun, breast cancer education, awareness and support group that has grown to 10 chapters nationwide.

Instead of hosting sad support group meetings in dank church basements, bright pink girls take yoga classes or belly dance together. Bright pink sends out monthly text messages reminding women to feel themselves up. Next month, they’re hostessing a burlesque show demonstrating self-exams.

“For so long people have been talking about this in the same kind of mundane way and it’s not making a difference. You have to come in there and shake things up a little bit — and that’s what we’re trying to do,” Lindsay says.

Q: You had a double mastectomy when you were 23?
A: I did.

Q: Why?
A: I have a very strong history of both breast and ovarian cancer. My mom’s mother and grandmother died six days apart, both from breast cancer — they were 39 and 58. And my mom was only 18 when it happened.

In addition, there were 11 other relatives — aunts, and cousins on my mom’s side of the family that have passed away from these diseases.

I remember being a little girl and my mom saying one day I might have to deal with this. It was always present. It was never something that got brushed off and we said, ‘Oh, we’ll just deal with it tomorrow.” My mom was very adamant. She went to the doctor consistently every six months. When they said, ‘Come back in a year.’ She said, ‘I’ll see you in six months.’
Because of that, she really detected her own breast cancer. She had a completely clean mammogram. But she noticed a swelling on the side of her right breast. And she said, ‘I’m not leaving until I find out what this is.’ The doctor said, ‘You’re crazy. We just did a mammogram, you’re absolutely fine.’ She said, ‘You need to check it out.’

Sure enough, they went in and did a biopsy and they hit something and it was Stage 1 breast cancer.
And 10 months later she was diagnosed with ovarian cancer.

Q: Oh no!
A: She went through a lot at 41. I was 12 at the time. I grew up very fast. I switched from being a middle-schooler to Miss Mom helping care for my little brother. It was just really, really draining and hard and not an easy kind of thing. You know what I mean?

I graduated from Michigan in 2005 and decided to undergo genetic testing.

I went into it thinking, ‘Maybe I don’t need to be so focused on my breast cancer risk. On my fathers’ side of the family there’s no cancer.’ It was a 50-50 chance.

Unfortunately, I tested positive for the breast cancer gene — BRAC-1 in July 2005.

I made the decision in August 2006 — I was one of the youngest patients nationwide ever to have the preventative surgery. Do I want to do surveillance? Do I want to do surgery? What’s this going to mean? I’m single now.

It was very, very hard. I felt very alone through all of it. I wasn’t a cancer survivor, but yet I wasn’t like everybody else.

Before the surgery, I longed to speak to somebody who was young, and “normal”, and fun and had gone through it and came out on the other side and happy and okay, and actually did love her body and felt okay, and met Mr. Right.

I felt very alone. So I said, ‘I need to make this different for so many other people.’ I originally told my story about my surgery to the Chicago Tribune and the next day I was on the Today show.
It’s a shocking story. Here’s a woman whose healthy, who makes a decision when she’s young to remove her healthy breast tissue. More than 1,000 young women in their 20s and 30s reached out to the writers and producers. Time and time again, the story wasn’t necessarily I had genetic testing, it was, ‘My mom had breast cancer or my grandma had ovarian cancer.’

That’s really where the idea for Bright Pink came from. To know this information, is an opportunity generations of women never had. To be able to identify your risk, develop a strategy to be proactive, and live the rest of your life and be happy and live cancer free.

Q: What are you doing new with Bright Pink right now?
A: One of our favorite new initiatives is the underwire alert.

Q: So it’s a text message reminding you to do a breast exam?
A: It is. All they have to do is text the work PINK to the short code 59227 and they’re automatically enrolled to send them a fun, and cheeky message to just be aware of their breasts. To touch them, and look at them, and feel them and speak up if something changes. We’re trying to get thousands and thousands of women. This is one great, easy activity that all women can do.

Q: So are those shower hangy reminder things just not doing the job?
A: Here’s the problem, when you look at it every single day, it loses its meaning.

Q: And I don’t really like it in my shower. I took it down.
A: It’s true. And cancer societies are moving away from rigid once a month exams. You do this. You rub here. And you go in three circles. We do think the idea of once a month is really critical. It’s not enough to drive you crazy, and it’s consistent enough to notice any changes. We talk about how breast cancer can present itself, we talk about cancer fighting foods you can eat. Is that going to prevent you from getting breast cancer? I’m not God, I can ‘t control that. But there are things you can do to reduce your risk, and that’s something we really believe in.

Q: So what do the messages say? You say they’re cheeky.
A: If you look at the web site it says mind your melons, touch your tatas, treasure your chest. Whether you’re rocking 32A’s or DD’s, we want you to go to second base on yourself once a month…

Q: So how is it working out?
A: It’s great. We have a lot of people that love the idea of it. But we’re trying to get the idea aspect to get into getting people to actually signing up. We try to go into crowded places — every time we have a mic, we take a second and ask everyone to pull out their cell phones and text the code. The feedback we’re getting is, ‘Wow it actually makes a difference now I’m actually aware of my breasts.’

Here’s a sample text:
“Your boyfriend’s not the only one who should be touching your breasts. You know your body best. Go ahead, look for changes and feel yourself up.”

Isn’t this fun?

For so long people have been talking about this in the same kind of mundane way and it’s not making a difference. You have to come in there and shake things up a little bit — and that’s what we’re trying to do.

Q: What else are you doing to shake things up?

A: We run these breast ovarian health 101 educational sessions. They’ve run in Chicago, we’re rolling them out nationally now. It’s a 40 minute session with an ob/gyn or a genetic counselor — we’ve gone everywhere from churches and schools to next Wednesday we’re going to a Hispanic Community Center. We say everything you need to know about your breasts, and then we have a pink cupcake and champagne reception.

And all of our chapters have once-a-month outreach programs.

It’s not your typical support group. When you think of a support group most people think of sitting around a table and everyone’s crying and it’s just so depressing. At Bright Pink, it’s all about doing something active. A lot of our girls have gone through really hard experiences — from losing a mother to a sister to cancer. To dealing with what it’s like to have a scare — finding something and waiting for the results. Their lives have been deeply touched by this disease. And yet there’s unbelievable hope and determination.

So they’ll do a yoga class or a belly dancing session. Our New York girls went hula-hooping. Our Atlanta girls did a Mexican fiesta night.

And they’ll have an organized discussion around a topic related to being young and high-risk. Anything from, If you’ve had a mastectomy, what happens when your shirt comes off with a guy you’ve just started dating? At what point is it right to bring this up? What can you expect in your first genetic counseling appointment? Or, how do you get your family to talk about whose had cancer when they just don’t want to talk about it.

Q: So you’ve taken support groups to fun activities that people actually want to do — but they can still share while they’re there.

A: FUN activities that people want to go to. If I was in a support group the idea of going would be, like, drudgery.

They’re all there supporting each other. And it’s a very kind environment. I know sometimes when you have a lot of women together, it can get a little clicky or a little kooky. Our girls have this deep positive energy that binds them.

Q: Tell me what you’re doing with LuxGoddess.com.
A: LuxGoddess has been a really incredible partnership. The founder and CEO, Scott Kluth, made a very generous donation to us.
There’s so much overlap between the target audiences. The same girls that are coming to our education sessions, are the same women he’s targeting that are looking for a pair of Seven jeans. Or a cute top they’re waiting to go on sale.

Q: So what are you guys doing together?
A: It’s a cause-marking partnership. They sponsor a lot of our events. And our educational information is on their website. And also, a percentage of sales goes to Bright Pink.

It’s a win, win, win all the way around.

There’s so many similarities between the LuxGoddess shopper and the Bright Pink girl.

Q: So what’s next for you?
A: We’re expanding our ambassador network. Chapters around the country are about to launch in Boston, San Francisco and San Antonio.

Our whole focus this year is underserved communities — like African American lesbian women.

A lot of people don’t realize that lesbian women are more likely to die of breast cancer.

Q: Why?
A: They’re not more likely to develop. But based on good health care and good access to health care and insurance

Q: Lesbian women have less access to health insurance?
A: They’re less likely to have good insurance.

Q: Lesbian women?
A: Lesbian women. They’re less likely to go to their doctor’s office and feel comfortable talking to their doctor about their issues.

Q: Why?
A: Think about the questions they ask at your ob/gyn. Like, How many partners have you had? Just the sexual questions can sometimes be quite daunting for them.

Q: Why would it be any different? I don’t think my gynocologist cares who I sleep with.
A: I think there’s just a lot of stereotypes that still exist. This is just what the statistics are.

Q: What else is new?
A: In a couple weeks were doing an educational burlesque show. That’s off-the-wall — talk about wild.

Q: What is it going to be?
A: Have you ever been to a burlesque show?

Q: No. I’ve seen Gypsy.
A: They do songs and skits, their shirts come off. They’re going to be integrating health facts. They may do a demonstration on how to do a breast exam. It’s a great way to reach that community. Last year we did one and had 220 women which was phenomenal.

Everyone has been having that old man with gray hair get up and talk. And he’s not getting through to this demographic.
We need a new way to have the conversation.

Q: And you’re doing it.

To find out more about how to become a Bright Pink Girl check out www.bebrightpink.org.

To get an underwire alert started sign up at this link: http://www.bebrightpink.org/programs/support-community/breast-self-exam-text-reminder/.

Related posts:

1. Taking A Stand Against the U.S. Preventive Services Task Force’s “New Breast Cancer Guidelines”
2. An Interview with the Queen(s) of the Hearts
3. What the new cervical cancer screening guidelines mean for women

President Obama’s 2011 HHS budget builds on the American Recovery and Reinvestment Act (AARA) investment in federally qualified health centers (FQHCs), providing an additional $290 million for further expansions.  With this increase, the administration estimates that health centers will be able to serve more than 20 million individuals in FY 2011.

Combined with other AARA provisions, this is good news for some of our nation’s “safety net” providers, including FQHCs, as well as public and nonprofit hospitals that treat many low income patients.  But there’s also a growing hole in the safety net as free medical clinics struggle to survive the current economic recession.

In a recently released research brief on safety net providers by the Robert Wood Johnson Foundation’s Center for Studying Health System Change^[1], the authors note, “while many FQHCs have benefitted from both the recent ARRA funding and federal expansion grants over the past 10 years, many free clinics without FQHC status were facing more serious financial strains than safety net hospitals and FQHCs.”  The report goes on to quote one FQHC executive as saying, “FQHCs got money, and free clinics are worried about keeping their doors open…There’s a big have and have-nots disparity.”

FQHCs include community health centers, public housing centers and some outpatient programs.  These providers receive federal payments for qualified services and are eligible for stimulus funds and federal expansion grants.  In contrast, free clinics do not receive federal payments and they are not eligible for funding available to FQHCs.  Instead, they depend primarily on private philanthropy and a team of volunteer physicians to provide care to the uninsured.

Having served recently on the board of a free medical clinic, I can attest to their value in local communities.  In addition to serving as a major provider of primary care services for the uninsured, our free clinic had an expansive network of volunteer specialty physicians who provided free services not available through the FQHC located just blocks away from the clinic.  In fact, the FQHC would refer their patients to the free clinic in order that they might receive needed specialty services.

Certainly, I’m not suggesting that free clinics receive federal funding for medical services provided by volunteer physicians.  But the attendant administrative and resource costs of providing primary and specialty care services can be significant and funding from existing sources is languishing.  It is time to recognize the unique role of all safety net providers of care, including free clinics, and develop new measures for federal support.  Each has a valuable role to play in our health care safety net for the uninsured.

Related posts:

1. Nurses, Lawsuits and Patient Safety
2. Drug & Food Safety in the Age of Social Media and Transparency
3. Stop Running Red Lights AND Pay for Health Care Reform

The following guest post by Dr. Peggy Polaneczky, a New York-based physician, was recently featured on the Better Health blog.The original post can be found on Dr. Polaneczky’s The Blog that Ate Manhattan: Food, Considerations & Second Opinions blog.

First off, I need to address those who think they’re being brilliantly funny comparing Apple’s new product name to a feminine hygiene product – making comments like “Does it come with wings?” and “It’s light and easy to use, but can you swim with it?” (these are the cleaner comments I’ve seen), or calling for the next generation ITampon.

Since when did the word “Pad” become unusable in public discourse? And where were these folks when IBM came out with their Think Pad? It’s stupid, 12-year old funny and just plain dumb. Grow up, ladies and gents.

Now, on to more serious matters.

Is the IPad, as some are suggesting, the next big thing in Medicine? Dana Blakenhorn at ZDNet thinks so, calling medicine the IPad’s “Sweet Spot”-

It’s what your doctor has been dreaming of ever ince the PC revolution began. Imagine this in a flip-up case, in every examination room at your clinic. The nurse sets up the chart, the doctor walks in with a stylus and examines you, and when he’s done the chart goes into the file and the prescription is waiting at the desk for you, printed clearly, along with your Coordination of Care Record. Hand the nurse your credit card and you’re off.

• Dr Anonymous gives his thoughts on the Ipad – It’s the software, stupid.
• John Halemka weighs in with some thoughtful questions about the Ipad’s suitability for patient care, but concludes it is “definitely worth a pilot”.
• MobiHealth News takes the pulse of the Healthcare industry on the Ipad – Bottom line – not just yet.
• IMedicalApps shows one place in healthcare where the Ipad shines – Anatomy Imaging
• Brandon Glenn at Medcity does a great job summarizing the Ipad’s limitations
• Chris Paton at the Health Informatics Forum likes the Ipad for docs – the comments from software developers are well worth a read if you want to see what the future for the Ipad may hold
• Joseph Kim at Kevin, MD has 10 ways to use the IPad in your practice (none of which includes an EMR)
• Steve Woodruff , writing at Kevin Md, thinks the IPad will be a game changer in Healthcare. The operative word, in my opinion, is “will”.
• Mike Kirkwood thinks a few EMR vendors, most notable EPIC (the one I use) are poised to enter the Iphone/IPad world. Now that would be very nice….

Related posts:

1. A healthcare and medication organizer that could help medication adherence
2. Ten Good Things About The U.S. Healthcare System
3. Blog roundup: Healthcare IT and Meaningful Use

Back in the day when I was a newspaper reporter I completed a biomedical ethics fellowship at the University of Virginia Medical Center in Charlottesville, VA. In addition to sitting in on the hospital’s bioethics committee discussions, I spent much of the week shadowing a nurse in the ICU.

They called her the Death Nurse because her job was to intervene with doctors, nurses, patients and families when the time came for a patient to move from the ICU to hospice. While her title was Supportive Care, she flat out told her me her job was to help people die; not actively, but from behind the scenes by helping patients and those caring for them understand when the time had come to move from curative care to supportive care (email me if you’d like a copy of the article I wrote about her).

When I asked why her job was necessary, she told me it was because it was so hard for doctors, nurses, patients and even families to face the reality of death. Her thoughts were echoed by a doctor there who was completing a critical care fellowship: “A lot of us don’t know what to say because we’re so uncomfortable with death,” he told me. “When someone who is not part of the team says this is ridiculous, it’s time to stop, we listen.”

I bring this up because I completed that fellowship 13 years ago. One would hope that things had changed since then, that more openness and discussions about end-of-life care would have moved us towards a recognition that sometimes death is not a failure, but a success. Unfortunately, however, that doesn’t appear to be the case. Last week, a study published in the online edition of the journal Cancer on the results of a national survey of physicians caring for cancer patients found that most doctors aid they would “not discuss end-of-life options with terminally ill patients who are feeling well, and instead would wait for symptoms or until there are no more treatments to offer.”

Why? Why not talk to your patients about how they want to die, just as you talk to them about how they want to live, how they want to address their disease? Why not talk to them about how you will manage their pain and keep them comfortable as death approaches? How you hope this will give them and their families time to  reach closure in their personal and financial relationships. Give them time to come to terms with this next stage of their life.

These are not easy discussions to have. They take time and, for many doctors, additional training. Earlier versions of the healthcare reform bills now pending would have provided reimbursement under Medicare for doctors who had such discussions with their patients; but, of course, cries of “death panels” doomed that component.

So, I ask you, what is the answer? How do we learn to talk about death with one another, to stop fearing it, to understand that there is no way of avoiding it, and to accept that a death we have some control over will generally be a much better death than one that sneaks up on us?

Let me hear your comments.

Related posts:

1. Violent Death: Preventing Chronic Disease Isn’t Enough
2. Going Beyond Meaningful Use to Meet the Needs of Patients
3. Watch, Discuss and Engage: HHS Secretary Sebelius & Health Reform Director Nancy-Ann DeParle

The following guest post on the subject of cervical cancer screening guidelines is written by Susan Wysocki, WHNP-BC, FAANP, president and CEO of the National Association of Nurse Practitioners in Women’s Health and Susan Scanlan, chair of the National Council of Women’s Organizations. The article below initially appeared on America Media Forum’s website.

It’s not surprising that women are confused about the recently changed recommendations for cancer screening and prevention. New guidelines from the American College of Obstetricians and Gynecologists (ACOG) – the leading medical group that provides health care for women – say women should wait longer to begin cervical-cancer screening and that they should be screened less frequently. On the heels of similar changes to breast-cancer screening guidelines, it’s understandable that many women might see this as a step backward.

On the contrary, the new cervical-cancer screening recommendations reflect advances in our understanding of this disease and in tools now available to prevent it. More importantly, they present an opportunity to educate women about the significant opportunity we have to further prevent – if not eliminate – cervical cancer.

New ACOG screening guidelines recommend women should begin getting Pap tests at age 21 (as opposed to within three years of becoming sexually active) and that, from ages 21 to 29, most women should have Pap tests every two years instead of annually. Additionally, screening for women 30 and older with a history of normal Pap test results now moves to every three years.

To understand the rationale for these changes, it’s important to first know how the disease develops. Cervical cancer is caused by “high-risk” types of the human papillomavirus (HPV), a common sexually transmitted infection. Most women will have HPV at some point in their lives, but their immune systems will typically clear the virus without symptoms or treatment. HPV infections that persist over time – typically many years – can cause cell changes that can potentially lead to cervical cancer. Because cervical cancer is slow-growing, it generally allows ample time for screening to detect problems that can be treated before the cancer can develop. The majority who die of cervical cancer in the U.S. have either never been screened or have not been screened in many years.

A Pap test is the traditional means of screening for cervical cancer. It involves examining cervical cells under a microscope to detect abnormalities that can then be treated, if necessary. Since its use became widespread 60 years ago, the Pap test has helped to significantly reduce cervical cancer rates. So, if the Pap test has been such a success, why change the guidelines? First, newer research shows that cervical cancer is extremely rare in women under 21. Cervical abnormalities among sexually active girls in this age group are common, but they typically go away on their own. Newer studies, however, show that treatment for these abnormalities that would most likely resolve themselves can cause later pregnancy complications, such as premature birth. This is one instance in which treatment can cause more harm than good. By delaying the start of screening, we can hopefully avoid unnecessary treatment.

The rationale for less-frequent screening is similar. Evidence shows that screening with a Pap test every year does not offer any additional benefit over screening every two or three years. Waiting longer between screenings can help avoid unnecessary treatment of abnormalities that likely will go away on their own.

Also, new technological advances offer women 30 and older – the group most at risk for cervical cancer – more protection against this disease. For these women, an HPV test is now available and uses molecular technology to determine whether HPV is present. An HPV infection that continues for years is what leads to increased risk of developing cervical cancer. If an HPV infection is found, a woman can be monitored more closely by her clinician. A negative HPV test in tandem with a normal Pap test can give a clinician and her patient increased reassurance that the woman is not at risk of developing cervical cancer for at least the next three years. The HPV test also is used for women of all ages to help clarify inconclusive Pap test results. The HPV test is not used routinely in women under 30 because HPV is so common in this age group that a positive HPV test could lead to unnecessary treatment.

While screening is critical to preventing cervical cancer, two HPV vaccines – the first-ever vaccines to fight a cancer – are now FDA-approved and offer significant potential to help reduce cervical cancer rates.

Remember, these new screening recommendations are simply guidelines and that clinicians, in conjunction with patients, need to determine the most appropriate cervical-cancer prevention approach for each woman. These new guidelines provide an opportunity for more conversation on this issue between women and their health-care providers. After all, few things are better for women’s health than educated and empowered patients.

Related posts:

1. Taking A Stand Against the U.S. Preventive Services Task Force’s “New Breast Cancer Guidelines”
2. Breast Cancer Screening: Where The Rubber Meets The Road
3. Ovarian Cancer: Actress Kathy Bates Shares Her Story

Rachel’s areas of focus include maternal, newborn and child health and reproductive health. She has authored research briefs on private sector involvement in health systems, commercial sexual exploitation, the integration of maternal, newborn and child health and family planning, in addition to a variety of other publications from the GHC.

Women’s economic autonomy and employment opportunities are crucial to their health, particularly their reproductive health. Each year, 536,000 women die, nearly 10 million are disabled, and 250 million years of reproductive life are lost because of poor reproductive health. Enabling women’s economic sovereignty has the potential to allow women to take control of their fertility – they would have the resources to access family planning services, effectively space wanted pregnancies and limit unsafe abortions – all of which are leading factors to poor maternal health.

Limited economic security, limited access to education and poor employment opportunities contribute to lack of access to health services, education and employment, and lead to high fertility rates and increased maternal mortality and morbidity. In many countries, women are not allowed to own property and are limited in their economic opportunities, restricting their economic security and limiting access to reproductive health services. Lack of finances is particularly problematic for women who are heads of households or married women who have little say in family finances.

Limited financial autonomy for women also has a profound impact on their children, resulting in generations of young people who have limited opportunities for education and employment. Young girls are particularly vulnerable, as they often miss out on educational or employment opportunities because they have to provide care for sick relatives or have children at a young age. Economic empowerment could break this circle of poverty and ensure economic security and improved health for generations to come.

In addition to affecting women, families and future generations, poor reproductive health has an impact on the broader community and nation. Rapid population growth because lack of contraception exacerbates poverty, as scare resources must be distributed among more people, resulting in small investments per person and exacerbated financial hardship. Poor reproductive health also stalls economies, exacerbates food shortages, and contributes to national security issues.

The economic security of women has an important impact on their reproductive health. Opportunities for economic empowerment, such as VirtuArte, are absolutely essential to ensuring that women have access to reproductive health services, including family planning, birth spacing and safe abortions. Without good reproductive health, women, families, communities, and nations in developing countries will continue to face poverty, economic insecurity and poor health.

Related posts:

1. The Value of Health: Creating Economic Security in the Developing World: Disruptive Women in Health Care is Going Global with a New Series and e-Book on Global Health
2. Health and Economic Security in the US: Why Community Health Centers Matter
3. The Value of Health: Creating Economic Security in the Developing World

The following guest post by Peg Willingham, Senior Director for External Affairs for Aeras Global TB Vaccine Foundation, is part of Disruptive Women’s “The Value of Health: Creating Economic Security in the Developing World” series.

The development of new TB vaccines is a vast and expensive undertaking requiring an all-hands-on-deck approach.  Private foundations and a select group of European governments are supporting this work, but the US government lags woefully behind.  The US established itself as a world leader in HIV/AIDS through President’s Emergency Plan for AIDS Relief (PEPFAR) and contributions to the Global Fund to Fight AIDS, TB and Malaria.  The U.S. also is a dominant force behind ramped up HIV and malaria vaccine research.  Yet, the US has failed to take up TB vaccine research as a priority funding area.  Because of PEPFAR, many are now living full lives with HIV, only to be struck down by TB.   Why this lack of action on TB?

The pandemic is ever-more dangerous as it evolves globally and thousands of Americans become ill with TB each year.  TB is a disease of poverty and it kills nearly as many women as all causes of maternal mortality.  Active TB disease hampers a mother’s ability to care for her family and robs many children of their mothers.  Children, especially those living in the crowded conditions of poverty, are also at greater risk of becoming infected with TB when a parent or family member has TB.

The good news is that there is tremendous momentum in TB vaccine research, with seven TB vaccine candidates currently undergoing clinical testing.  My organization, Aeras Global TB Vaccine Foundation, and a handful of others are doing all we can with available resources to accelerate the process to get new, safe and effective vaccines to those who need them so urgently.  Although Aeras is a non-profit research organization, developing new vaccines is still a complex and expensive undertaking.  One large-scale clinical trial designed for potential licensure of a vaccine will cost approximately $160 million.  Yet this represents a smart investment, because a TB vaccine would be save millions of dollars – and lives.  As the Obama administration and Congress outlines their foreign assistance agendas, TB vaccine research should be prioritized. Investment in preventing TB today will translate into fewer resources in treatment and lost productivity – and lives – in the future.

Related posts:

1. Preparing for the Fourth Decade of AIDS
2. Poll: Should the H1N1 vaccine be mandatory?
3. Global Health Starts at Home

The following guest post — part of Disruptive Women’s drug adherence

Patient adherence represents a rare “win-win” in health care, so it’s no surprise that all sectors have been busy seeking potential solutions. Technology companies have developed reminder gadgets, employers have redesigned benefit plans to remove cost barriers to chronic disease medications, pharmaceutical companies have developed combination drugs to simplify regimens, and providers have begun implementing new patient education and counseling techniques. However, efforts to date have remained largely sector specific and silo-ed. An earlier post by Janet Wright correctly pointed out that poor adherence is not the fault of patients, but rather the fault of the entire health care system. Ideally, we need to move beyond silo-ed efforts and develop a system-wide approach to the problem.

Recognizing that, the New England Healthcare Institute (NEHI) launched a multi-stakeholder initiative earlier this year to identify system-wide solutions to poor adherence. Several of these solutions have been mentioned in this series such as improved care coordination and the use of health information technology. However, I would like to highlight a fundamental system-wide change that has not yet been discussed in great detail, and was one of the critical findings from NEHI’s multi-sector expert roundtable and issue brief:  payment reform.

It is important to keep in mind that patient medication adherence is ultimately a quality issue.  As NEHI’s research shows, the link between medication adherence and improved health outcomes is clear.  Studies of chronic disease patients have shown that adherent patients have significantly lower hospitalization rates than nonadherent patients. Unfortunately, the current payment model is not designed to reward providers for patient outcomes – of which medication adherence may qualify as either a means toward that end or an endpoint itself. Either way, using payment reform to move away from rewarding volume of services and towards rewarding good health outcomes would go a long way to improving medication adherence and patient outcomes.

Performance-based reimbursements, global service payments, and Accountable Care Organizations are all being discussed as ways to reform our payment and delivery system. Performance-based reimbursements would reward providers for helping patients achieve measurable, positive health outcomes. Global service payments would give providers a lump sum to manage a group of patients as they see fit – with the expectation that the payment is used to achieve the best possible outcomes. Accountable Care Organizations are collaboratives within which a hospital, primary care physicians, specialists and other providers accept shared responsibility for the cost and quality of the care provided to a group of patients.

With the ultimate goal of better patient outcomes, all three of these models could provide the needed incentives and resources for providers to invest in interventions that would help them monitor and improve adherence.  For example:

• Providers would have incentives to review and act on patient adherence data such as claims or pharmacy records, which could be used to identify non-adherent patients so that providers could intervene as appropriate.

• Physician practices would have additional resources needed to invest in longer visits with patients. Moving beyond the 15 minute model would allow physicians and other providers within the practice to engage in activities such as medication reconciliation, motivational interviewing and patient education.

• Payment reform to promote adherence and improved health outcomes could be extended directly to non-physicians as well.  We have an enormously valuable and untapped resource in our community pharmacists, and yet they are not reimbursed for patient medication counseling beyond limited medication therapy management programs.  Creating the appropriate reimbursement incentives could encourage community pharmacists to provide additional services and to work collaboratively with physician practices around medication reconciliation and adherence.

• Clinical pharmacists could be hired by physicians to assist their practices with medication related needs. Given the skill set that clinical pharmacists have in pharmacology and medication use, they could be utilized on a regular basis to care for patients struggling with complex medication regimens.

• Providers would have incentives to better coordinate patient care, particularly during times of care transitions such as hospitalizations. Under an Accountable Care Organization model, providers would be accountable for ensuring that medication lists are reconciled before patients leave the hospital, that patients understand post-discharge care instructions and that the appropriate follow-up is made to ensure that patients have filled their prescriptions and are educated about taking their medicines appropriately.

Payment reform is an essential first step in taking a system-wide approach to medication adherence. It is critical that we align incentives to focus on and reward better patient outcomes.  Without the appropriate payment incentives, it will be exceedingly difficult, if not impossible, for our health care providers to make any meaningful dent in the widespread problem of poor adherence.

Related posts:

1. A healthcare and medication organizer that could help medication adherence
2. Medication Adherence Requires a Team-based Approach
3. Improving Adherence with the Help of Pharmacies

The following guest post on the subject of

If the Disruptive Women series on medication adherence has shown anything, it’s that there is a nearly endless number of potential solutions to address the nearly endless number of reasons patients and their prescribed medications do not “stick.”. Over decades of practice in cardiology, I had a first hand view of the challenges patients face in adherence – inability to afford the prescription to incomplete understanding of a med’s value or benefit to overestimating the risk to unclear directions or complex instructions on how and when to take the drugs..

Now, in a staff role at the American College of Cardiology, I join others in the search for solutions to help other cardiologists and health care professionals improve adherence to complicated medication regimens. Successful medication adherence is not a failure on the part of the patient to take their medication, but rather a failure on the part of the health system – including patients, their providers, the reimbursement structure, the insurance companies, etc. – to make it easy and worthwhile for the patient to take his or her medicines..

In July a group of key stakeholders met to brainstorm potential solutions to improve medication adherence. The sponsoring groups represented the major players in improving medication adherence – the drug stores (National Association of Chain Drug Stores), the drugs (PhRMA, GlaxoSmithKline), the patient (National Consumers League) and the ACC representing the physician joined the coalition this fall. In addition to these groups, there were about 40 leaders in the field who shared their wisdom. With the knowledge gained from the discussion in July and in the context of the proposals being considered by Congress, the group is formally recommending five solutions that will improve medication adherence:

Quality Improvement Strategies. Many of the Congressional proposals being considered focus on how to improve quality in the health care system. It is imperative that any national quality improvement effort explicitly acknowledge and address medication adherence as one of its aims.

Care Coordination. Many of the proposals being discussed also include methods to improve care coordination. To improve medication adherence, any care coordination plan must include one often overlooked person – the patient. By having open discussions with our patients about the importance and rationale of each medication prescribed and allowing patients to ask questions and give feedback, we increase the chances of desired outcomes all around. .

Use of Health Information Technology (IT). With the passage of the health IT provisions in the stimulus bill, the number of offices and hospitals using technology is likely to increase. We must demand that health IT have the ability to improve the flow of medication information between patients and their physicians and identify gaps in patients’ medication use. A crucial component of that, as mentioned by Julie Murchinson in her post, will be using technology to engage patients in the management of their medications.

Patient and Provider Education and Engagement. The fourth recommendation addresses physicians helping patients to help themselves. As patients understand their conditions and the benefit of meds in managing those conditions, adherence increases. It’s up to providers to make this happen. If they don’t understand, there’s no hope that 6 months, a year, two years out they’ll still be taking the medications they need to live active and healthy lives.

Health Services Research. More research on medication adherence is needed to understand what we know and what we only think we know. By studying under-researched areas in medication adherence, we can begin to close the research gaps and better understand what methods work best for improving adherence and improving clinical outcomes.

Successful patient medication adherence is not just about the patient taking his or her medication – it’s about the health system working together to allow the conditions to exist to enable the patient to take his or her medication. The time has never been better to implement the solutions explored during this series.

Related posts:

1. National Consumers League – National Medication Adherence Campaign
2. Improving Adherence with the Help of Pharmacies
3. Payment Reform: A System-wide Solution to Medication Adherence

The following guest post on the subject of drug adherence is written by Julie Murchinson, Founder, Health 2.0 Accelerator and Managing Director with Manatt Health Solutions.

The tools are coming! The tools are coming! For a while now, tools to manage drug adherence have been developed, many designed to enable the patient to self-manage in the context of and in collaboration with the health care system from a specifically designed device or heavy application. Patient adoption, however, has been slow and the vision for self-management of drug adherence not yet reality. But recently from the budding Health 2.0 space, we are seeing tools built on more accessible web and mobile platforms that allow patients to manage when and where they want to with their mobile device (e.g. iPhone, Blackberry, cell phone). So, in much the same way many people’s lives have changed as a result of being able to use Facebook or Twitter, or read the Washington Post from their phones on the bus or out at lunch, patients who have previously required proximity to their home device or desktop to log medications taken can now not only track on their phone what they take from their pill box, but also take advantage of glow cap or smart label technologies that can technically interact with a phone-based mobile application.

It was one thing when the Brazilian government was sending text messages to remind women to take their birth control pills (which, by the way, has been highly effective), but we are in a new age of both passive and active patient engagement with mobile platforms. There are iPhone accessible apps like Polka and TheCarrot.com that enable patients to schedule and track their medications taken along with a number of other health topics including sleep, exercise and mood, among others. Medic8Manager provides an iPhone solution that goes a few steps deeper on drug adherence for managing scheduled medications with reminder functionality, refill tracking, missed dose alerts, as-needed meds and discontinued medications. A similar application in development from Informediq even uses the tagline, “enabling healthcare anywhere”. While some products are typically used solely by patients without involvement required from a physician or other caregiver, we are starting to see more user-friendly tools that originate from the physician-patient care process, while allowing for more consumer-friendly adherence tracking, a good example of which we are seeing from the new AdhereTx product. The next step in innovation can be seen from eMedMobile which facilitates a phone working with “smart labels” on prescription medication bottles that store drug data and send alerts to caregivers when a drug is missed.

What mobile drug adherence applications cannot do is change the character of the person using their phone for this purpose.

• Will we choose to tweet about our day, check the latest scores AND log our our Lipitor on our phone?
• Will we enter all of the drugs we take and their respective schedules into one of these applications or will we demand that that information be automatically downloaded from our doctor or pharmacy as part of the electronic prescribing process?
• Will we be more inclined to use these tools if we are doing so in tight coordination with our physician?

A growing number of technology companies are betting on the fact that mobility will enable flexibility and meet the patient where they are, providing enough value to help them change their drug adherence behavior to some extent. We are even seeing some products go the next level to provide incentives to patients like Health Honors, which uses a points-reward system that can be used on health-related awards like fitness equipment, co-payment discounts and other financial benefits. We, the broad “we”, are hopeful if not excited about the prospects for these tools to have a significant impact on adherence once and for all. Although time will tell, innovation in this area is both notable and promising.

Related posts:

1. Got Meds: Drug Adherence for Young People with Chronic Medical Conditions
2. Drug Adherence Throwdown: Analyzing America’s Other Drug Problem
3. Improving Medication Adherence with a Cell Phone

Poor medication adherence affects all of us in healthcare — it’s a problem that our entire industry is trying to tackle. By many estimates, more than 50% of patients aren’t taking their medications as prescribed. And that’s a real problem: it’s adding $177 billion in additional healthcare costs and contributing to sicker patients. Reports associate lack of adherence with 10% of hospital visits and 40% of nursing home admissions.

At McKesson, we’re trying a new approach. We’ve partnered with pharmaceutical manufacturers to sponsor programs that get community pharmacists involved in promoting medication adherence. Independent and small-chain pharmacies, including McKesson’s chain of Health Mart pharmacies, have a reputation for building strong relationships with their customers and delivering excellent service. By getting pharmacists to spend time counseling patients about their medications, we’re helping patients become more informed, more confident, and more motivated to adhere to their medication regimens.

In one of our first programs, the Pharmacy Intervention Program, we’ve trained hundreds of pharmacies in motivational interviewing and other key health behavior change techniques — asking patients open-ended questions and having a true discussion about the patient’s knowledge, feelings, beliefs, goals and expectations. This patient-centered approach to counseling helps pharmacists be as effective as possible in providing education and support to patients.

Here’s how it works: when patients come to pick up their prescription for one of the sponsored medications, the pharmacy’s computer system alerts the pharmacist or pharmacy technician that the prescription is eligible for counseling. Before the patient leaves the pharmacy, a pharmacist begins a conversation with him or her about the medication and provides the patient with literature to take home. Pharmacists are reimbursed financially for the 5 minute counseling time — something they ordinarily do for free — further encouraging them to take the time to promote patient adherence.

We’re already seeing incredible results from the program. In our pilot program this summer for two products, our pharmacists achieved a 24% increase in adherence (the number of patients returning for refills) for a smoking cessation therapy medication, and an average 38 % increase in adherence rates for a COPD medication. These are mind-blowing results, and the manufacturers with whom we’re working have taken notice. We’re all excited about the impact of this program and the results that community pharmacies may be able to achieve in driving medication adherence.

So many times in our healthcare system, a patient’s different care providers work in isolation to promote better outcomes. But programs like the one we’ve introduced at McKesson suggest that more collaboration and coordination — reinforcing common messages about conditions and medications from the physician to the pharmacy counter — can make a huge difference. We’re also seeing the real difference that strong relationships and quality, patient-centered discussions can have on a patient’s understanding of and loyalty to a therapy. These are things to keep in mind as we ponder how to address this very large issue our healthcare system faces with medication adherence.

Related posts:

1. A healthcare and medication organizer that could help medication adherence
2. Payment Reform: A System-wide Solution to Medication Adherence
3. Improving Medication Adherence with a Cell Phone

I was in West Africa to make a documentary on the impact of new vaccines and pneumonia prevention efforts in developing countries.  After years working at a pharmaceutical company where I was fortunate enough to launch these new vaccines, I realized that something was missing.  I was surprised to learn that the percentage of deaths due to pneumonia was so high (almost 1/5 of all post neonatal deaths).  Ninety-five percent of these deaths occur outside of the US, Europe and other industrialized countries, yet it was in the developed world where we did most of our business.  We often forget about children in the developing world.  We see pictures of desperate, hungry children and rationalize well, if I don’t do this one thing, something else will kill them anyway.  But all you need to do is travel to one of these countries to realize that children are the same all over the world.  You forget that they are still grappling with some of the diseases that have long been out of our minds for children in our country.

Pneumonia? Who would have thought that this is such a large problem for young children?  In fact, it is the illness that leads to the most deaths worldwide – over 2 million young lives lost every year, a child every 15 seconds.   We have access to pneumonia vaccines and antibiotics to treat – child deaths due to pneumonia are relatively rare in US and Europe.  These deaths unfortunately occur all too often in the developing world.

While at the hospital in Ibadan, I spoke with mothers waiting outside the vaccine clinic. Many of them hadn’t heard of pneumonia, although one mother had lost her daughter to the disease, or as she described it to me, a “cold in her bones.” What was so heartbreaking about her story was how easily it could have been prevented. For only $20 USD, her daughter could have been fully immunized against pneumonia with Hib and Pneumococcal vaccines, similar to those given to our children in the US, and while non-vaccine-preventable strains exist, an appropriate course of antibiotic treatment costs less than $1.00.

The mothers I met that day are not the only ones unfamiliar with pneumonia. Many global health leaders and donors are unaware of the magnitude of this disease or the full range of effective tools available to protect children. In an effort to overcome this legacy of neglect, global health advocates around the globe are banding together today to commemorate the first ever World Pneumonia Day. Our shared goal is to bring greater attention to this disease and to motivate policymakers and donors to control child pneumonia through the protection, prevention, and treatment strategies recommended by the Global Action Plan for the Prevention and Control of Pneumonia (GAPP).

We often see images of sick children losing the battle against poverty and disease, but I think one of the reasons I like this photo so much is that it reminds me of the joy a child’s recovery can bring. Pneumonia is a common and deadly disease, but it is stoppable. World Pneumonia Day is an important first step in making the leading killer of children a global health priority.

If you’d like to learn more about child pneumonia or what you can do to support World Pneumonia Day, please visit our website.

Related posts:

1. Can 30 seconds of your time change a child’s life?
2. Saving Money while Saving Lives: The Economic Argument for Childhood Vaccination
3. If he could speak, what would he tell our leaders? Tell them for him.

The following guest post on the subject of drug adherence is written by Joyce A. Cramer. Joyce is Associate Research Scientist at Yale University School of Medicine as well as President of Epilepsy Therapy Project, a 501-c-3 organization accelerating new therapies for people with epilepsy.

“Drugs don’t work in people who don’t take them” said former Surgeon General C. Everett Koop. While performing research on this topic since the 1980s, I have been continually surprised that the results are uniform: People take, on average, three-fourths of medication as prescribed¹. This has held true across many diseases and types of medications. There seems to be no consequence so severe that everyone with that disorder takes all doses (e.g., organ transplantation, epilepsy, asthma, etc.).

One of the first studies I published included extensive neuropsychological testing. It showed that not taking all doses does NOT relate to intelligence². There are numerous studies showing the ineffectiveness of health education. Many people get good scores on knowledge linking disease control/management with medication, but do not carry-through by taking all doses.

Interviewing lots of people led me to realize that the main reason is forgetfulness (on a daily basis or during a disrupted schedule). I then developed a simple system to teach people skills on HOW to take their medication. It consists of asking the person (a) what is the best time of day to remember a dose, and (b) what daily activity can you link this to as a reminder³? Typical responses are the best time is in the morning (ask to set a range of time, i.e., 7-8 am), and link it to making coffee, taking the dog for a walk, etc. Only the person who is taking the medication can select the most convenient time and the personalized cue. The “Cramer Method” does work, as demonstrated in several studies.

The system works only when the person has accepted the diagnosis and need for treatment.

On the medical side, I teach doctors to ask whether the person is willing to take the medicine, then proceed to teach them how to set time and personalized cues. Explain that if the first cue does not work well, select another cue.

I often hear that someone had an exacerbation of symptoms after missing doses or discontinuing treatment. Sometimes the same person has multiple episodes until the personal lesion is learned. That’s human nature. I do not look at medication adherence as a complex behavior mediated by psychological issues. Much of it is a straightforward personal commitment based on choice, coupled with acceptable tactics to do what is being asked. Diseases differ in requirements, ranging from one tablet daily for hypertension to diet, exercise and oral or insulin treatments for diabetes. People differ in their willingness to perform health-related tasks – changing over time based on other priorities in their lives⁴. Yes, people make choices for which they are responsible, both actions and inactions. The doctor can’t make it happen without a willing partner.

1. Claxton & Cramer. Medication compliance: the importance of the dosing regimen. Clin Therapeutics 2001; 23: 1296-1310.
2. Cramer et al. How often is medication taken as prescribed ? A novel assessment technique. JAMA 1989; 261:3273-3277.
3. Cramer & Rosenheck. Enhancing medication compliance for people with serious mental illness. J Nervous Mental Dis, 1999; 187: 52-54.
4. Cramer et al. Compliance declines between clinic visits. Archives of Internal Medicine, 1990; 150:1377-1378.

Related posts:

1. Just a Spoonful of Sugar: How Healthy Gaming Can Support Drug Adherence
2. Got Meds: Drug Adherence for Young People with Chronic Medical Conditions
3. Medication Adherence Requires a Team-based Approach

Imagine going to a grocery store where none of the items had prices, and when you got to the checkout the cashier couldn’t tell you your total. Instead, he offered to mail you a bill for an unknown amount.

Although that sounds ridiculous, it’s exactly how our nation’s health care system often operates, and Regence BlueCross BlueShield has created a short (45 second) video highlighting the absurdity of that very situation.

The video is part of Regence’s What’s the Real Cost campaign designed to challenge people’s thinking about how far reform needs to go. It also explores the way choices consumers make each day can impact health care costs. Be sure to check out the five questions consumers can ask to change health care.

Related posts:

1. Multimedia Roundup: Health Care Policy
2. March Man-of-the Month: Dr. Ted Eytan Interviews Holly Potter, Kaiser Permanente’s VP for Public Relations, on the Use of Social Media in Health Care

The following post was written by Elaine R. Rubin, PhD, who is Vice President for Policy and Program of the Association of Academic Health Centers. She is a health policy analyst with a focus on health care organizations, infrastructure, regulatory, and research issues and publications on a variety of health topics. The post first appeared on HealthPROSE, the blog of the Association of Academic Health Centers.

I heard today that congressional staffers are “punch drunk” from logging in so many hours working on health reform.  I am not comforted by that thought given they are trying to  write one of the most significant pieces of legislation in decades.  I am  wary of the urgent rush to produce something—good or bad—to show that Congress is not twiddling its thumbs.  Does the Congress really have all the facts?  Or are they also developing legislation based on minimal or biased information, evidence, experience, or truth?

I would point to an opinion piece in the LA Times by Dr. Philip Pizzo, dean of the school of medicine of Stanford University and chairman of the board of the Association of Academic Health Centers, where he wrote, “Undertaking such an important shift in how we deliver healthcare requires a robust national debate.” With the members of Congress getting ready to say yea or nay on health reform,  we still have not had sufficient debate from all sides.  The nation has heard too much from those leaders who, as Dr. Pizzo says, “choose to rely on fear instead of facts to make their case.”

Before the votes get counted, we need to hear from the patients who really use and have experience with the health care system as it exists today.  We need to hear more from the leaders of the nation’s academic health centers–some of the most experienced experts on health care in the nation.  Most are physicians who not only have practiced medicine for decades but also have had distinguished careers in academe (and sometimes government).  Most of all, they know what it means to lead and operate an institution, without which our communities–and the health system–cannot function.

These leaders, who also include nonphysicians, can tell us about patient care, the impact of health on communities, the health and economic consequences of  having no insurance,  and the problems with the current reimbursement system.  They can tell us what it is like to run health professions schools–from medicine to allied health,   major departments at a children’s or other teaching hospital, or an entire teaching hospital or  health system–and what facilitates or impedes care delivery.

Academic health center leaders are the people at ground zero, making sure that the nation can provide health professions education, biomedical research, and patient care.  They are sustaining the infrastructure that may determine the nation’s future.  Congress should be listening to these voices of experience and reason.

Academic health center leaders know what it takes to provide patient care and sustain a health system in challenging economic times. They not only know the problems but also how to resolve them.  Academic health center  leaders for example, will tell the Congress why we need to establish a permanent workforce planning entity or board so we can resolve primary care shortages and rural health problems–and  ensure the nation has a health workforce for the future.

Congressional staffers—stop running on empty and get MORE input, advice, and recommendations from the academic health center community.

Related posts:

1. The NHMA Forum on Health Care Reform offers an opportunity to impact health reform legislation
2. What Our Founding Fathers Can Teach Today’s Congress About Health Reform (Hint: Compromise)
3. Family Health & Birth Center: A Model for Families

The following guest post comes from Judy Strachan. Judy is a member of the Society of Actuaries and a Specialist Leader of Human Capital Advisory Services Total Rewards at Deloitte Consulting LLP.

“Ask yourself this: Other than medical (or dental) insurance, is there any insurance product on which you expect to make a claim every year? Undoubtedly, the answer will be, “Of course not.”

This is a thought provoking quote from an article by actuary Jim Mange, entitled Prepaid Medical Care And Medical Insurance. This article is part of a series of essays on our health care system which are available on Society of Actuaries’ Web site: http://www.soa.org/library/essays/health-essay-2009-toc.aspx. Each of these essays presents a different perspective on the problems with our current system for providing and paying for medical coverage.

It comes as no surprise, the current health care system is not working for any of the parties in the system; employers, medical providers, health plans and health insurance companies and especially not for the consumer.  More clarity is needed to help solidify a new path for healthcare reform.

For the consumer, the current billing practices of providers and payment practices of insurance companies often result in the highest charges being applied to the individuals least able to pay, the uninsured. Even for the insured, understanding the plan benefits, the provider bills and the claim payment process is a major challenge! Personally  – even though I consult with health plans and health insurance companies daily and understand the claim process and the terminology, I still find the process challenging.

I have the misfortune to be part of the population least satisfied with our current health care system, individuals with chronic health conditions that require frequent medical care.  For this group, our lives depend the most on the system working.  Each medical service requires me to sort through multiple pieces of paper in an attempt to understand what was paid on my benefit claim, why that particular amount was paid and how much of the remainder is my responsibility versus amounts the service provider is expected to contractually write off.  Because my medical providers seem to be equally confused, I am frequently billed for things my health plan says is not my responsibility. For example, correcting the claim payment, correcting the bill and finally paying my medical bills often seems to be an exercise in frustration and futility.

Medical providers, especially many public and community not-for-profit hospitals are closing or struggling to survive. Many of the health plans, for which I consult, are operating on paper thin margins. Grocery stores have higher profit margins as a percent of revenue than some of my clients. Employers are struggling to maintain benefit plans for their employees in the face of double digit annual increases in their costs.

As Mange points out in his SOA essay, the incentives of the current health system are rewarding bad behavior:

• Because the benefits are paid by a third party for most of us, we as consumers have little incentive to control costs and very little access to information that would help us understand in advance the cost of the services and whether the services are really necessary or even in our best interest. The book Overtreated by  Shannon Brownlee provides a chilling perspective on the impact of excessive medical care on our health and well being.
• Because reimbursements to providers are based on the services provided, medical care providers have an incentive to prescribe more rather than fewer procedures for their patients.
• Health plan administrator’s costs are high because for each claim they receive, even the smallest ones, they must answer a series of difficult questions: is this patient covered by our plan, are these services covered by the plan, were these services medically necessary and appropriate for the individual, were the charges reasonable.

So where do we go from here? Mange’s essay highlights some steps I believe are key in moving forward.

• Educate policymakers and the public that medical insurance should be like other insurance, frequently bought and rarely used.
• Effect legal and regulatory changes that differentiate between prepaid medical care (i.e. payment for routine annual doctor’s visits and medical tests) and medical insurance.
• Require that costs be transparent.
• Require that insurance reimbursements be based on outcomes, adjusted as appropriate for complications.
• Encourage, but do not mandate the purchase of prepaid medical care.

Related posts:

1. More Responsible Patients=More Accountable Providers
2. Life in the Trenches of the Health Insurance Business
3. Blog Roundup: President Obama's budget plan for health care reform

Stay Tuned: We will be creating and widely distributing a CER e-book.

The HHS Federal Coordinating Council for CER research posted its report to Congress and the President on Monday describing federal activities on CER. Another report with actual priority suggestions is due to Congress by the end of July. On Tuesday, the Institute of Medicine released their sage advice about the top 100 priorities as well as a report on CER. I found one line, in particular, of extreme importance from the report to Congress:

“National Institutes of Health (NIH) diabetes prevention trial demonstrated that lifestyle change was superior to metformin and placebo in preventing onset of type 2 diabetes.”

Although an extremely complex and closely watched effort across the private sector, this line is the crux of the issue of success for such an endeavor. Of the entire IOM report, I found the following meaningful:

“Compare the effectiveness of traditional behavioral interventions versus economic incentives in motivating behavior changes (e.g., weight loss, smoking cessation, avoiding alcohol and substance abuse) in children and adults.”

How do we know how much the patient – their genomic and proteomic make-up, their lifestyle choices, their home environment, the food they eat, the exercise they do, the sangria they drank last night, the choices they make, the levers that influence their behavior – impacts our ability to understand the health outcomes and economic value of clinical interventions such as medications, procedures or clinical delivery system strategies as proposed by comparative effectiveness research? The fact that CER is now being referred to as patient-centered health research or patient-centered outcomes research is definitely half the battle and we are thrilled to see that, but how do we really put our money where our mouth is to ensure that the patient is, in-fact, informing these efforts and the research knowledge base through both their own actions as well as how they inform interactions with the health care delivery system?

A key finding from the Robert Wood Johnson Foundation’s Project HealthDesign work on personal health records was, “collecting ODL (observations of daily living) data through PHRs gives both clinicians and patients insights that are unattainable in records that capture information only from clinical encounters.” How do ODLs play a role in comparative effectiveness research? Well, tracking ODLs can help individuals better understand their own health and well-being status (i.e. pain, mood, sleep patterns, etc.) and/or disease issues. This is, arguably, helpful context to understand who the patient is and how they live their lives and take care of themselves between clinical visits. Put in the right context, individuals can actually visualize trends and relationships in their health data not previously available to them. This alone is helpful, but not likely to impact CER until the information makes its way to a clinician and the health care delivery system. Hence, something about ODL tracking may and should cause individuals to use this information as a “patient” with their clinician. Although this rarely happens today, this phenomenon is on the rise and is playing a critical role with both the clinician in terms of painting a broader picture of the patient sitting in front of them as well as with the patient who is, for the first time in some cases, able to link how they are feeling on multiple levels with a particular experience or clinical indication. This interaction is empowering for both clinician and patient. This interaction has potential repercussions for how the clinician might treat the patient with medical therapies, drugs or other interventions and certainly for how the patient might view their health responsibilities between clinical visits.

So, what does all of this have to do with comparative effectiveness?

Well, if the patient’s tracking can influence the provider’s clinical decision which influences the comparative effectiveness tracking currently being designed by the federal government, doesn’t it make sense to include the patient and enable a technical and operational understanding of their health and health care experiences, decision-making and participation along the way? How can one imagine a clean view of comparative effectiveness without meeting the patient or individual where they are in order to understand how they are potentially influencing comparative effectiveness in their own, personalized way?

Related posts:

1. Disruptive Women’s Comparative Effectiveness Research eBook Is Available
2. Comparing Comparative Effectiveness: One Step To Saving Costs
3. Comparative Effectiveness Research Smack Down: June 22nd Kicks Off A Policy Challenge through the Eyes of Disruptive Women in Health Care

There are five zones around the world where people tend to live the longest, healthiest lives. These are called the Blue Zones. They include Sardinia, Italy; Northern Costa Rica; Okinawa, Japan; Loma Linda, CA; and a remote Greek island. World renowned explorer and National Geographic writer, Dan Buettner believes that “we know there’s a recipe for longevity and that 75 percent is related to lifestyle, and we’re figuring it out.” Below is a list of 25 amazing health discoveries, lifestyles, and simple changes that have come from this region and can be easily done in your own home.

1. Have a purpose. By figuring out what gets you out of bed, you can achieve one of the most important keys to longevity. By doing this, your life expectancy is 70 percent higher than that of someone who doesn’t know. Keeping a sense of purpose and goals for each day leads to longer, healthier lives for both men and women.

2. Stop eating when your stomach is 80 percent full. A recent study on mice determined that those who ate less calories lived longer, despite other lifestyle changes. Those who eat less can even burn more calories than those who eat more and exercise. The Okinawans do so regularly and maintain one of the highest life expectancies on the planet.

3. Build your own cultural of longevity. Make sure as you get older to surround yourselves with the right people. It is essential that you have things in common, and that they have a sense of respect for their elders.

4. Incorporate work, religion, and volunteering in your everyday life. A job gives you purpose to your day, so try to hold onto it as long as you can. Making spiritual connections is also important for inner peace, as well as companionship. Those looking to branch out by volunteering can use a website that places volunteers by area and interest, such as Volunteer Match.

5. Stay in school. Research by James Smith, a health economist at the RAND Corporation, suggests that education plays a key role in longevity. Dr. Smith, along with other researchers, determined that a few extra years of school, along with continued education into adulthood, improves both mental and physical health. Seniors are also less likely to be diagnosed with dementia if they have higher IQs, according to this study.

6. Don’t worry, be happy. Research by the University of California at San Diego, discovered that optimism and the ability to cope were the most important factor in happiness and aging. Another study concluded that the happiest Americans are the elderly. Those who found the most joy in their lives were those who were still working into their sixties and seventies.

7. Exercise. Don’t have time to go to the gym? Neither did this Greek man, who rode his bicycle everyday until he was 102. Physical activity can be found all around us, whether it is cleaning your home, going for a walk, or playing with children.

8. Eliminate stress. Stress can lead to bodily inflammation and may contribute to hypertension. From exercise to meditation, stress can be combated in many ways. A list of 20 easy ways to eliminate stress can be found on Zen Habits.

9. Quit smoking. Rarely found in Blue Zones, cigarettes have been proven to increase the risk for heart disease, cancer, and shorter life span. Stopping this habit is difficult due to the nicotine withdrawal, but smokers can immediately feel a difference in their health once they’ve stopped. The American Cancer Society has a Do’s and Don’ts Guide for Quitting Smoking, along with QuitLines and other support.

10. Stay away from pollution. There are many things an individual can do to eliminate pollution from their homes and offices. By doing simple things such as getting rid of leaf blowers and keeping up with ozone alerts, you can avoid a great deal of pollution. A list of 50 ways to help fight pollution can be found here.

11. The Okinawa Diet: With a life expectancy of 86 years old for females and 78 years old for males, this diet is worth a look. For a small fee on this site, you can join the hundreds of Americans who are choosing this diet for longevity. By increasing fruits and vegetables, and reducing meat and processed foods, you can eat as the Okinawans do.

12. Eat more olive oil. This oil has one of the highest contents of monounsaturated fat, which is useful for cholesterol maintenance and prevention of heart disease. It has also been shown to combat digestive troubles, colon cancer, and other ailments. An individual’s experiences on the olive oil diet, along with various recipes, can be found here.

13. Red wine. These wines are rich in polyphenols, antioxidants that help slow the aging process. Sardinian canonau wine has the world’s highest levels of antioxidants. A list of the benefits of red wine can be found here.

14. The Klotho Gene: This gene is named for the Greek Fate purported to spin the thread of life and is reported to contribute to the life expectancy in humans, according to a team led by Johns Hopkins scientists. Although the exact influence of this gene is not known, Hal Dietz, Ph.D., a Howard Hughes Medical Institute investigator, believes it has a clear association with life expectancy. But until the research is complete, there is no benefit to knowing the status of one’s Klotho gene.

15. LRP5 Gene: The role of this gene is mostly to determine bone mass density. Variations of this gene can cause osteoporosis, yet those individuals who maintain a healthy bone density tend to live longer, healthier lives. Although research is still in the early stages, discoveries on this gene could prove useful in determining longevity.

16. The 40 Year Makeover: Stewart Burton smoked three packs of cigarettes a day, drank nine beers a night, and followed with several shots of liquor and various drugs. Although he was only 25, his actual age came in around the sixties. By having a doctor move into his home, Stewart learned how to eliminate his destructive lifestyle and return to his actual age.

17. Keep your family close. Most people in Blue Zones live not only near their nuclear families, but extended ones as well. This provides a vital and constant connection to those who know you best and have shared your experiences for a lifetime.

18. Tiste. This is a drink made from rice and cocoa in Nicoya, Costa Rica. It can also be made with corn and is distinct for its red color and chocolaty flavor. Two home recipes for tiste can be found here.

19. Mugwort Sake: Also known as Artemisia vulgaris, mugwort is a tall growing plant that can be found all over the world. It is made into a sake by the people of Okinawa and thought to be a key ingredient in their longevity. A recipe for Mugwort tea can be found here.

20. Have more fun. Quite possibly the easiest to do, fun can be found in various forms. You can play games or sports with others, have sex for the release of aggression and creation of intimacy, and even alcohol in moderation is recommended by the Blue Zone lifestyle.

21. Grow a garden. Studies show that growing a garden can improve your health, save you money, and bring you closer with family members who work on it. It also provides a set time for the day when you can connect with nature and relax. A simple and easy guide to growing a garden in your backyard can be found here.

22. Get a tan. With Vitamin D deficiency on the rise, there is no cheaper or quicker way to get a dose. By spending a small amount of time in the sun, not tanning bed, doing light activity, you can live longer just as the elders in the Blue Zone do.

23. Workout right. Joints such as the hips are like tires and once you wear out the tread, the joint needs to be replaced. By trading exercises like jogging with pilates or yoga, you can still get the benefits of a natural workout without the stress to the body. Articles on how to accomplish this can be found here.

24. Do holistic exercises. By practicing natural movement, such as yoga, tai chi, and even meditation, you can combat things such as heart disease, mental illness, and even stress. Elders in the Blue Zones habitually perform some type of natural movement on a daily basis, and it is usually done outside. The site, eHow, has an array of videos on how to do meditation, along with yoga and tai chi.

25. Take the Blue Zone Vitality Compass Quiz. After a quick registration at this site, you will be asked a series of questions on your current lifestyle. You will then get answers for your overall life expectancy, healthy life expectancy, biological age, and your number in Blue Zone years.

Do you have to move to a Blue Zone to live a long life? The short answer is no. These inhabitants act as examples to live by, making it entirely possible to create your own Blue Zone with these 25 discoveries in your own home or community.

No related posts.

Heart disease is the number one killer of women. The problem is, women have different symptoms then men — so they often don’t realize they’re having a heart attack. The Queen of Hearts Foundation is co-hosting a women’s wellness seminar in Atlanta June 2 and 3 at the Crowne Plaza Hotel Atlanta Perimeter At Ravinia – (Address is: 4355 Ashford Dunwoody Rd NE, Atlanta – (888) 444-0401)

If you’re in Atlanta, the cost is only $10 — and it could save your life.

Queen of Hearts co-founders, Katy Atterbery and Carmen Perez, talked to Disruptive Women’s Wendy Grossman.

DW: Did you know each other before you started the foundation?

KA: We met while volunteering on a project regarding women and heart here in Atlanta in 2004. We formed the foundation in May 2005, and got our 501C3 status in July 2008. Carmen is the daughter of a man who has had open-heart surgery. And I, of course, am a multiple heart attack survivor.

DW: I read that you had several heart attacks in a week.

K.A.: I had three heart attacks in a five-day period.

DW: And you didn’t know you were having a heart attack?

K.A.: I had no idea. I had symptoms for six to eight months and ignored them. I was busy doing other things. I had a burning sensation in the pit of my stomach, a pain in the side of my neck, and a pain in the shoulder blade. Women symptomize differently than men (visit qohf.org and click on symptoms).

I never had a pain in my chest; I never had a numb left arm. I felt lousy, my skin tone was gray, I saw dots in front of my eyes. When I had the first heart attack, on Nov. 13, 1997 (a week after my 54th birthday) I was misdiagnosed as having an anxiety attack in the ER and they sent me home.

DW: Wow.

KA: I drove myself — which was a really stupid thing to do — but I didn’t know what was wrong. The second heart attack I had while co-chairing a fundraiser at my son’s school that Sunday night (Nov. 16.)

I wouldn’t let my husband take me back to the hospital because they told me nothing was wrong. I saw my internist that Monday who told me that I was over 50 and probably had acid reflux. He gave me a prescription for an upper GI series and said he’d call in a couple days. That night, I suffered a major myocardial infarction — which is a heart attack. I was throwing up and in excruciating pain.

My husband carried me back to the ER. Our son, Christopher, was a senior in high school and he had the flu. He was sick in bed and my husband — who traveled for business every week, by God’s gift was home that Monday. If he hadn’t been home, my son would have come upstairs that morning and found me dead. Because I never would have got to a phone, and he never would have heard a cry for help.

At the hospital, I lost consciousness and lay for over four hours with them insisting it was my gallbladder, before they called a cardiologist.

It wasn’t until the cardiologist did the cardiac blood enzyme test they knew I had a heart attack. (That is a blood test that detects the presents of certain enzymes your heart produces when under attack.) I was unconscious. They did a heart catheterization and a angioplasty and put a stent in my lower and anterior descending artery. The interesting thing is, 11 years ago when this happened, stents were brand new. So I have a surgical steel coil that is now embedded in the wall of my artery.

DW: Wow.

KA: But 11 ½ years ago, they didn’t know the lifespan of the stent, the efficacy of the steint –whether your heart was going to reject it or not. It was brand new. I spent the next four days in cardiac intensive care and lived to tell the story. Most women over the age of 50 that have heart attacks don’t live to talk about them.

If I had been a man 40 years of age, they would have admitted me without question. They would have found the blockage, they would have put in a stent, and 24 hours later I would have gone home. And instead, five days later, I was almost dead.

The Susan G. Komen Foundation has done a remarkable job in marketing breast cancer, about 38,000 women died last year from breast cancer — an estimated 600,000 women died of heart attacks.

DW: Women’s heart health is big issue.

KA: It’s the number one killer of women in this country. Number one.

DW: Because so many women don’t know it’s happening.

KA: What you hear about and what you see about are risk factors. Blood pressure levels, good cholesterol, bad cholesterol. If you have a heart attack and your lying on the floor and you don’t know what’s wrong with you, it doesn’t matter if you have risk factors or not. If you don’t know what your symptoms are, you’re dead.

DW: So Carmen have you had heart issues? Or just your dad?

CP: Just my father. What Katy and I are doing is ensuring that I never have one. My father had gone through this episode — which had been the longest day of all of our lives. My father had a healthy heart, his was stress-induced. He had a quadruple bypass. My sisters and I are living a heart healthier lifestyle.

DW: So what would be a heart healthier lifestyle?

CP: Eating right, exercising, monitoring my lifestyle choices and habits.

DW: Like what?

CP: Not smoking. Watching my cocktail intake.

KA: She watches her cocktail intake from her glass to her mouth — just kidding.

DW: We are red wine drinkers.

KA: An occasional Cosmo doesn’t hurt.

DW: How else are you changing your diet?

CP: Less red meat, more vegetables, more fruits, tons of water.

KA: And eliminating fried foods.

DW: But I love fried foods. Everything’s better fried.

CP: A grilled chicken salad is just as good as that fried one. If you can get your body in tune, in a healthy place — if you treat yourself once in a while to that fried it won’t hurt you. If you feel you deserve a treat on occasion, you can treat yourself and the ramifications won’t be so overwhelming later.

KA: The whole purpose of the Queen of Hearts foundation is to develop awareness, education and information regarding women and their heart health.

DW: How are you doing that?

KA: You can go to our website, www.qohf.org. There is a community forum on the web site where women can come online and talk to other women about their experiences and their heart health. We are not a medical web site, we are a website that provides information that women can understand. We’re not doctors.

CP: In addition to our own website, we’re participating in a lot of online media and social networking. We have a Facebook page, we’re on Linkedin, and we’ve just begun to Twitter. The twittering component, I’m going to post our forum topics into twitter to drive the conversation and get feedback from the community. Our main focus in spreading awareness and information — putting the information out there to people who would not check out WebMD.com, or maybe don’t see their internal medicine doctor. Younger women, who believe a heart attack isn’t something they need to consider, get their eyes checked, they see their ob/gyn annually, they get their teeth cleaned — but they don’t get overall body physicals. If we can get them to know their symptoms, it could potentially drive them to an earlier diagnosis.

KA: It’s also important to understand the history of your heart.

DW: How so?

KA: For example, my grandfather dropped dead at 52, my uncle at 47, and my dad died after 12 years of heart attacks and stroke My internist said, ‘You don’t have anything to worry about — that’s the male side of the family.’ I’m not going to inherit a bad heart from my dog. A heart is a heart is a heart. It’s your heart history.

We are focused and passionate about helping women save their lives.

CP: All women.

KA: Heart attacks are non-discriminatory. We really believe we can do for women and hearts, what the Susan G. Komen Foundation does for breast cancer. We’re not about raising money for research. It’s about awareness. It’s not about me, it’s not about Carmen, it’s about you.

Knowledge is power. My husband didn’t know that a cardiac blood enzyme test exhisted. This whole thing about is giving people the power to save their own life.

DW: I can see why that wouldn’t be the ER staff’s first thought. My dad’s a cardiologist, and I don’t think if I was throwing up, heart attack would be the first thing he thought of.

KA: I hope he would.

The medical; profession looks at women as being a hysterical bunch of people. And we’re not. Women deal with pain their whole lives. They have menstrual cramps, they birth children, they get the flu and still get up and get the kids to school. We are taught to work our way through it.

We make ourselves the last priority on the list.

CP: Exactly.

KA: And it ends up costing us our lives.

Related posts:

1. Interview with Lisa Salberg, Founder and CEO, Hypertrophic Cardiomyopathy Association
2. Interview with Disruptive Woman Lindsay Avner

The U.S. healthcare system can no longer rely on medicine as its primary form of healthcare. Our U.S. medical schools cannot increase the physician workforce fast enough to keep pace with population growth and the needs of baby boomers.

The physician workforce decreased from 772,000 doctors to 633,000 doctors since 2000. Significantly, the U.S. population grew by 50 million people since 2000. Care shortages, dramatic cost escalations and more people without insurance require immediate action.

Our nation can immediately increase care and reduce costs by maximizing direct patient access to the 2+ million healthcare professionals who are authorized and available to manage non-acute patient care. Rather than routing patients to physicians for non-acute care, we can route them to non-physicians who are legally authorized to manage care without oversight. This minor change in policy will free physicians to better manage acute care, provide patients with timely care and reduce physician oversight charges.

To make this change in our healthcare delivery model, certain government healthcare policies must be modified. For example, Medicare should eliminate its policy of disallowing direct reimbursement to advance practice nurses.

Non-physicians also need an infrastructure to bill public and private insurers for their services in order to:

• Reduce paperwork burdens and costs for both parties
• Increase the accuracy and speed of communications
• Protect providers and payers from fraudulent billing practices
• Identify effective options to more expensive medical care
• Help create more effective federal and state healthcare policies

Available Infrastructure

ABC Coding Solutions offers over 4,500 codes (called ABC codes because they are five alphabetic characters) to fill gaps in the medical coding systems required by the government for filing insurance claims. These codes fit into the established insurance claim filing and reimbursement infrastructure, do not require any modification to current business practices, are multi-dimensional and convey information that is not required of medical codes – primarily because physician scope of practice rules are similar in every state.

Unlike physicians, non-physicians are governed by different scope of practice rules in every state. The ABC coding system has over 20 million references (by code and practitioner type) to state scope of practice rules. By helping determine who can do what in each state, this coding system helps practitioners and payers avoid government fines that can be as high as $10,000 per claim (Fraud and Abuse provisions of HIPAA).

Proof of Concept

In 2003, the U.S. Department of Health and Human Services authorized testing of ABC codes.
Under this authorization, ABC codes have been field tested in over 1.5 million transactions.

Alaska Medicaid, the largest beta test site, reported a 50% cost benefit by using ABC codes to file claims based on behavioral health care services delivered by 500 paraprofessionals to 4,000 underserved people in bush communities of the state from 2004-2007.

In New Mexico, a Medicare HMO increased access to alternative medicine from 500 seniors in 1999 to over 21,000 seniors by 2007 using ABC codes.

The American Nurses Association, representing 2.9 million nurses, included ABC codes as a “recognized” nursing terminology in 2000 and has encouraged adoption of ABC codes since that time.

View Melinna Giannini’s speech to the National Press Club below:

Related posts:

1. Balancing Access to Experts and Better Pay for Primary Care
2. Ten Good Things About The U.S. Healthcare System
3. 10 Things You Need to Know About the Healthcare Stimulus