The following is a guest post by Sheila Rittenberg the Senior Director, Advocacy and External Affairs at the National Psoriasis Foundation. During her tenure with the National Psoriasis Foundation, Ms. Rittenberg has led the organization’s transition as a leader in health advocacy and public policy, emphasizing access to care issues and increasing investments in psoriasis research. She acted as Co-Chair of the National Institute of Arthritis and Musculoskeletal and Skin Diseases Coalition and has assumed various advisory roles including that of committee member to the Office Oregon Health Policy & Research Drug Effectiveness Review Project and member of the National Health Council, Grassroots Technical Assistance Task Force. She is an author and contributing author on advocacy and clinical consensus publications and has been a public speaker on behalf of the psoriasis community.

Shelia Rittenberg

Overhauling health care… deepest budget cuts in history… A moral battle framed around health care reform…

These are only a smattering of the emotionally charged messages inundating ordinary citizens in America. How do people stay engaged and believe in the work of the country? How do they avoid being jaded about health care reform when politicians toss around accusations and critiques about policies and the people who propose them the way we might toss a ball around with our kids?

I have always believed in the power of bringing people together and connecting them in a meaningful way to those who are creating policies for the rest of us. It’s no different when it comes to health care policy. Here at the National Psoriasis Foundation, we practice “The Three A’s” – Action, Authority and Accountability. Keeping our constituents engaged in relevant issues and problem-solving achieves a spirit of action and purpose for everyone concerned. Leveraging that advocacy helps unify “grassroots” and establish credibility and authority as the voice of the community. Communicating these successes demonstrates that our organization is accountable for the public policy changes essential to our people.

The results of bringing “ordinary people” to talk to policymakers can be profound. There is a transformative power of this work we call advocacy. In our world of psoriasis, there are countless triumphs: the woman meeting with her legislator for the first time who told me she would never look at her psoriasis the same way again; the retiree who has re-invented himself at age 70 as a firebrand psoriasis political activist; the 16-year-old who changed career plans after testifying in Washington, D.C., on behalf of the pediatric psoriasis population. The point is, taking charge through Action, Authority and Accountability can change a person’s life — and society, at the same time. (more…)

By Jane Sarasohn-Kahn. “Ward and June Cleaver have left the building,” observe analysts at Nielsen. “The white, two-parent, ‘Leave it to Beaver’ family unit of the 1950s has evolved into a multi-layered, multi-cultural construct dominated by older, childless households,” starts a report from The Nielsen Company, The New Digital American Family.

Whatever ethnic flavor this Digital Family may represent, there’s one equalizer across all of them: the smartphone, which is owned by households across cultures and income levels.

First, the socio-demographics paint a picture of increasingly multi-cultural households. Recent immigrants to the U.S. accounted for 90% of population growth from 2000-2010, over-indexing for Hispanic and Asian communities. Hispanics are the fastest-growing segment of the multi-cultural nation, now numbering 50 million people in the U.S. Marriage seems to be going out of fashion, with only 52% of adults being married in 2008 compared with 72% in 1960. In the next decade, households with young children will grow more slowly than in the past; the greatest growth will be among multi-cultural, lower/middle income families. Nielsen forecasts that most families with kids in the U.S. will be multi-cultural before the end of this decade. (more…)

This guest post was written by Nalini Saligram, PhD, founder and CEO of Arogya World. It originally ran on Arogya World’s blog on April 22nd.

On Earth Day, which was marked recently on April 22, 2011, we generally tend to focus on the impact of people on the planet. But it is equally important to consider the impact of pollution on people and health including non-communicable diseases  (NCDs). 

NCDs, which include cardiovascular disease, diabetes, cancers and chronic lung disease, are gaining much-needed attention this year in advance of the upcoming pivotal UN High-level Meeting on NCDs on September 19-20.  NCDs – yes, the word is hard to pronounce and doesn’t quite roll off our tongues easily, but I am sure HIV/AIDS was quite a mouthful too in the early years – cause an alarming 2 out of 3 deaths in the world today, with a staggering 80% of them in developing countries.  Earth Day has given us another opportunity to draw the world’s attention to NCDs and what we can do about it.  This essay is my personal act of green – one of the billion the Earth Day organizers asked for this year.  

I don’t intend to talk about carcinogens and the rising rates of breast cancer nor about the impact of outdoor air pollution and vehicle exhausts on NCDs.  

Simply cooking every day – something all women do all over the world, sometimes over open fires as I saw first hand growing up in India, in villages, and even many towns and cities – this very basic everyday act can be extremely hazardous to women’s health.    

In many parts of the world, women spend 3-7 hours a day preparing food, often in front of an open fire.  Harsh economic realities force them to rely on cheaper fuels like firewood, coal and even dried cow dung.  Their babies are sometimes strapped to their backs or are nearby.   Young children in such cases spend many hours breathing indoor smoke during the first year of life.

The facts are frightening.  Three billion people – nearly half the world’s people – eat meals every day that are cooked over unclean stoves.   And 1.9 million – mostly women and children in developing countries – die each year because of that.  Globally, pneumonia is the single most significant cause of under-five childhood mortality.  Exposure to cooking smoke doubles a child’s risk for pneumonia, leading to more than 900,000 deaths in young children below five. (more…)

FutureMed, the first program of its kind, is an executive program for physicians, healthcare executives, innovators and investors that focuses on exploring the impact of rapidly developing technologies. FutureMed will be held May 10-15 at Singularity University on the NASA-Ames Research Park in Silicon Valley.

Few fields have the potential to evolve more dramatically through disruptive, exponential technologies than healthcare. Low cost genomic sequencing and proteomics, ever-faster and higher-resolution imaging, artificial intelligence, telemedicine, stem cells, robotic surgery, smaller and more capable implantable and wearable devices, ubiquitous mobile applications, nanotechnology and synthetic biology–these and other game-changing technologies and innovations have tremendous implications for medicine, healthcare and the biomedical industry in the decade ahead, including the potential enablement of better, more accessible care at lower costs.

The five-day, intensive FutureMed program includes lectures, workshops and site visits that are led by notable faculty from the fields of medicine, biotechnology and innovation. CME credit is available for clinicians. In attendance will be world-class innovators and thought-leading faculty across multiple disciplines.

Some of the FutureMed faculty include:

• Peter Diamandis MD, Chairman of the X-PRIZE and co-founder of Singularity University
• Tim O’Reilly, Founder and CEO of O’Reilly Media
• Dean Ornish MD, Founder and President, Preventative Medicine Research Institute
• Thomas Goetz MPH, Executive Editor WIRED, Author of ‘The Decision Tree’
• Dan Barry MD PhD, 3 time Space Shuttle NASA Astronaut and Roboticist
• Catherine Mohr MD, Director of Medical Research, Intuitive Surgical
• David Ewing Duncan, Author of ‘Experimental Man,’ and the ‘Personalized Medicine Manifesto’
• Randy Scott PhD, Founder and Chairman of Genomic Health
• Roni Zeiger MD, Chief Health Strategist, Google
• Christopher Longhurst MD, Chief Information Officer for Packard Children’s Hospital, Stanford Medical School
• Michael Gillam MD, Director of the Microsoft Medical Media at Microsoft Health
• Allan May, CEO of Life Sciences Angels
• Michael West PhD, Founder of Geron and BioTime Pharmaceuticals

A full list of faculty is on the FutureMed web site.

Core tracks include those which will explore the exponential trends in Information & Data-driven and Internet-Enabled Health Care, Genomics and Personalized Medicine, Regenerative Medicine, Robotics & Future Interventional Approaches, NeuroMedicine, Device & Drug Development, and Entrepreneurship.

Click here for more information or to register. Follow FutureMed on Twitter @futuremedtech and at facebook.com/futuremed.

The following was published online by Nature on April 21st.

By Anu Acharya. With careful due diligence, help from financiers and a keen eye, even small companies can grow through mergers and acquisitions.

The word ‘merger’ often is associated with a big company buying a smaller one or two large companies coming together. But it is not only large companies that can succeed through acquisitions—even startups can use mergers as an effective way to grow their businesses. As a small team leading the startup Ocimum Biosolutions, based in Hyderabad, India, a decade ago, my colleagues and I could have opted to grow the company internally. But early on, we decided to take the path of mergers and acquisitions (M&As) to expand our company.

We had difficult choices to make as our business grew, and we learned invaluable lessons. Here, I share some of my experience and show how Ocimum evolved from a small company into a globally integrated genomics firm.

Ocimum’s long evolution

Ocimum Biosolutions currently offers informatics solutions, wet lab genomic services and products for sample storage, processing and visualization of gene expression data, sequence data organization, small interfering RNA (siRNA) design, genome analysis, gene patterns, in silico gene optimization and customized biological databases. But a decade ago when Ocimum was just getting started, biological research had not yet comprehensively embraced ‘omics-based approaches, and our business was based on a different model.

We started by collaborating with pharmaceutical and biotech research organizations, solving their challenges and increasing the productivity of their R&D efforts through the application of our in-house informatics expertise. While doing this, we unearthed several places in the R&D value chain that could be streamlined with informatics, but in our first few years, we grew organically. We maintained a positive cash flow by licensing bioinformatics and enterprise software solutions like laboratory information management systems and by providing bioinformatics training.

Within a few years, we had built a thriving business with a steady pipeline. Money was coming in, and it would have been easy to be content with the direction of the company. However, Ocimum aspired to be more than a bioinformatics company—we wanted to be a ‘lab next door’ that could provide a researcher with services across the spectrum in a timely and cost-effective manner. To do this, we knew we would have to break out of our comfort zone and expand beyond the perceived limitations of our small team and startup company. We looked at our goals—a strong presence in the US, expansion of our portfolio of services to include biomarker discovery, and a customer base in Europe—and realized growth through acquiring assets seemed like a great way to build a large, scalable and sustainable company, so long as the pieces fit with our proprietary Research-as-a-Service (RaaS) business model. Ultimately, we achieved these goals through a combination of organic growth and three mergers (See table). (more…)

ON BEAUTY is a call to action: a documentary film and social engagement campaign calling on each of us to change the way we perceive, judge and treat individuals with inescapable physical differences. The film shatters prejudices by through the stories of individuals with genetic conditions. It challenges us to unearth the self-judgement and disapproval that blinds us from seeing the beauty in others. Dramatic, revealing, daring, and at times funny, this dynamic, multi-media campaign gives voice to a community of men, women and children who are excluded and ignored by today’s narrow beauty standard.

View the official On Beauty trailer below.

To learn more about the film visit: http://iambeauty.me/the-film/.

In the recent CNN article “Parents, don’t dress your girls like tramps” author LZ Granderson discusses what for some might be an uncomfortable topic. Some of the main points in his article are:

• Some parents dress their young girls in provocative outfits
• Retailers have encouraged this behavior by marketing inappropriate clothing
• It’s OK to blame retailers, but it’s parents who are ultimately responsible
• Children need parents who will set rules, not be their friends

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This post was co-authored by Disruptive Woman Archelle Georgiou and Emma Dougherty, Senior Analyst at TripleTree and originally published on the firms blog site, Uncommon Clarity. It was also posted on Archelle on Health.

9 million. That’s how many web hits are returned during a Google search for “Accountable Care Organization,” and reflects the countless articles, white papers and opinions that have been published regarding the potential successes and more likely pitfalls of the proposed ACO mandate. As highlighted in TripleTree’s recent post, our team is continuously evaluating the business development opportunities being fueled by the demands and requirements of these new provider organizations.  Last week, the members of our Healthcare Executive Roundtable recently discussed and debated an element of the ACO equation that is not typically highlighted but is clearly a critical component of ACO success (or failure)…Trust.

In boardrooms around the country, health care executives are focusing on the technical requirements for their future ACO’s clinical and administrative systems. They are pouring over spreadsheets and attempting to understand the data and analytical tools that will be necessary for adequate financial and quality of care reporting. Getting these operational elements “right” is important; however, these business leaders should also focus on designing a culture – and the corresponding behaviors, communication, and incentives that will fuel strong and collaborative relationships between the ACO and its community of providers.

As Ed Brown, CEO of Iowa Clinic puts it, “People are unclear about what the value-based world looks like, and they’re unsettled on what clini­cal integration really means. And nobody has really made it work.”  This lack of clarity around the value-based model will make it challenging for providers to leave the financial security blanket of the traditional fee-for-service payment engine.  Moreover, influencing them to modify their approach to patient care for the benefit of the system and the promise of shared savings is a monumental effort. Success by any measure will largely depend on the trust established between providers and the ACO organization itself. ACO’s should prioritize establishing trust with providers in three key areas:

• ACO Operations and Management:  Providers need to trust that the ACO is well run. Understanding the organizational governance, expertise of the management team and core capabilities (strategic assets) will help generate confidence that the ACO is well-positioned to generate enough shared savings to make participation worthwhile. In addition, it is critical that the ACO measure and report management performance metrics that demonstrate its accountability to the providers. (more…)

The following was originally posted on James’s Project by Mary Ellen Mannix, MRPE. The mission of James’s Project is to find, support, and help work that protects infants in their first year of life. James’s Project aims to reduce infant mortality by focusing on patient safety isssues that affect the start of life. Our tools are education, communication, and collaboration.

Rainy days and Saturdays get me down. (Sounds like a good song lyric.) Rainy days force a quiet among the constant buzz of activity. Saturdays are the closest thing to a once a week siesta. Nearly ten years ago, on a Saturday morning I had to to reflect on the beliefs I had held dear all my life as I was holding my newborn son who had just died. It took more than five years before I could wake up on a Saturday without feeling a desire to go back to sleep.

Today the rains came and brought with them memories of a Saturday past. Tears and frustration and disappointment rallied. Those feelings don’t make me feel very peaceful. Taking the analytical approach learned in grad school, I identified five causes for a peace builder in health care to have anger, frustration and the occasional tears.

Poor communication. This is a well-documented root cause for most every medical error. Earlier this week Kathleen Sebelius of the Dept of Health and Human Services and Don Berwick, MD of the Centers for Medicaid and Medicare announced the creation of a $500 billion initiative to encourage more collaboration between hospitals, health care providers, community organizations, and employers, etc to improve care and lower costs. James’s Project was among the first ten organizations to make the public pledge for the Partnership for Patients: Better Care, Lower Costs in the greater Philadelphia area. Through this website consumer and clinical organizations can seek out others with similar values for collaboration. When a cancer patient called me this week sharing she had left the hospital without discharge instructions together we took a look at this website. The large teaching hospital had not yet pledged. By the end of the week, the institution had taken the pledge but the patient is still waiting for her discharge instructions. This is new resource where patients can grab the wheels and drive change by asking their hospital, health care system, insurer and or doctor if they have signed the pledge. Also ask – what community or patients group are you collaborating with?

Gag Clauses. As a rule, people love to hate the plaintiff in a medmal case. If you actually disagree with me, think of before you knew a loved one who died from medical errors. Americans love to love the whitecoats. Anyone associated with a trial lawyer automatically becomes a blackhat.
I believe in the judicial system our forefathers created. Everything breaks down at times. As a teacher, I hope that learning happens from mistakes. With James’s case, it was clear the physicians had as much of a right to a fair trial as my son did. It could have all been spared if open communication between us had been allowed. I was offered $750K to not go to trial and to not speak of my son’s whole life. All I wanted was to cover my attorney’s fees (about 45K at that point) and a 5 minute conversation with one of the defendants. It was not an acceptable counter offer evidently.
I can reflect now that I did get that conversation (and much more than 5 minutes) with two doctors (not just the one) and I did that all on my own.
Despite the tremendous pain of our shared trauma we have been able to heal by restoring a relationship. Our story and how we did it is how money in health care conflicts can be saved. More importantly, it teaches so many what not to do when they may find themselves in a similarly shared event. I have spent years and dollars investing in formal education to share this. (more…)

The following was originally posted on Real Women on Health on April 15th.

Join us in an upcoming on-line radio show on Wednesday, April 20th at 12:30 pm EST with Tina Krall, Executive Director of a Non-Profit called Fibroid Relief. We’re working with Disruptive Women in Health Care on this show and bringing you new information that may change the course of how women are treated for fibroids. Not all fibroids are the same, so you need to talk to your doctor, but Wendy Perkins, featured in this video, is an example of how new treatment options help women live into wellness.

Join our on-line radio show with Wendy and Tina Krall, Fibroid Relief and Dr. John Fisher, a radiologist who has performed thousands of minimally-invasive, image-guided procedures and hundreds of embolization procedures, many of them for uterine fibroids.

For more information on non-invasive treatment options for fibroids, check out Fibroid Relief. To learn more about hysterectomies, you should look at this Women’s Health web site.

By Robin Strongin. When I think of the actress Catherine Zeta-Jones, my mind immediately goes to Velma Kelly, the role she played in the movie Chicago.  Brash, self-assured, confident in using both her sensuality and a tommy gun as effective weapons, Zeta-Jones owned that character and was the silver screen epitome of a powerful woman.

But now we’ve learned that the woman playing Velma Kelly and other memorable roles is, in actuality, a very vulnerable individual facing significant challenges in her life.  Her publicist announced on Wednesday that Zeta-Jones had checked herself into a mental health clinic for treatment of a bipolar disorder.

Juxtaposed this week with the actress’s revelation was a study released by the U.S. Centers for Disease Control and Prevention pointing out that suicide rates among working-age Americans rise and fall based on economic cycles, the implicit warning being that incidences of suicide can be expected to increase during the difficult economic times currently affecting so many households.

With this disturbing report in mind, there is no question that Zeta-Jones performed a valuable public service this week.  She reminded us that there is and should be no stigma attached to admitting the need for behavioral health counseling.  By being frank about her illness and her need for professional health care, it can be hoped that she has made it a little bit easier for others to do the same.

The fact that she is currently involved in two movie productions also underscores the fact that a behavioral condition does not preclude a productive life and career.

In such stressful times, mental health support is an area that requires diligent monitoring by both policymakers and business leaders.  Good news was found in a survey released last fall by the Kaiser Family Foundation.  Kaiser found that, in response to implementation of Mental Health Parity Act passed by Congress in 2008, one-third of employers with 50 or more workers made changes to their mental health benefit packages.  Of those, 66 percent eliminated limits on coverage and only five percent dropped coverage altogether.

Not diminishing the financial difficulty of maintaining quality health coverage, but employers have a great deal at stake in maintaining behavioral health benefits.  Mental health has been cited as one of the leading causes of absenteeism and lost productivity in the workplace, making the case that behavioral health support is a sound investment.

And, as Catherine Zeta-Jones demonstrated this week, when that support is available, individuals in need of assistance shouldn’t hesitate to utilize it.

Disruptive Women Sharon Terry’s article “Power to the People: Participant Ownership of Clinical Trial Data” was published in Science Translational Medicine.

Abstract: Participation in clinical trials is dismally low. In this age of electronic sharing of information of all sorts, trial participants can easily share clinical trial data. The benefits of participant ownership and sharing of trial data appear to outweigh the risks. Thus, the time has come to crowd-source data for diagnostic and therapy development.

To download full article click here.

In 1997, Sona Mehring, founder and CEO of CaringBridge, started the site to help her friends who, in the midst of a health crisis, needed a way to keep everyone informed about what was happening. Since then 42 million people have connected to someone using CaringBridge.

Watch Video

CaringBridge is a non-profit and its service is 100% free for anyone who needs it. It gives patients and caregivers a way to receive support, and friends and family a way to provide it. Sona summarizes some of the benefits as:

• Saving time and emotional energy of communicating with everyone individually
• Providing personal and private spaces for sharing 
• Bringing people together when health matters most

80% of patients and caregivers have indicated that connecting with their friends and family on CaringBridge has positively impacted their healing process.  Now that’s saying something!

Don’t forget to join us on Facebook, Twitter, LinkedIn, and YouTube. 

 The following is a guest post by Nalini Saligram, Founder and CEO, Arogya World.

The key priority of the UN Summit on Non-Communicable Diseases (NCDs) is to ensure it lives up to its promise of being a genuinely transformative moment in world health.

The good news is that momentum is building. Until just a few months ago, the very word NCDs was unknown. Now thanks to the UN Summit, the foundational work of the WHO and of the NCD Alliance and the Global Health Council, NGOs, academic centers, individuals in key corporations, and civil society, an NCD community is beginning to gel. We are debating the definition of NCDs, issuing Declarations articulating the “asks” from the UN Summit, attending conferences and meetings to discuss how we can address NCDs the world over, and encouragingly, we are mostly agreeing with one another. The Summit has already energized the entire NCD community.

So what must happen for the Summit to be considered transformative? It should serve as a pivotal point to rally the whole world, touching not just the UN, policy elites, and the NCD community, but families everywhere. It must make NCDs resonate with the man on the street, so that everyone the world over is clear on the issues, what their governments and communities are doing to address them and what they themselves can do to prevent them.

The Summit should ignite action. It should lead everyone to ask themselves the question – How can I use my platform and my sphere of influence to help reduce the crippling public health impact of NCDs? It should lead to the global health community embracing NCDs fully and to donors investing in them substantially. Heads of State should attend the UN Summit, and make public commitments to address NCDs in their own countries and globally. The Summit provides a wonderful opportunity for industry to show sincere engagement in improving the lives of people in the communities where they live and work. And for NGOs to show how they can do better.

The Summit should deliver some long-term political wins. It should address how NCDs will get included in the next iteration of MDGs and also how the world will pay for NCDs. It should identify some way the world will monitor progress post-summit. And it should foster true collaboration between multiple sectors globally and in-country, because a multi-sectoral approach is the best solution for these complex diseases. The UN could issue a “how-to” guide for countries – spelling out for example how countries can move from a disease-specific to a people-centered approach as the WHO recommends, or change from vertical to diagonal health delivery, or even how health systems could be strengthened.

I don’t think we can declare the Summit “transformative” until people feel a sense of personal responsibility and make healthy lifestyle choices to prevent disease, until leaders step up and “own” the crisis, until governments roll out national NCD plans, until we figure out how to measure results, and until health and non-health, state and non-state players work together to deliver sustainable solutions. This wont all happen before September, but the work should begin now.

NCDs are our generation’s problem to fix. And fix it we must. The UN Summit is our first step.

Originially posted on the Center for Strategic International Studies on April 6th. Nalini Saligram was the winner of the CSIS Blog Contest on NCDs.

McGuire: The Land Grab is Misguided

By Archelle Georgiou. The former chairman and CEO of United Health Group Dr. Bill McGuire recently discussed the opportunity for wireless health (or technology enabled healthcare or whatever you want to call it), wasteful spending on EMRs, the need for interactivity among healthcare technology applications, opera, education and much much more. Dr. McGuire is the Vice Chairman of TripleTree Holding Company and is delivering one of the keynotes at the upcoming Wireless-Life Sciences Alliance Convergence Summit in San Diego next month. TripleTree is an investment bank and one of the founding members of the WLSA and the summit.

Read on for an edited version of our recent conversation with Dr. Bill McGuire.

How do you characterize the opportunity for wireless health? Could you also provide us with some sense of the current investment climate — a lot of activity? A lot of interest but not a lot of activity?\

I like to position it as: How can we build products, services, and systems that facilitate the eventual appropriate health and wellbeing for the people in this country and elsewhere. In pursuit of that and in consideration of all that has been done — both good and bad — and all that is yet to be done, which is significant and formidable, I think the whole area of technology enabled healthcare or mHealth or any term you’d like to apply, offers significant opportunity to meet that end. It still remains to be seen obviously what the most appropriate areas and most beneficial areas will be to accomplishing that. When it comes to investments, of course, there will be a lot of investments in things that don’t make any difference or are not contributory to the kind of outcomes I am describing.

What kind of things?

If you look at what has happened in last several years particularly with reform: These huge expenditures that have been directed at technology applications in healthcare. I’m afraid we will see that we have spent an enormous amount of money for marginal or no gain. It’s very indiscriminate. That’s classic healthcare, though and classic investing: ‘Let’s just throw money at things.’

You have the whole idea of applications on cell phones for example. Embedded among [the thousands] of health apps out there are probably a few that will make a difference in the lives of some people. Those apps should theoretically lower costs and improve outcomes, but most of these apps exist because we happen to like apps, it’s a nice story, so we chase them. Discerning what is ultimately going to make a difference and result in the kind of outcomes we are looking for, which is differentiated from just investing money, is the critical issue. The smart investors, smart developers, smart policy makers and so on will benefit from that. The land grab that is going on right now — just throwing money at it — is a little bit misguided.

Another issue is the lack of interactivity among these technology applications. The fragmentation and silos continue. Rather than determining how to piece a number of necessary components together, we have a lot of independent efforts out there to chase after something. We ask for electronic medical records (EMRs) but we don’t necessarily put out standards of performance and interactivity between them. So when someone comes along and asks to gather data or information we know that we can’t get it from each and everyone of them. (more…)