The call came around 7 p.m. on a languid July evening as I was settling in with a good book and a big glass of iced tea. My teenage daughter was at a sleepover and the Friday evening stretched ahead quiet and uneventful. And then an Arlington County, Virginia social worker was on the other end of the line, gently pressuring me to provide emergency foster care for a seven-year-old boy who had abruptly been removed from his family because of signs of abuse. It was Friday evening, after all, getting late, and the child needed a place to sleep. It was only for the weekend as a more permanent placement was sought, one that could provide the specialized therapeutic care he needed. He was currently at a hospital being evaluated, no one knew if he’d been fed dinner, it was getting late…

When he arrived two hours later, J was excited to meet our cat and explore our house. Of his bedroom, he asked, “Who else sleeps in there?” No one, I replied. It’s just for you. “I’ve never slept alone before,” he said with wonder. He didn’t appear to be tired or scared, even when the social worker beat a hasty retreat after explaining he needed medication but I would have to pick it up myself the next day. The social worker had given him a radio controlled car and he was clearly more interested in assembling and playing with it than with sleeping or talking. A friend of mine came over to get the car working. J was wound up but didn’t talk about the weirdness of the circumstances. He played, he ran around, he picked up the reluctant cat, he marveled at the plethora of cable stations on our TV and the fact that I had a brand new toothbrush for him. I couldn’t get him to sleep until sometime around 1 a.m. and then only by sitting by his bed and repeating soothing words.

We filled Saturday with activities — a visit to the nearby playground, a quick run to Target to pick up clothes for him to wear, a viewing of the loud and hideous Transformers movie, a walk around the neighborhood. It wasn’t until we were finally alone and quiet for dinner at a local restaurant that he looked at me and said, “I want to go home.” We both knew which home he meant. And this is where foster parenting becomes the hardest job I know. I gently explained that he would go home when everyone agreed he would be safe there. His eyes teared up as he stroked the large bruise on the side of his face. “This was an accident,” he said.

By Sunday, he was determined to stay with us if he couldn’t return to his own home. I tried to tell him about the contractor who was arriving to tear up the only guest room in our house — the one he currently occupied — and about the student from Nairobi who arrives in early August to occupy the room until Thanksgiving. “I can sleep on the couch,” he said. We went to a minor league baseball game where he didn’t know a pitch from a run and kept saying he couldn’t read the numbers on the scoreboard. He didn’t understand why everyone stood for the national anthem and why I insisted he join us. And he begged me to let him stay with us. We joined friends at a neighborhood swimming pool and then for a backyard barbecue. Keeping him busy seemed like the best strategy.

But by bedtime Sunday, he was again begging to remain with us. “I’ll be good,” he promised. “I’ll keep my room clean and I’ll feed the cat.” It was heartbreaking. Eventually he began asking where he would go when he left us, something I couldn’t answer. I promised he would go to nice people, but really what kind of promises could I make to a boy who just wanted to go home? He wanted to be with the people he loved, even if they hurt him. He wanted to wake up in a bedroom shared with others, with a TV that doesn’t always work, in a home where he says a machete is kept for “protection.” The bruises on his face will fade. He’ll forget about his long weekend in our home. For this little boy, despite the lousy hand dealt him, there is and will always be no place like home.

This piece is cross-posted at The Huffington Post.

Jennifer Berk is Director of Marketing and Internet Strategy at Amplify Public Affairs, and she’s behind most of the news links posted to Disruptive Women’s Twitter account.

I’m a fairly informed patient, but by no means a health care expert.  That makes working on this blog a wonderful opportunity: I can learn about complex health care systems from blog posts, news stories, and events – and share the information I’ve found.

Jonathan Sheffi is a friend of mine from college and a future biotech executive (he’s interning at the FDA this summer before heading to Harvard Business School). He recently wrote a comprehensive blog post about follow-on biologics, and I had a chance to talk with him about why he’s drawn to health care, biologics issues, and the upcoming BIL:PIL unconference. Listen to the podcast:

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Read more:

• http://jonathansheffi.com/ or @sheffi
• http://bilpil.com (October 30-31, San Diego)

It’s been 224 years since Paul Revere made his famous “Midnight Ride” from Boston to Lexington to warn the British were coming, but had Paul Revere been alive today he may have alerted people that the 5th Annual Games for Health Conference was being held in Boston on June 11 and 12. This year’s conference boasted a record number of attendees – nearly 400 people – and included over 55 sessions, three expo rooms, and two new tracks focused at some of the fastest growing areas in Health eGames – Exergaming and Cognitive Health.

I attended this year’s Games for Health Conference, giving a presentation on Healthy Advergaming and I also featured some new healthy gaming initiatives in the iConecto booth. At last year’s Games For Health Conference, we announced the launch of the Gaming4Health.com portal, the first online social network for Healthy Games. In addition to featuring updates to this portal, this year’s booth featured iConecto’s BrainXercise training for healthcare professionals. BrainXercise features a combination of cognitive training games and a number of skill and knowledge-based performance games developed by iConecto. The performance improvement games include fun titles like Associate Safety Leopardy (a quiz show like Jeopardy), Swine Flu Mania, and the Look-Alike, Sound-Alike Drug Matching game. The first deployment of BrainXercise is for Clinical Café, a social network for health care professionals focused on improving quality, safety and compliance, sponsored by Quantros, Inc.. Quantros delivers quality, safety and compliance reporting software solutions to thousands of hospitals and has hundreds of thousands of users.

In addition, we debuted the newly released exergame for the Wii, EA SPORTS Active. There was great interest in this game based on Kevin Chorney’s, the Producer of EA Sports Active, keynote speech. iConecto also gave demonstrations of the Gaming4Health.com space in the virtual world Second Life. This virtual presence makes it easy to give corporate demonstrations in a virtual space and show how immersive and entertaining training can be when combined with virtual worlds.

My presentation, titled “Health Advergames: The Good, the Bad and the Ugly,” took a comprehensive look at the history of Advergames in general, and how food companies, pharmaceutical companies, and organizations with a healthy behavior message are all trying advergames as a means to share their message. This is a topic area of extreme interest to the conference organizer, Ben Sawyer, who is hoping to have updates presented at each year’s conference. In the exergame area, companies like Disney and Kraft are developing games that use a dance pad and there is even a Sponge Bob SquarePants pedometer to encourage younger children to get active. In the healthy eating category, the point was raised about the power of food advergames to influence younger children’s desire for a given product. The caution is that there are many unhealthy food products also using advergames to sway children’s product loyalty. In the pharmaceutical arena, examples were provided from Mirapex (used to treat restless leg syndrome), Viagra and Nasonex. It was learned that the Viagra game was pulled because it failed to provide the FDA’s required product warnings within the game.

I believe the growth of health advergames will come from a variety of areas. These include: iPhone and other mobile applications, the use of advertising and advergames in virtual worlds, and the inclusion of health advergames as part of health-related web sites. The research has shown that web sites with games are able to capture audiences for longer periods of time.

Overall, this year’s Games for Health Conference was a great success. It is evident from the number and quality of the attendees that this particular area of Serious Games is being taken more seriously, both by game developers (like Nintendo and Electronic Arts) as well as those people from the medical arena that are looking at new and innovative ways to revolutionize healthcare.

At the end of June 2009, Disruptive Women in Health Care ran a series of posts that explored the issue of Comparative Effectiveness Research (CER) from a variety of viewpoints and perspectives:

• Patients
• Providers
• Innovators
• Caregivers
• Policymakers
• Rare Diseases
• Minorities
• Gender

While there is tremendous potential in the power of CER, there remain a number of troubling issues and difficult questions.  The promise and the pitfalls are reflected in the new CER ebook we put together, which encapsulates each of the posts.  To download a free copy, please click here.

As the New York Times reported, House Democrats proposed a hotly debated bill where families who make $500,000 would have to pay an extra $1,500 to help subsidize health insurance for the poor. (And if a family makes more than $1 million, they would have to pay $9,000.)

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This month, Disruptive Women welcomes Andre Blackman, Health Communications Analyst at RTI International, a non profit research organization, as our July Man of the Month.

Andre Blackman has an extensive background associated with science, technology and public health, conducting research in institutions such as the Naval Research Lab, NASA and WESTAT. This merging of technology and health has proved helpful in his current work in Health Communications.

Andre is very passionate about the role of new media, mobile technology and other emerging technologies as it relates to health communications and public health in general. You can find his thoughts on the intersections of health and technology through his blog, Pulse + Signal and via Twitter.

The past few years have seen a significant increase in the use of emerging technologies to improve public health all around the world. From grassroots initiatives empowering citizens in low-resource areas to making sure consumers get the healthcare they need – changes are happening for the better. This article will aim to look at a specific area of the ‘citizen empowerment’ – the application of SMS (Short Messaging Service – or texting) and mobile phones in public health.

With the onset of social tools such as social networking sites (Facebook, Myspace, etc.) and real time information hubs such as Twitter, we are exposed to numerous ways to stay connected to each other. Our mobile devices are equipped with applications that allow us to do a myriad of things – many of which focus on entertainment and productivity. Another very important part of our lives is maintaining good health and the mobile phone is making strides in that area. mHealth is the term that has been coined to describe the interaction of mobile technology with the improvement of health.

mHealth is exploding onto the scene as the next big technology boon for public health – the main reasons this is true are twofold: ease of implementation and relative low cost of operation/maintenance. This is especially true in the developing world and in low-resource areas where technology options are relatively sparse. The use of SMS has become a tremendously powerful way for health clinics in Africa to communicate with their community health workers who are traveling to villages to tend to patients. Imagine the ability to significantly reduce fuel consumption and get real time data on medical adherence in a world where it make take several weeks to get this information.

All of that from a technology that for many of us in the developed world may take for granted.

A few months ago I presented this information at the North Carolina Division of Public Health – here is the presentation that touches on the basics of mobile technology and how it can be applied to the public health landscape. It is by no means comprehensive but gives a good idea of where things are and thoughts on where things can go in the near future.

Private sector organizations such as Voxiva have been taking the lead on mobile initiatives, especially in health. Nonprofit organizations and local health departments have also been dipping their toes into the use of SMS technologies to get health information out to residents. The government has also become a supporter of mHealth initiatives and the Centers for Disease Control and Prevention (CDC) continues to innovate in this area. Several weeks ago, I wrote about a hypothetical situation in which public health could benefit from a mobile application called The Extraordinaries, which uses the free time of consumers to volunteer their time for good.

From a recent article on mobile communications in health via Mobileactive.org:
“Mobile provides a fantastic channel for communication,” said Erin Edgerton, senior social media strategist at the CDC. “It’s always on, always with you and provides personal access to information.”

I heartily encourage you to begin exploring this venue of health communications and figure out how you or your organization can integrate strategy with mobile technology.

Additional Articles/Resources:

Mobile Active – a great starting point for learning about using mobile technology for social impact. Contact them with any questions

PopTech – Can Your Cell Phone Change Lives? My article on mHealth

Texting4Health – conference and newly published book

ISIS initiative – sexual health information/STD prevention through SMS technology

As the nation’s oldest consumer organization, the National Consumers League has been working toward health reform for decades.  Our former President, Josephine Roche, drafted the first piece of universal health care legislation for President Franklin D. Roosevelt in the 1930s.  Like so many others, we are pleased to see that today our foremothers’ determination to provide health coverage for all Americans is coming to fruition.

The League appreciates the hard work of those in the HELP and Finance Committees in the Senate and in the House Committees in providing affordable and quality health care for all Americans.

At this moment in history, more Americans than ever before agree that health reform must happen now and can’t be put off for another day. 85% of Americans think the system needs to change, according to a recent New York Times / CBS News poll.  Consumers need access to health care that is high quality and is  centered around their needs.  The places where Americans  live, work, and go to school must be involved, and each must be part of the national goal of living healthier lives.

All of this must be accomplished while keeping health care affordable. Right now, it is not. Sponsored health insurance premiums have nearly doubled in the last decade, rising three times faster than wages.  No longer will health insurance companies be able to discriminate against consumers because of their health status.

NCL also supports a public option, which will give us  transparency and competition between public and private insurers.  If we provide health care coverage to all Americans, we can also save hundreds of billions of dollars previously used to care for the uninsured.

With 75% of health spending going towards care for the chronically ill, we must refocus our system on prevention and health promotion. We can no longer tolerate a system dominated by treating problems; it’s time to provide Americans the necessary resources and tools to attain a healthy lifestyle.

The lack of comprehensive health care coverage is  America’s albatross – it makes our businesses less competitive and our workers less healthy.

Regardless of political ideology or special interest, we need to ensure that the system is reformed.  The cost of doing nothing is unthinkable.

As HHS Secretary Sebelius has said,  it’s the one of the most personal issues to so many Americans.  It is, after all, one of the only pieces of legislation that will truly affect EVERY American.

Yesterday I had the opportunity to moderate a fascinating panel: Drug & Food Safety in the Age of Social Media and Transparency. The panel was part of the Driving the Adoption of Health IT Through Innovations in Social Media conference in Washington DC.

There were three panels in all. Mine was the second panel. After opening remarks by Craig Stoltz, Founder of Web 2.Oh…Really (and Former Editorial Director, Revolution Health and Former Editor of the Washington Post Health section), we heard from experts on H1N1 Influenza: How Social Media Improves Communication & Collaboration For Public Health. After my panel, we heard from experts (including Disruptive Woman’s March Man of the Month, Dr. Ted Eytan of Kaiser Permanente) on Electronic Health Records: Using Social Media To Drive Health IT Adoption.

Drug & Food Safety in the Age of Social Media and Transparency Panel Summary:

Americans have been concerned about drug and food safety over the past several months as they grappled with E. coli, salmonella, flu, and drug safety scares. More and more people are turning to the Internet for information and the Department of Health and Human Services (HHS) has taken notice. Several agencies, including the FDA, are utilizing robust social media tools to help inform the public – health professionals as well as consumers. This panel focused on the general approach HHS is taking in addition to focusing on some of the specific tools the Office of the Secretary and the FDA have incorporated into their websites in order to quickly, accurately, and easily inform the public.

Drug & Food Safety in the Age of Social Media and Transparency Panelists Emphasized:

- efforts under way at the Department and inside FDA to incorporate social media tools—including how they are working, how they are coordinated, the lessons learned, and the challenges that have arisen
- from the health provider’s perspective, what has worked well, where there are gaps, and suggestions for next steps
- issues around the digital divide, health literacy, and how best to evaluate the usefulness of the information.

Disruptive Women is interested in your comments—how can HHS better inform the public about health alerts, public health incidents, food scares, drug/device safety concerns, recalls, when it comes to social media and other forms of communication?

The HHS panelists were very open to seeking our ideas. Let us know what you think and we will pass along your suggestions.

Drug & Food Safety in the Age of Social Media and Transparency Panelists Included:

- Andrew Wilson, Web Manager, Department of Health & Human Services (HHS)
- Sanjay Koyani, Director, Web Communications, Food & Drug Administration (FDA) – presentation
- Val Jones, MD, Medical Blogger and CEO, Better Health LLC – presentation
- Patricia Hinton Walker, PhD, RN, FAAN, Vice President for Nursing Policy & Professor of Nursing, Uniformed Services University of the Health Sciences.

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

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

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

Several weeks ago, I wrote about the need for a new paradigm, one that integrates Eastern inductive and Western reductive methodology so that efficacy can truly be measured in alternative medicine trials. In that post, which was part of the DWIHC Comparative Effectiveness Research Series, I argued that Western researchers continue to try to squeeze a square peg into a round hole, and in doing so, ignore the subjective element that is an inherent part of the fabric that we call Eastern medicine.

This past week, I ran across a study in Menopause that not only supports this contention but also challenges us to more closely examine the limitations of current investigations into alternative therapies.

ACUFLASH (the Acupuncture on Hot Flashes among Menopausal Women Study) was a randomized, controlled, parallel study comparing the efficacy of weekly acupuncture plus self-care to self-care alone in 277 menopausal women experiencing, on average, 7 or more hot flashes daily. But here’s the rub: unlike previous trials, ACUFLASH actually estimated the effectiveness of acupuncture in practice, meaning that the study was specifically designed to mimic the basic tenets of Eastern philosophy and incorporate the subjective. Consequently, after agreeing upon expected diagnoses and recommended point selection, licensed Traditional Chinese Medicine acupuncturists were free to diagnose, select acupuncture points and individualize treatment for each study participant.

Not only did the mean frequency of hot flashes decline at least 50% in half of women receiving acupuncture plus self-care, but significant improvements were also noted in hot flash intensity and overall quality of life measures. More importantly, by incorporating a larger study group, and eliminating sham needles and “standardized” (compared to individualized) practice, the researchers were better able to preserve the overall quality of acupuncture and what it strives in achieve, while still remaining true to the tenets of evidence-based scientific methodological standards.

Is this study without flaws? Certainly not. Indeed, the investigators acknowledge that the study participants were not treatment naive, and point out that sham acupuncture, which may be necessary for a true comparative analysis, is hardly “physiologically inert.” Nevertheless, I remain hopeful that the study design and its positive results may open the alternative therapy door a bit wider and lend further credence to its role in treating disease.

My husband Paul Berger suffered a stroke resulting from a ruptured aneurysm when he was 36—that was 20 years ago. Some things have improved, like treatment—the CT scan then could tell there was bleeding in his brain, but couldn’t locate the site of the burst vessel. A week later, after a follow-up test, he had brain surgery to implant a platinum metal clip. The night before the surgery, he had a re-bleeding, which probably caused the severe stroke, devastating his speech-language functions, and paralyzing the right side of his body. If this had happened today, the improved diagnostics probably would have located the problem immediately, and he might have had a coil or stent threaded through the blood vessel to the aneurysm, instead of opening his skull. He might have had a shorter recovery and little residual disability and I might not be writing this blog as a caregiver.

Some things have not improved—like health insurance coverage. As the years have gone by, coverage for hospital stays and rehabilitation have been shrinking. For example, Medicare has a cap on outpatient rehabilitation that makes no sense—it’s not capped if performed in the more costly hospital outpatient department, but limited to about $1,800 for physical and speech therapy combined, and $1,800 for occupational therapy provided in an office. At current rates, that’s about 45 hours of total therapy, not nearly enough for stroke recovery (to be fair, there is an exceptions process, but it is scheduled to expire at the end of this calendar year).

This leads to a more difficult issue in the health reform debate—what exactly should be covered by health insurance? Acute care, annual preventive visits, post-acute, healthy living coaching? Commercial health insurance has many ways to limit its exposure to the costs of long term chronic conditions, like surviving stroke, including caps on therapy. Another way is challenging access through “pre-existing conditions” ineligibility and/or very high premiums. As a result, the physicians and therapists seem to prescribe and set treatment goals that match the insurance plan, often short of the patient’s needs, especially for rehabilitation following stroke. They look to the survivor’s family, particularly the spouse/caregivers, like me, to pick up the torch and carry on.

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As our nation brainstorms the best way to reduce the millions of uninsured, we need to focus on the largest and fastest growing portion: 13.7 million young adults:

• 18-29 year olds make up just 17% of the population but 30% of the uninsured, and
• Entering adulthood triggers a serious risk of becoming uninsured as the rate almost triples from 11% to 29%.

As we look at this age group, it is critical to hone in on young adults with chronic medical conditions & disabilities (CMCD) since they cannot afford a single day without coverage.

Aware of the need to continue care, they, or their parents, are inclined to seek coverage. However, young adults with CMCD encounter many obstacles:

• Only 54% are able to attend college or work, usual prerequisites for insurance;
• Relying on individual coverage is risky because of pre-existing conditions and inadequate benefits;
• Young adults with CMCD are three times more likely than their healthy peers to earn under $15,000 a year and live in poverty, another risk factor for becoming uninsured; and
• A vicious cycle ensues when 54% of young adults with CMCD lack a usual source of care and two-thirds delay or miss care because of costs. Foregoing treatment hinders their ability to maintain the health status needed to go to college or work.

How can we assess the significance of a specific population without appropriate studies?
We had a logical reason for not studying this population – until now. In the past, children with CMCD did not survive to adulthood. Thanks to advances in medicine paralleled by a rise in chronic conditions, we now face a tidal wave of emerging adults with CMCD:

• Every year, over half a million children with CMCD enter adulthood, and
• Extrapolation of child health data reveals 4.5 million young adults aged 18-24 years have CMCD.

Unprepared, we are unable to build on the systems of support designed for them as children. These young adults with CMCD who struggled as children to be like everyone else and gain independence from their parents fall off a cliff, so to speak, when they turn 19. They age out of support systems, they age out of insurance, but what they are unable to age out of is dependence on their parents.

Even if young adults with CMCD are fortunate to have coverage, they experience another major problem with access: the dearth of adult physicians available, willing, and able to care for their childhood onset conditions. Too often, these young adults remain under the care of their pediatric providers, sometimes forever.

We need to ensure young adults with CMCD are included in health care discussions. What role do they play in issues regarding the uninsured, health care costs and resource utilization, poverty, and social welfare? What impact do they have on the workforce and its productivity? Can we afford to keep them invisible?

Beyond numbers, a moral imperative also presents itself. As a nation committed to promising our children good health and education, are we extending this promise to all of our children and young adults? Shouldn’t our children with CMCD have a fair shot of growing up into educated young adults with the best possible health?

As we embark on one of the greatest changes our health care system has ever seen, will we do the right thing and embrace children & young adults with chronic medical conditions & disabilities – the population that has the most to gain from improved access and quality health care over an entire life’s span – and put their needs at the center of the discussion?

The following guest post on Comparative Effectiveness Research comes from Maria L Kirzecky, R.Ph., MBA, who founded The Kirzecky Group, LLC – a strategic healthcare consultancy specializing in leading organizations to enhance their market position through market-focused business direction, innovative strategies, and sound science-based communications.

Why aren’t we as health care professionals clamoring for CER? Why shouldn’t we encourage health care policy makers and industries to align themselves to how we make clinical decisions? Perhaps we haven’t taken the time to fully understand the benefits of CER, how it could directly improve our ability to positively affect the lives of our patients, or we see it as something far-off and impossibly complex to implement. If we take a closer look at CER in relation to our needs as caregivers and front-line professionals attuned to the health needs of our patients, we can positively shape the debate on health care reform through CER.

The benefits of CER to healthcare professionals (HCPs), patients and other stakeholders
Efficacy, established within the confined settings of clinical trials using RCT is a necessary but not sufficient standard for deciding on how to treat patients for their conditions. Meta-anlaysis alone is not a sufficient way to address the lack of comparative effectiveness information. Performance, in terms of health outcomes, requires HCPs to make our best guess with limited information about which treatments work best for specific patients’ conditions.

Instead of settling for “siloed” information on health care treatments, what if we had richer information at our fingertips which evaluate treatments “relative” to one another and for specific patient types? By providing that kind of comparative information about treatments, CER gets us closer to the real word of how healthcare professionals practice. Instead of seeing healthcare reform getting between patient and doctor, we might look at CER as a significant step toward healthcare reform providing the necessary conduit between patient and healthcare provider by providing this much needed information to both groups.

Comparative treatment information enables us to choose the best treatments for our patients’ conditions. It helps us get to being closer to “right the first time”, limiting risk of using the “new” or latest treatments – just because they are new. Medical costs can also be reduced by not having to backtrack and consider more interventions based on failures, or adding on therapies and possibly creating even greater risks or problems, for example drug interactions resulting from unnecessary poly-pharmacy. In addition, disparities could be justified based on the results or outcomes substantiated in CER, rather than just being highlighted for their financial impact.

Patients and HCPs are not the only ones who will benefit from a performance-driven approach enabled by CER. Comparative information will save manufacturers’ costs by directing them to develop treatments with the most positive outcomes for the most appropriate patients, and away from me-to products with marginal performance value, directed at the masses. Thus, resources could be directed to developing more data rich and innovative products. Payers will appreciate appropriate costs associated with HCPs prescribing appropriate treatments the first time, resulting in improved patient health and reduced need for treatments or defensive medicine techniques.

CER is not a radical, far-off dream – we can do something now

There are those in the health care field who clearly see and desire the benefits of the performance-driven approach of CER, but are concerned that implementing CER is too daunting in scale and complexity to tackle. Here are three ways to look at addressing these concerns and taking steps towards proceeding with CER:

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Should managed care sue patients?

We arrive at the dawn of yet-another health reform effort with laws and regulations already in place to protect patients. These arose in past decades when the healer-patient relationship was eroding, presumably at the hands of uncaring clinicians and for-profit medical enterprises.   

The list of those rights was extensive and today’s debates are adding to the mix – guaranteed coverage despite pre-existing conditions comes to mind. The discussion of patient rights has always been politically attractive and I won’t denigrate any one of them. I’m not just writing from a policy perspective, but a personal one as well. I’m a patient, too.

The discussions of patients’ rights, however, has neglected the flip side of rights—responsibilities on the part of patients, and the support that we all need from our communities to be healthy people. Today’s healers are beset with immense responsibilities, yet with few reciprocal rights of their own in their relationships with patients or communities.

As patients, communities and a nation, we all too frequently fail to follow medical advice or practice healthy behaviors, and yet expect that helath care will ‘make it right’ when we become ill or incapacitated.  We smoke, abuse alcohol and drugs, carry guns, drive fast, forget seatbelts, neglect immunizations, shun prenatal care and spread sexually transmitted diseases. We ignore social problems until they create health care consequences—low birth-weight babies, elderly who lack social acceptability, and teens suffering gun-shot wounds. When these risky behaviors result in chronic or high-cost illnesses and disabilities, health-care providers are expected to assure that we get the care we need, insulating us from the cost of our choices by providing whatever we need within a fixed budget. The time has come to broaden all of our health policy and political discussions to encompass the realities that, with rights come responsibilities.

So some questions:

• If managed care has a responsibility to meet all the patients’ needs, do patients have the responsibility to practice healthy lifestyles?
• If patients have the right to sue health-care providers for the failures to meet the patient’s expectations, do health-care providers have a similar right—to sue patients for the costs incurred from their failures to follow medical advice?
• At what point do patients who have rights also become citizens who have responsibilities, particularly as we all—collectively—pay for each other’s health care?
• If the community has a right to call on health-care providers to keep us all productively at work and at school, do communities have a responsibility to do their share as well?
• As the population ages and more health-care costs are attributable to lifestyle, can we afford not to hold patients and communities more responsible for their own health-damaging, cost-increasing behaviors?

What will it take?  Will clinicians, payers and managed care groups be forced to sue patients and communities to get the debates going?

Consider hypertension. (more…)

This is a very difficult decision for me. I have not joined in the large group of friends, peers, and mentors in the health and tech world endorsing the draft of Health Data Rights as they currently exist.

Here’s the current draft: http://www.healthdatarights.org/home

Why not? It’s not a difficult question to answer, but the answer is difficult to share openly.

This is my patienthood we’re talking about here. That has been, historically, a huge compositional element of my personhood in total.

I can’t take this one lightly and start throwing smoke bombs at store windows without thinking it through very carefully.

When I saw the first draft, I immediately began looking at other Bills of Rights, including the US Constitution.

I thought about what Bills of Rights are supposed to do, and what I’d like a Bill of Health Data Rights to accomplish.

Do I think this Bill accomplishes what I’d like to see a revolutionary piece of rousing advocacy achieve? No.

Is it an excellent start? Yes.

Will I sign it as is? No.

Will I support the ongoing initiative with every fiber and dollar I can give? Yes.

Because this bill, and our choice and control over our personal health information, as well as establishing a view from within the system that acknowledges that choice and control, absolutely needs to evolve from this early composition.

I am stepping out on a huge, bowing limb here, fully expecting it to break under the weight of my unreasonably high expectations.

That being said, if I can’t have high expectations about a Bill that is supposed to support my right to my health information, what the hell good are ascribing to principles of any kind?

Again. This is my patienthood we’re talking about here. That has been, historically, a huge compositional element of my personhood in total.

I have not endorsed the first draft of Health Data Rights, despite spending significant time with several composers whom I love and respect and utterly believe have people-who-are-patients best interests at heart.

I must apologize now for the criticisms I am about to offer, which I also offered several times before the bill was made public.

I know many of you who worked tirelessly on this – putting in weekend hours and pooling political, personal, and professional capital to get this done.

I realize I am jeopardizing political, personal, and professional capital by NOT endorsing this draft.

I recognize and applaud your efforts at this early stage. However…

While I wholeheartedly support this initiative, I cannot in good conscience endorse this product.

I feel the results of the first round are problematic for several reasons, namely:

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