CHMP

The following first appeared on Sr. Fellow Liz Seegert’s blog, The Human Factor

Amid all of the buzz around Mother’s Day this past weekend, little attention was paid to a study that could potentially save thousands of lives. Researchers from the University of Pennsylvania Perlman School of Medicine found that in 75 percent of cases, automated external defibrillators (AEDs)  are too far away from cardiac arrest victims for the devices to have the best chance at saving lives.

They believe this is an important clue in the quest to improve cardiac resuscitation rates in the United States, which remain at a dismal 10 percent, despite the widespread availability of CPR and AED classes. Chances of survival drop by about 10 percent with each minute that passes without CPR and defibrillation, so survival rates for patients that get shocked six minutes or more after arresting are very low.

Over one million AEDs are available in public buildings — from airports to schools. Yet, as the researchers observed, “they’re not subject to the same FDA regulations as implantable medical devices, it’s unclear exactly where all the devices are, and whether they’re in places where people are most likely to suffer cardiac arrests.” This study looked at whether AED and cardiac arrest victim locations matched up.

Informing the public about the location of these devices is a large part of the challenge. ”Much too much time is wasted trying to find one, senior author Raina Merchant, MD, MS, an assistant professor of Emergency Medicine, said in a press release. Those seconds and minutes are often the difference between life and death.

Over a decade ago, the American Heart Association noted that emergency medical personnel rarely arrive on scene within the critical five-minute window needed to save most lives. Therefore, community training of CPR and AED should augment emergency services until professional help arrives.

Obviously, knowing how to use an AED properly is important, and most devices now include written or even audio instructions. However, none of  this is of any use if a potential rescuer cannot locate the device, or if it’s stored too far away to be useful.

The Penn researchers conducted the “MyHeartMap Challenge”, a crowd sourcing contest that asked Philadelphians to use a special smartphone app to find and map the locations of all of the city’s AEDs. More than 1,500 AEDs in 800 separate buildings were found and tagged. That information will go into a new mobile app to help bystanders easily locate the nearest AED during an emergency.

Additionally, 9-1-1 operators will have these locations available on their computers to help Samaritans find the nearest device as quickly as possible.

This project needs replication in every city, town, and community in the U.S. Perhaps even take it one step further and attach an emergency locator beacon right to the AED location; a user could activate a mobile app that will direct him or her to the exact spot – something that may help to shave crucial time off the process when someone is in an unfamiliar building.

The residents of Philadelphia will surely benefit from this study. It seems to me that the FDA needs to take another look at its AED policy. It’s time for them to provide incentives — or perhaps even mandate if necessary — that other localities map and provide easy access to AED locations too.

There has been some controversy over these devices — the FDA site lists a number of product recalls over the past several years. However an External Defibrillator Improvement Initiative is underway  including a new path to design and engineering best practices.

I just hope they also include best practices to get these devices into the hands of the nearest citizen rescuers.

Follow Liz on Twitter @lseegert and check out her latest article on Women.com –  Your Girlfriends are Good for Your Health

CHMP Senior Fellow and journalist Liz Seegert’s latest article for women.com, ‘U.N. Releases New Data on Premature Births – Many Preterm Births are Preventable;  U.S. Lags Many Other Developed Countries”. See her other blog posts on the digital divide and older adults. You can follow Liz on Twitter (@lseegert).

Liz Seegert

CHMP Senior Fellow and journalist Liz Seegert’s latest writings include a piece on cadmium and breast cancer for women.com and another on “Ethnic Elders Online” for New America Media. The latter is becoming a specialized focus for Liz. See her other blog posts on the digital divide and older adults.

“Aging in place” was a term used repeatedly at last week’s American Society on Aging Conference in Washington, DC. Every expert I spoke with offered a slightly different perspective on exactly what that means. However, all agreed that it is today’s technology that allows many more seniors to do so, and for a longer time.

One source describes it as “a concept where seniors continue to live at home or with a family regardless of their mental and physical decline. This concept requires resources like in-home caregivers”. An AARP Survey found that nearly 90 percent of seniors (65+) want to stay in their own homes for as long as possible; 80 percent don’t think they will ever live elsewhere.

In a previous blog post, I discussed technology ‘s major role in today’s caregiving. Without it, many older people would be forced to move, to access necessary health services. Some of these technology products and services have actually been around for some time as telehealth tools. According to The Health Resources and Services Administration (HRSA) telehealth uses electronic information and telecommunications technologies to support long-distance clinical health care, patient and professional health-related education, public health and health administration. This might encompass technologies from videoconferencing to streaming media to a web portal.

With a nod towards consumers, laptop computers, and families scattered around the country, telehealth still embraces use of electronic information and telecommunications technologies, but it’s now something you and I — just ordinary folks with aging parents — can regularly access and use. Remote home monitoring is just one example of how health technology has evolved into an everyday consumer product.

It’s gone from sending pacemaker data by phone and “virtual” doctor visits to a full-blown, user-friendly motion detector system hooked into a computer and programmed to call or text a loved one in specific situations. Activity can be monitored from afar – software is able to analyze everything from “did mom leave the stove on?” to “did dad take his medication this morning?” It sounds a bit “big brother-ish” but it’s an example of adaptive and innovative technology use to ensure that a senior can remain at home.

Monitoring of chronic conditions and potential for falls– a major source of disability, injury, and death among seniors — also allows aging in place to continue. This is great news for many seniors. Not so great news for many others.

All this technology comes at a price. Set up fees can range from a few hundred to a few thousand dollars, depending on the equipment, needs, scope, and health issues. Then there are monthly subscription fees — one company said their service averaged around $99 per month. Since many seniors are on a fixed income, it probably falls to adult children to shoulder the costs. CMS reimbursement is unlikely for most equipment and services. So what’s a poor family to do?

Low income seniors and families face the same aging in place issues that the middle income and wealthy do. Only the $99 per month is probably not in the budget; nor is the thousand-dollar set up fee. Aging in place technology has been shown to reduce health costs, improve seniors’ mental health, and provide an unquantifiable benefit of peace of mind for adult children. It can also help to spot early warning signs of more serious conditions, like progression of heart disease or Alzheimer’s.

For low-income seniors, many of whom are also homebound, there is no “quick fix” solution. There’s no power button to push, link to click, or data to transmit. This group of seniors age in place without a technology safety net. Yet another schism in digital divide.

At the American Society on Aging (ASA) conference in Washington DC, the mantra among many speakers was the same: technology’s role in caregiving is vital, and it’s growing.

Experts agree that to manage our ever-increasing senior population, they need to get wired – to access and learn how to use computers, email, social networking, and health information. To effectively do so, their tech literacy and comfort level must be raised. Most experts at the ASA conference agreed that accessibility and usability are two major barriers to overcome; without it, an entire population segment will be left out.

Flickr Creative Commons | matulio |

From looking up health information to Skyping with the grandchildren, to participating in social networks, going digital has many quality of life benefits. It also helps to improve cognitive function, memory, and reduce depression.

This is true not only for traditional computer use, but for other senior-focused technology as well. Entire industries are popping up to help seniors and caregivers better manage their health, improve communication, enhance literacy, and give adult children peace of mind about their loved ones’ health, safety, and quality of life.

I attended several presentations that highlighted innovative products such as watches to monitor vital signs, computers with touch screens, large type, and simple instructions, and sensors around the home to track movement, or lack of it.

These are good ideas that can certainly enhance well-being, and give adult children a sense of relief about their parents’ health. There’s only one problem with technology — it costs money. From equipment to setup to broadband access, technology doesn’t come cheaply. While families in middle to upper socioeconimic groups may be able to afford the setup and monthly fees; what wasn’t addressed, at least until I asked the question, was what is being done to help low income seniors and families?

The seniors that need these tools most – disadvantaged, homebound, low income, ethnic elders – seem to be outside of the target.

iPads may be a great way for seniors to get online, and FaceTime a wonderful tool to see the grandkids, but many seniors cite cost as one of the major barrier to technology adoption. For poor seniors that are home bound, the situation is even more precarious. Broadband fees are likely not part of their fixed-income budget. What is being done to help them access and adapt to technology — something that is almost an imperative in today’s wired world?

I also learned about several innovative pilot programs to help seniors learn computing skills, as well as efforts to address the needs of elderly that are aging in place. Many local elder service agencies have partnered with businesses, universities, and non-profits to set up and implement classes at senior centers and libraries. New products and services are available or in the pipeline to boost safety, security, and health management. I heard almost nothing about those elderly that are on the fringes.

We need to keep asking about them, and not stop until there are policies and programs in place to address their needs too.

Picture this: a female student at Georgetown Law School, already highly a highly accomplished advocate for women’s rights, speaks out in favor of mandated private insurance coverage for birth control, even by religious institutions. Sandra Fluke was testifying before congressional Democrats – not waving protest signs, not making a spectacle of herself, just speaking her mind, as our First Amendment allows her to do.

Enter one ultra conservative, controversial, and thin-line-walking  radio talk show host. Ignoring the basic facts, Rush Limbaugh proceeds with an angry, highly charged, personal attack on Fluke – calling her “slut” and “prostitute” among other names. All because she spoke out in favor of a particular policy supporting a woman’s reproductive choices.

Within minutes, news of Limbuaugh’s rant was all over Twitter, Facebook, and other social media sites. As they had in the in other recent situations where women’s rights were under attack, feminists, activists, and others of both genders who felt compelled to get involved, blasted Limbaugh for his offensive and highly inappropriate comments. Protesters not only targeted him and urged that his show be shut down , but also targeted the advertisers – big names like AOL, ProFlowers, and Quicken Loans, among others.

It worked. As of Monday, 12 advertisers had pulled their spots and two radio stations had dumped the show.  Several more said they planned to do the same.

This almost instant response via social media to real or perceived threats to women’s rights should not be a surprise – not after the swift action taken against the Susan G. Koman Foundation when they pulled funding from Planned Parenthood  just a couple of months ago. Did Rush or his producers miss this story? Although Limbaugh did eventually apologize for his remarks, the damage has been done.. Maybe this controversial figure will pause before he spouts such distasteful comments and or puts his foot in it again. One can only hope it’s a lesson learned.

Love him or hate him, Rush Limbaugh has the same First Amendment right to speak his mind as Sandra Fluke, or you, or I do. However, there is a very clear line between expressing an opposing point of view, especially as a public figure, and calling a 30 year-old woman vile names for respectfully stating her opinion.

The world now moves in nanoseconds. No sooner had the comment been made then hashtags started appearing on the Twitter timeline, and petitions started making the rounds on Facebook. There are those out there that may still think social media is a passing phase. They underestimate its power at their own risk.

News of the Susan G. Komen Foundation’s decision – and quick reversal – to cut off funding to Planned Parenthood was a textbook case of the power of social media. Tweet after tweet, post after post on Facebook, the blogosphere, You Tube, reader comments on hundreds of message boards, discussion groups, chat rooms – almost every type of social media tool available was a delivery channel for emotional advocacy of the two organizations.

The New York Times reported that by week’s end, some 1.3 million tweets relating to the funding issue had been sent. Facebook users by the thousands shared links declaring “I Still Stand with Planned Parenthood.” or passed along the message “Don’t Throw Planned Parenthood Under the Bus.”

One website that tracks Facebook estimated some 20 posts per minute were made for and against the two organizations. Planned Parenthood advocates charged that the decision was based on politics and increased pressure by staunch conservatives. Komen pointed to a policy that negated funding for organizations that were under investigation. Many Komen supporters, however, including grassroots affiliates, strongly disagreed with the organization’s stand. Supporters were angered that breast cancer screening was becoming such as sectarian issue.

The Facebook posts I saw last week communicated a sense of outrage. Planned Parenthood provides breast cancer screening services for low-income and minority women – those that are often most vulnerable and least able to obtain quality care. It was more than a so-called “pro-choice” vs. “pro-life” argument. The broad support shown by so many people, across multiple social media platforms was a clear statement that women’s health issues matter.

Online users on both sides of the issue, who had never considered themselves activists,  joined in this virtual conflagration; messages flew back and forth so fast that it was hard to keep up at times. It was really amazing to watch all of the activity unfold in real time. Many who commented also followed up with financial donations to these organizations; Planned Parenthood reported they raised over $3 million in just a few days, well beyond the roughly $700K they would have lost from Komen. Big names like the Fikes Foundation and New York Mayor Michael Bloomberg made news by pledging substantial financial support.

After just a few days of unrelenting criticism that even reached into Congress, Komen did an about face. Planned Parenthood’s current funding was reinstated and the organization will be eligible for future grant considerations. Once again, social media buzzed loudly with opinions on the news — did Komen executives “cave in” as conservatives charge, or was the online noise so overwhelming that they had no other option?

The Komen Foundation will be dealing with the fallout from this incident for quite some time. It is a real-time case study of social media’s effectiveness. Twitter, Facebook, and other Web 2.0 tools have again shown their value – helping to bring down dictators, overthrow governments, keep people connected during natural disasters.. as well as PR disasters generated by organizations that still underestimate their noise.

This weekend, my husband and I finally sat down to review advance health directives. It’s something we should have done years ago, but kept putting off. No one likes to confront his or her own mortality. Or what would happen if….

Discussing living wills and health proxies with your spouse and family may be one of the most vital conversations you will ever have. Yet, it seems my husband and I are not the only ones putting off this task – a 2011 poll conducted by the Associated Press- LifeGoesStrong showed that 64 percent of baby boomers (b. 1946-1964) and 70 percent of all US adults do not have a living will, health proxy or other advance directive. A search of current media stories on this topic showed a similar lack of emphasis.

A health proxy is a necessity in today’s complex health environment. It gives a person of your choosing (your agent) the authority to make specific care decisions on your behalf, if you are unable to do so. This may encompass anything from surgery, to medication, to a do-not-resuscitate (DNR) order. Medical practitioners are obligated to follow those instructions.

A living will spells out your general wishes regarding your health care. For example, you might state something like “I do not wish to be kept alive by artificial means, such as a feeding tube,” or “I only wish to have medication to ease pain and suffering.” This points physicians and family in the right direction about care, and helps avoid conflicts about your treatment, if you are unable to express your own desires.

The state of New York provides free downloadable health proxies and living wills. As an aside, it was good to note that health literacy was factored into the writing – medical terms are explained in plain language – and the what, how, and why of these documents are laid out step by step.

If you live outside of New York, check with the health department in your state for current information and requirements – this is especially important if you reside in more than one state during the year. A lawyer is not necessary, although it may be wise to have a copy of your directive and proxy on file with him or her. The agent, and a backup, should also have copies of your proxy and living will.

This was one of the most difficult – yet totally necessary — conversations my husband and I have ever had. The only one that may be harder is having it with our family, especially our 20-year old. Yet should the time come when these directives are needed, I know that our healthcare decisions will be made according to our wishes, not someone else’s.

Senior Fellow Liz Seegert is a healthcare journalist, writer, and consultant with a focus on social and human welfare.

This time of the year inevitably generates a plethora of “top 10” lists – the media’s bid to condense and summarize the “best of” or “worst of” [insert your topic here]. Health care, of course, is no different. A quick Google search of “top 10 health stories 2011” yielded a staggering two million plus results.  Let’s get serious, folks.

Can there really be only ten health stories that are worthy enough to talk about? Or just one that rises to the top? Lists like these are so subjective.  Boiling down this tumultuous year in the world of health into less than a dozen highlights all depends on perspective.

WebMD points to the changes in the food pyramid as a key issue, as well as changes in prostate cancer screeing guidelines and the widespread listeria outbreak from contaminated canteloupes. Fox News leaned more towards the sensational – asking if multivitamins were killing us, touting the ability to turn brown eyes blue with a laser, and reporting that baby shampoo may be toxic. Nothing like scaring millions of parents in one fell swoop.

The Atlantic Magazine focused on controversies – do cell phones harm people or not? Is coffee/red wine/chocolate good or bad for you? What about prostate exams? Or the fiery reaction provoked by HHS Secretary Sebelius’ decision to overturn the FDA’s proposal allowing the morning-after contraceptive Plan B to be sold over the counter? How about the links between autism and vaccines?

If you’re more of a policy wonk, then maybe your pick is the administration’s recent decision to allow states to determine minimum insurance benefits under health reform. Boston.com stretched their list to 15 top stories – including the full first face transplant, the resignation of Don Berwick, and a new way to look at the onset of Alzheimer’s disease.  If you’re a baby boomer, then perhaps 50+ Magazine’s selections are more your speed – suicide prevention, stem cells, and Steve Jobs’s death were all high on this list.

Of course, this pre-election season could not go by without the candidates weighing in. Like when Michelle Bachman claimed that vaccines causes mental retardation. Or Mitt Romney tried to distance himself from his own Health Reform initiative when he was governor of Massachusetts. Newt Gingrich seemed to play both sides, as Salon magazine pointed out last week, while Ron Paul remained consistent in his libertarian views about the free market being the best option to control health costs.

However, perhaps the most chilling story that appeared on list after list is the growing childhood obesity epidemic in this country. As long as fast food chains, junk food, and soda manufacturers are allowed to aggressively market to children, it is unfortunately going to continue to be a top story well beyond 2012.  If this problem isn’t brought under control soon, none of these other health stories will really matter.

Liz Seegert

This post originally appeared on The Human Factor, a health blog written and edited by Senior Fellow Liz Seegert, MA. 

What if it was your daughter?

Suppose your 16 year-old daughter was sexually active with her boyfriend and his condom broke?  Would you want her to be able to buy the Plan B emergency contraceptive right away, or should she first have to wait for a doctor’s visit to get a prescription – by which time it might be too late to use it anyway.

Currently, no one under 17 can buy the Plan B pill from a pharmacist without a prescription; young women must show proof of age. The FDA seemed about to lift that restriction and allow it to be sold openly, put on a drugstore shelf just like condoms are. HHS Secretary Kathleen Sebelius’ surprisingly overruled the agency, when she put the brakes on the FDA’s plan.  Her rationale: girls younger than 17 are not be cognitively developed enough to make an informed decision without additional input from a doctor.

It’s too bad Sectretary Sebellius seems to have so little faith in 15 or 16 year olds. Who by the way, I find are much more knowledgeable and savvy about sex at that age than many of their parents were. These are kids that grew up with the Internet. They don’t necessarily wait to ask “the question” to their parents. They Google it instead.

Taking this option out from behind the pharmacist’s counter would have been a good move in helping to prevent unwanted pregnancies. I’m not advocating that young teens have sex; but let’s face reality: many do. Many are also unprepared for potential consequences.  Plan B isn’t about “just say no instead.” It’s about “It happened. Now what do I do?” For now, the pill remains behind the counter, and the restrictions remain intact.

If I had a teen daughter who was intimate with her boyfriend, I would much rather know that she has ready, easy access to emergency birth control than not take advantage of this option at all because of age restrictions.