The Disruptive Women in Health Care blog continually aims to encourage discussion and debate among readers about emerging issues and topics in the health care world. Historically, one of the ways that we have done that is through our weekly round-ups – that is, posts containing summaries and links to some of the big stories in health care news for the given week, with some original commentary and content sprinkled in as well. The way we see it, there is just too much happening in this burgeoning industry; it’s hard to keep up, especially when you’re busy disrupting and making headlines in the health care world yourselves. We know the weekly round-ups have been on hiatus for a while, but are happy to report that they’re finally making a comeback. Each week, we’ll be gathering some of the biggest health care news you can use from at home and abroad for posting on Wednesdays. Feel free to comment on what’s included and send us some links to articles to be considered for next week!

Has your week been too disruptive for you to keep up with the news?  Disruptive Women are on the case!  Here is this week’s round up of some of the most pressing issues here in America and around the world.

Here at Home:

Thanks to a provision of the Affordable Care Act (ACA), women are now able to receive free birth control, but only if it’s prescribed.  The New York Times explains how Catholic Colleges are using this loophole to combat contraception.

And, speaking of the Catholic Church and the ACA, USA Today says that Obama’s decision on Friday not to expand the conscience exemption to include religious institutions has been met with outrage from Church leaders and parishioners.

Remember that moment of panic you had when the swine flu epidemic came to the United States?  CBS News reports that swine flu numbers are rising again in Mexico. Will the US be next?

Susan G. Komen for the Cure, the nation’s leading breast cancer charity, announced Tuesday that it is halting its partnership with Planned Parenthood (per NPR) – a controversial decision that ignited a backlash from some of its supporters.

Here’s one perspective on Komen’s decision. What do you think? Will this impact your decision in giving donating to Komen, or another breast cancer non-profit in the future?

Sick? Took a sick day?  Is that enough of a reason for you to wind up unemployed?  HuffPo explains how an issue as simple as recovery from the flu has reached the Supreme Court.

With nearly two million women lacking health insurance and a quarter of a million unplanned pregnancies per year, Florida has a lot of challenges in terms of women’s healthcare.  Here’s what the state is doing to try and move ahead.

Around the World:

Brazil is calling for a registration of all pregnant women.  What does this mean for a woman’s right to choose within Brazil?

Japan’s population is shrinking. As more women choose a career over family, Japan faces declining birth rates. Could the United States be next?  ABC News takes a look.

Check back each week for the latest health care news!

Millions of Americans disapprove of the Affordable Care Act without understanding what the act aims to accomplish or how it works.  Dr. Jonathan Gruber’s book “Health Care Reform:  What It Is, Why It’s Necessary, How It Works” breaks down the individual components of the act in order to give Americans a greater understanding of what all it includes and how its provisions will affect their daily lives.  Gruber discussed the book, ACA and the future of health care reform in the United States with an audience at Disruptive Women in Washington, DC last night.

Continue reading here…

I know, I know it’s October…but hey, we are disruptive so celebrating on the exact day seems so well, ordinary.  And the past three years have been anything but ordinary.  We all had something to say about the new health reform debate and ultimate passage.  We still have much to say about the new law, as well as a multitude of other topics.

One area that I have been thinking a lot about is the exploding area of mhealth (mobile health), remote monitoring, and telehealth.  Technology alone is not the answer of course.  But technology, coupled with innovative care delivery models (think health reform), and patients, caregivers and clinicians more comfortable with smartphones, apps, data sharing and online connectivity have all contributed to a new framework of health and wellness.  Aging in Place, staying connected, eICUs, PHRs and EHRs.  Exciting stuff.

But, like most solutions in health care, success must look beyond the health sector.  Here’s what I mean by that: staying healthy can’t just take place in a health setting or even in your home.  Maintaining your health and wellness or managing your chronic disease or disability requires a connection where ever you are — in other words, Health In Place.  Young people with epilepsy and diabetes still attend school, go on vacation and use public transportation.  Elderly individuals aging in place still travel to visit gradnchildren. And, adults maintaining exercise and nutrition regimens who travel for work need to stay connected to maintain wellness.  The Health In Place concept takes this broad view and will be bringing together thought leaders from not only the health field, but the telecom, travel, automobile and real estate sectors as well. 

The organizers of the 2011 mHealth Summit were so taken with this idea that they invited Disruptive Women to launch the Health In Place or HIP initiative with a reception on December 6th–we couldn’t be more thrilled or more flattered. So SAVE THE DATE:

Health In Place (HIP)™ — Disruptive Women in Health Care is Launching a New Initiative

Tuesday, December 6, 2011, 5:00–7:00 PM
Location: Pose Ultra Lounge & Nightclub–at the Gaylord Hotel in National Harbor (Washington DC)

Overview: The concept of Health In Place™ is built around the idea that our homes are more than just homes, our offices are more than just workplaces, our schools are more than just places of learning, and even our cars are more than just modes of transportation. Thanks to wireless communications and emerging technologies, each of these venues has become potential health and wellness centers or HIP. No matter where we are or what we’re doing, we can be protecting and enhancing our well-being. For this facet of 21st century health care to achieve its full potential — for more Americans to have the tools to link to their caregivers, to protect against and manage illness, while monitoring their well-being — a number of public policy issues are involved, cutting across multiple disciplines from health care regulations and benefit structures to tax policy to technology incentives. That’s why Amplify Public Affairs and the Disruptive Women in Health Care® blog (along with our media partenr, The Hill) have formed the Health In Place™ Initiative — to bring together policymakers and change agents from multiple industries.

 Please join us as we unveil this new initiative.

 Speakers:

• Robin Strongin, President & CEO, Amplify Public Affairs & Creator, Disruptive Women in Health Care — Moderator
• John Marttila, President, Marttila Strategies (a national polling expert)
• John C. (Jack) Lewin, MD, Chief Executive Officer, American College of Cardiology
• Pamela Cipriano, PhD, RN, NEA-BC, FAAN, Professor, University of Virginia School of Nursing, Editor-in-Chief, American Nurse Today, 2010-11 Institute of Medicine Nurse Scholar-In-Residence (and a Disruptive Woman blogger)
• Halle Tecco, Founder & Managing Director of Rock Health (and a Disruptive Woman blogger)

Stay tuned for more information.  And by all means, please come out on December 6th and celebrate with us.

At three years of age, we are not only Disruptive, we are also HIP.

But there was another line in the blockbuster movie that moved me even more. I heard it and the heavens seemed to open. The light bulb came on.

Hilly Holbrook’s new maid is $75 short on one of the college tuitions for her twin sons and asks Hilly and her husband for a loan so she doesn’t have to choose which son should go to college. Doing the ‘Christian thing,’ Hilly refuses, “God does not give charity to those who are well and able.”

Twelve simple words from a fictional 1960’s character summed up our nation’s current political will regarding the poor. And allow me to condense this into just one word: selfishness.

We movie-goers were quick to see the bigotry in Hilly’s statement. The maid and her husband had been saving money from their meager wages for a long time and she wasn’t seeking a hand-out, but a loan she would pay off with her thankless labor. But I was also quick to see the hipocracy in those of us who identify ourselves as Christians regarding the poor–many like this maid are in temporarily tight spots by no fault of their own. I was convicted by the thought that a selfish Christian is just as much of an oxymoron as a Christian murderer.

We use the word Christian so loosely nowadays, especially in politics. Calling ourselves Christians is not just the politically sexy thing to do. It is bearing the responsibility to personify the totality of God’s word and value every stage of every life, even the poor. Perhaps our selfishness is rooted in fear, more specifically, fear of shortage. We are so afraid that assistance to the poor robs us, but the Bible is clear that it is better to give than to receive (Acts 20:35) and we will never lack giving to the poor (Proverbs 28:27). Now I’m not suggesting that Christians are obligated to give to any and everybody. We must be good stewards over what we’ve been blessed with and use wisdom, but we must never forget we have been blessed with what we are stewards over. None of it truly belongs to us.

What makes giving complicated is when the poor is undeserving for reasons we determine in our own minds. With the issue of Medicaid, for example, we are quick to point to the rare cases of system defrauders. But for every story of fraud, there are at least nine stories of genuine need.

The Institute of Medicine, the trusted, non-political council advising the nation on ways to improve health, recently released “The Healthcare Imperative Report” on how to lower health care costs and improve outcomes. The Institute thoroughly studied excess costs in our health care system and identified six domains of excess spending: unnecessary services, inefficiently delivered services, excess administrative costs, prices that are too high, missed prevention opportunities and fraud. Want to guess how much waste is due to fraud? Less than you think. Only 10 percent. And that figure includes fraud at the hands of payers, clinicians and patients, so patient fraud represents only a fraction of health care waste.

I got ticked off… Oh, pardon me… I was greatly disturbed this week while speaking with a cousin who attends one of Columbia, SC’s most prominent churches. After the August 5-6, SC Mission 2011: Midlands event that served more than 2,000 uninsured from around and outside the state, a water cooler conversation at the church included appalling accounts of some people in line for services using iPhones. The nerve of those beggars!

Thankfully, my cousin was quick and correct to point out that many of those in line were among the working poor. SC Mission 2010 in Greenville, SC, for example, drew 1,200 of the state’s underserved to the Carolina First Center. Forty-four percent were employed, tax-paying citizens. My co-worker even received a call from an area city councilman inquiring if his uninsured family of four (wife, two teenagers and himself) could come for services at the Midlands event at the Carolina Coliseum.

These are realities, but we citizens have made it too easy for our elected officials to turn a blind eye and deaf ear. In an attempt to heighten awareness of these realities to policy-makers, the South Carolina Hospital Association sent personal invitations to Mission 2011 to more than 400 elected officials in federal, state and local government. Guess how many showed up? Two. Republican SC House Representative Todd Atwater who also serves as President of the South Carolina Medical Association and volunteered at Mission, and Democratic SC House Representative Leon Howard. Two, I said! One Republican. One Democrat. Zero from the Tea Party. Zero Independents. Zero from local government. Zero from the federal government. Raise your index finger, then your middle finger. Two. They could have at least followed the lead of Columbia, SC Mayor Steve Benjamin who knew he’d be out of town. Mayor Benjamin marketed the event through e-mail and social media.

Maybe if more of our officials had seen the lines of men, women and children forming as early as 10 am the day before the Midlands event began, those camping on the concrete outside the Carolina Coliseum, and the countless people who were turned away due to maxed capacity, these and other social ills would not plague our community as much because policy-makers would be more prone to do the true ‘Christian thing’ and care.

How do you feel about health-related social networking? Would you join an online health program? What concerns – privacy, quality of service, etc. – do you think this presents?

Read the full text of the Healthcare IT News post here: http://healthcareitnews.com/news/social-media-tools-may-reduce-attrition-online-health-programs

Responsibilities include, but are not limited to:
-  Serving as a member of the Disruptive Women editorial team
- Assisting in the day-to-day operations of one of the country’s top-rated health policy blogs
- Reporting and writing for the blog – conducting interviews, covering events, writing posts for publish (with byline), etc.
- Assisting the blog editors in overseeing the editorial content of the blog – copy editing, fact checking, etc.
- Maintaining the blog’s resource sections – including the calendar, multimedia and about tabs
- Assisting in the blog’s social media outreach/communications efforts
- Promoting and providing logistical support for blog-sponsored events

Schedule and Compensation:
- 10-15 hours/week (7 in office, 3-8 remotely)
- Flexible hours
- This is an unpaid internship
- Class credit available on a conditional basis
Note: The office is located in downtown DC. Applications are limited to those in the DC metro area. We regret that we are unable to provide compensation for travel expenses to and from the office.

Qualifications:
- Competency in Microsoft applications, including Word, Excel and Powerpoint
- Exceptional organizational and communication skills
- Familiarity with blogging/online reporting
- Experience using wide array of social media platforms, including but not limited to: Twitter, Facebook Pages, LinkedIn, YouTube, etc.
- Must be able to work effectively and independently as an editorial team member
- Must be precise, alert and attentive to details

Interested? Email a cover letter (detailing availability), resume and relevant writing sample to hditto (at) amplifypublicaffairs (dot) net.

The new apps (FaceDecide & BreastDecide) come in addition to their six existing Orthopedic patient education apps — including an orthopedic app called ShoulderDecide, which was recently reviewed by iMedicalApps.com. While these latest apps are obviously less focused on chronic medical conditions than the original six, they do call attention to just how great the extent of the potential for mHealth seems to be.

In the next few weeks, Orca MD will be rolling out additional features, including an introduction and some infographics dealing with Orthopedic & Cosmetic Surgery. To keep up with these releases, check out their apps, and more, ‘Follow’ @OrcaMD on Twitter, ‘Like’ OrcaMD on Facebook  or check out their YouTube Channel.

Health-related smartphone apps are a relatively recent innovation, and there is no telling what will come. What do you think about the BreastDecide and FaceDecide apps? Would you download them? As the field of mhealth begins to evolve and mature, how do you think apps like this will fare? Do you think these present privacy concerns for users?

But if you’re like me and also believe that laughter is the best remedy for any ailment (including a case of what my friends have appropriately dubbed the “Valentine’s Day Blues”), I’ve got you covered [well, CBS Cares does but I’m the one writing about it so I’ll take some credit!]. Not only are their Valentine’s-themed PSAs informative, culturally relevant and just racy enough to keep your finger off the fast forward button on your DVR remote, they are downright hilarious – guaranteed to evoke a healthy laugh from even a “Valentine’s Day Grinch” like myself.

The PSAs are part of CBS Cares’ Valentine’s Day Campaign on Testicular Cancer. Along with airing the PSAs – which encourage men to “do something special for [their] woman on Valentine’s Day” by examining themselves for testicular cancer, because “this Valentine’s Day, why give a diamond when you can give the family jewels?” – the campaign (just one of the several currently being promoted by CBS Cares) offers additional information, resources and social media tools designed to both educate the public and get the word out about testicular cancer prevention. Plus, if you’re like me and detest Valentine’s Day, how can you not support any campaign encouraging your man to forgo the traditional V-Day gifts?! (I recognize that I may be alone on this one.)

CBS Cares is a lot bigger than just this “Family Jewels” bit, though. Created by CBS Television Network in 2000, the CBS Cares campaign is a commitment to use CBS talent to create PSAs promoting a variety of issues — from child abuse to menopause, identity theft to epilepsy and everything in between – in need of a platform. Though it began as just a collection of 15 second or so PSAs, CBS Cares has evolved into so much more. As their website explains, “With Network PSAs as its fulcrum, CBS Cares has grown into a multimedia project involving many areas and talents at CBS: Entertainment, News, Sports, Digital Media, Radio, CBS Outdoor, Communications and Marketing.” Some are themed around a holiday and put into circulation for a set period of time (like the Valentine’s Day testicular cancer one or like this Christmas-themed one encouraging women to get regular pap smears), while others are more general and thus relevant for several months or years (like this one on getting a regular colonoscopy or this one on supporting our troops). There are some “core” issues that the network continues to promote, but staff are always on the lookout for new, underserved causes that could be bettered through a CBS Cares campaign. As time has gone on, the network has not only increased the scope of these mini-campaigns but also their monetary commitment. In 2009 alone, the network scheduled more than $200 million worth of public service announcements. While all of the creative work (talent, copy, production, etc.) is done in-house, CBS Cares notes that “The starting point for every PSA–before scripting begins–is close consultation with experts on the frontline of each field to learn what messages they feel are the most important to convey.”

So, whether you are like me or you are a Valentine’s Day enthusiast who has been counting down the days, shopping for the perfect dress, tearing up at the commercials and walking around relishing in what you know for certain is love in the air (don’t worry, I’m not here to judge), the PSAs are worth a view (and definitely worth forwarding along  if you are like me and lucky enough to have someone special in your life, Valentine’s Day enthusiast or [most decidedly] not).

From all of the Disruptive Women in Health Care, Happy Valentine’s Day!

L to R: Julie Murchinson, Robin Strongin, Indu Subaiya, Fran McMahon

You may be asking what the term Health 2.0 means and luckily for you Indu Subaiya Co-Founder of Health 2.0 provided us with an answer. Health 2.0 applies the same social networks and user-generated focus as Web 2.0 (which has been around since 2003) to the world of health care. It began as a consumer-driven movement with providers becoming involved a bit later. More recently the concept has grown as a result of its partnership with health care reform. Another noteworthy aspect is its ability to foster data-driven decision-making. Currently, there are about 1000 companies actively engaged in Health 2.0.

Bottom Line: Health 2.0 gives you (the patient, caregiver, provider, payer) the tools to be able to get the information to make better decisions.

To better illustrate Health 2.0, the panelists discussed their companies’ developments. Dr. Marlene Beggelman founded Enhanced Medical Decisions which developed an online medical solution that uses “natural language” search technology, to enable users to quickly and easily find accurate information on drug interactions and reactions.. Linda Von Schweber the Co-Founder of Surveyor Health discussed their software’s ability to create an online medicine cabinet for consumers where they can learn the various side effects and interactions of the drugs they are taking. Eliza Founder and President Alexandra Drane detailed the personalized voice-based service they developed that helps consumers make better health care decisions. All of these technologies are innovative, put consumers in the driver’s seat and support efficient, safe and quality health care.

Julie Murchinson the Managing Director of Manatt Health Solutions and the Founder of Health 2.0 Accelerator detailed a workshop that took place at yesterday’s Health 2.0 Conference during which federal government representatives interacted with the companies on how they could address chronic disease, vulnerable populations and personal health management. Robin Strongin noted how critical it is for the Inside-the-Beltway health information technology and health reform decision makers to be engaging with the Health 2.0 developers and innovators as an important step towards insuring meaningful use – for patients.

The most important take-away message from this morning’s breakfast: Health 2.0 technologies empower consumers to get involved and take control of their health care; they provide the information to give patients the courage to not only ask questions…but to push back and engage with their health provider when something just doesn’t seem right.

These opportunities came about largely from my use of networking on blogs and Twitter. I continue to be surprised and delighted by the people who reach out when I talk about things that interest me, and who offer to get me more involved in the conversation at these conferences. Once there, I become the pupil of every person I meet. But naturally, I tend to be one of the only students, if not the sole representative, at every conference I attend. I’m surrounded by very few peers.

The result of these conferences was the discovery of my mission: effecting a paradigm shift in the culture of health in this country. It’s the vision that keeps me committed to writing, studying, and applying to medical school. But when I go back to class, and try to talk to my colleagues about what I’ve learned, I have trouble finding anyone interested in listening. It’s clear that the lack of a shared experience precludes shared enthusiasm. Inevitably, my professors are the only ones willing to engage in conversation about what drives me–and I go right back to being a solitary pupil. Broaching topics such as care delivery with my pre-med colleagues is often met with blank stares or flippant remarks about helping people being a means to a financial end. Additionally (and I hesitate to generalize), but in my experience, it seems that the women I encounter in my classes are difficult to engage about larger matters of vision. Older generations of feminists remember a time where young women were afraid to show their intelligence and competence in conversations that go beyond daily life and relationship issues. Could this still be going on?

Of course, the internet gives me the ability to connect with passionate women and men of all ages who are as eager as I am to teach and learn. However, the absence of face-to-face interaction nags at me–savvy as I may be at building relationships in my social networks online, those professional relationships become the most meaningful and permanent only after meeting in person. All this leaves me in a sort of liminal space, somewhere between the students I spend time with every day and the mentors who show me what is possible.

So here’s an open question for Disruptive Women: How does one go about establishing a peer group, one that gathers like-minded young people (women, in particular)? With or without access to the internet, during college as well as later in life, how did you find the people who engaged you?

When a company follows capitalistic principles, the goal is to increase value by offering better services at a lower price. The company strives to improve their bottom line by offering more value than their competitor, in an effort to put their competitor out of business. Offering good customer service complements this strategy. In industries other than health care, the result is a benefit to the consumer: quality products and service at a lower price. Southwest Airlines, for example, employs a very effective social media presence. They respond to complaints tweeted by customers, which is has garnered the company praise in addition to a loyal customer base. But does this consumer-centered strategy translate to health care?

Mayo Clinic is held as a model for value in health care, but attributing their success to “consumerism” is off-base. The new media strategies being presented by health care institutions at SXSH essentially boiled down to damage control by tending to disgruntled Twitterers, and analysis of the types of complaints being registered. Though claiming to be influenced by social media mavens at Mayo’s Rochester flagship, the strategy is misguided and far removed. Mayo Clinic works because of a philosophy of care that puts the needs of the patients first—which does not equate to reactionary PR moves on social media sites. Absolutely nothing about their strategy distinguished it from other industries—and in the context of health care, replicating the strategy of Southwest Air and its ilk borders on insulting. Mayo Clinic avoids the noisy Twittersphere when addressing something as important as patient care; when a complaint is registered, that’s what their specialized center for patient service is for. Their Sharing Mayo Clinic blog allows a community of patients, staff, and families to form, which anticipates service problems before they even occur. This is the absolute obligation of companies in charge of delivering health care to a society.

My issue is also a philosophical one.

We all agree that a crucial part of reforming this system is expanding access to care, but new media strategies that are effective in other industries become empty gestures if used, unmodified, in health care. Consumers who can buy greater quantities of higher-quality goods reap the benefit from sellers’ efforts to compete. But what about those who can’t afford it no matter how cheap it gets? Southwest Air, in theory, is trying to put other airlines out of business by offering the best value. Are we trying to put hospitals that are struggling out of business? If you’re truly concerned for the health of the community—for social health—it seems those are the places that need more support, rather than be subjected to market forces.

Patients, on one level, are consumers in the sense that they deserve good service when they walk into a doctor’s office or hospital, but even that is a misnomer; responding to complaints and shortening the wait time is common civility, not a whole customer service strategy. Health is life, it is who you are—it is not something that is consumed, and referring to patients as “consumers” is careless. The PR departments of health institutions must not forget that it is the health of their “customers” that is most important, and are therefore obliged to take their social media initiatives a step further than companies not involved in the health care field. Want to strive for the success of Mayo Clinic? Drop Twitter and start focusing on people- and patient-centered care.

The following guest post is by Jennifer Smock, who is a Graduate Student, Masters of Public Health, at Purdue University as well as Assistant Project Manager, Purdue Homeland Security Institute, and Project Manager, Purdue Emergency Preparedness Office.

For the first time in history, we are able to listen to public’s concerns… well pretty much about everything!

Why is this important?

Major corporations such as Dell, Comcast, Pepsi, IBM, and Microsoft, care greatly about what people are saying on social media sites about their products.  You may have noticed this change in such Microsoft commercials (“Windows 7 was MY idea”), or Best Buy commercials (asking questions to a stadium full of employees).  Both implying they are listening and interacting with people to better serve their needs.  As a result, they have built trust with their consumers and are profiting because of it.

Who uses Twitter anyway?

More and more people every day.  In the fall of 2009, it was found that one in five internet users use Twitter or another service to share updates or to see updates about others, which significantly increased from one in ten in April 2009 (Pew Internet, 2009).  There has been a recent Twitter explosion growing from 2 million Twitter accounts in December of 2008 to 17 million May 2009 resulting in 83% increase, and an astonishing 3,000% increase from a year ago! (ComScore, 2009)

Ok ok… What does this have to do with healthcare?

Before putting out health messages, wouldn’t it be great to better understand what the current barriers and benefits people are already talking about using these informal channels?  This could displace rumors and fine tune messages without the time and effort of focus groups.  For instance, there is a current distrust in the H1N1 vaccine as recognized by the news media:

“Of all the big questions facing our country, there’s one in particular that touches us in an immediate and personal way. It involves the H1N1 flu vaccine … and for many perplexed Americans, the question comes down to this: is the vaccine really a healthy choice? Despite what we’ve heard from public health authorities, some Americans have their doubts.”

-CBS NEWS

In response to the recent change in way clinicians, public health practitioners, and lay-people obtain information, the Centers for Disease Control and Prevention (CDC) has recently introduced utilizing social media outlets to help communicate to the public.  These public health messages promote the seasonal and pandemic flu shots as the best weapon an individual has against contracting the flu.  This integration might have came a little too late.  Recent polls have shown a low rate of compliance with obtaining a flu shot for themselves and for their children.  Even though there has been many public health messages communicating the importance of the flu shot this season, 66% of adults surveyed said they will not receive the H1N1 flu shot, and even though children have an increased risk for complications, 45% of parents said they are not planning to get their child vaccinated (ABC News & Washington Post, 2009).

Bottom Line

The CDC is currently urging those in the healthcare field to integrate social media outlets to communicate to the populations they serve.  Listening and interacting with people will help build trust in all health messages.

At an event hosted by Ragan Communications, speakers from Mayo Clinic , Beth Israel Deaconess Medical Center, Operation Smile , Kaiser Permanente and others all came to share their experience jumping into the world. Each of us are exploring the opportunities that social media presents to us as communicators, while at the same time balancing the regulations within a fairly conservative industry. Concerns about protecting patient privacy and overcoming cultures that too often fear transparency were significant challenges for all.

It was great to hear from the organizations who are proactively exploring all that the Web 2.0 world has to offer. And I am glad I was able to share Kaiser Permanente’s journey with my friend and colleague, Dr. Ted Eytan by my side.

As Ted and I have shared here on Disruptive Women before, Kaiser Permanente was shocked into the world of social media. However, in the past couple of years, it has become central to all our public relations efforts. By coupling social media with other outreach strategies, we have built solid relationships with influentials throughout the industry who we often discover are speaking about us, without our involvement.

When we entered the social media space, we did so with the recognition that we had obligation to tell our story. What we didn’t understand at the time was that the more we told our story, the more others would come to understand it and begin to re-tell it for us. While it remains critical that we continue to proactively share our story, we now understand that the voices of those independent third-parties — our members, our employees, other influentials — re-telling it will always be more powerful.

A common reaction around the Web has been “Finally!” – with remarks like “This is NOT a Hoax!” and “Just in time for Web 3.0,” the FDA has set a date to start figuring out “how to deal with Web 2.0.” (NPR Health Blog).

But after the initial shock and sarcasm subsides, the potential significance of the FDA’s (albeit long overdue) move forward this week starts to sink in – this could result in the most significant set of regulations since the FDA’s guidelines for broadcast direct-to-consumer (DTC) advertising in the late 1990s. We’re talking industry-changing stuff here – or rather, industries-changing, because you can be sure that pharmaceutical companies, physicians, consumers, Internet and social media companies, the advertising and public relations industries, and everyone whose revenue includes online advertising are all major stakeholders in this public policy debate.

So what has the FDA highlighted as the key elements for discussion of this issue? (List below drawn from the 9/21/2009 FR notice)

1. For what online communications are manufacturers, packers, or distributors accountable?
   • (paraphrased) What communications and discussions should be considered “by, or on behalf of” versus independent of influence from these companies – and when and how should companies “disclose their involvementor influence,” particularly “on third-party sites”? Should different types of online media platforms and different intended audiences of these platforms be considered differently when addressing these questions – if so, how?
2. How can manufacturers, packers, or distributors fulfill regulatory requirements… in their Internet and social media promotion, particularly when using tools that are associated with space limitations and tools that allow for real-time communications (e.g., microblogs, mobile technology)?
   • (paraphrased) How should product information be presented on these platforms so that users have appropriate access to both risks and benefits?
3. What parameters should apply to the posting of corrective information on Web sites controlled by third parties?
4. When is the use of links appropriate?
   • (paraphrased) Should there be rules about the use of “links to and from Web sites,” including links to or from unbranded websites to or from clearly branded company websites? And what research and data exists about the click-rates in different contexts of users seeking information about medical products?
5. Questions specific to Internet adverse event reporting
   • (paraphrased) How are companies that are obliged to report adverse effects of products using online media tools, if at all, to monitor information about adverse effects of their products? Should these companies be obliged to monitor and/or report information from online communications concerning adverse effects of their products?

We – and the FDA – want to know what you think. What are your gut reactions to all of this – do you find anything particularly worrying, are there any potential outcomes you’re especially hoping for?

If you submit any comments to the FDA – and we hope you will – come by and tell us about it in our comment section here (and we promise to do the same). More information about the public hearing and submitting comments is available here.

This month, Disruptive Women welcomes Andre Blackman,

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

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

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

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

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

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

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

Sources:

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

Introducing h20tv!
Indu Subaiya, MD, MBA
Co-founder, Health 2.0

Blame it on election fever or my move to the filmmaking capital of the world, LA, but I was recently inspired, along with my amazing conference teammates, to create and launch h20tv, a video channel for Health 2.0. It has been apparent for a while now that we’re hearing a lot more from the community than just feedback on new technologies and we wanted a way to surface that.
While technology is still what we live and breathe most days, what’s been interesting is people’s responses to how technology is actually changing healthcare experiences or enabling new visions for change on many levels. Our work with the Center for Information Therapy on a joint conference and on the first h20tv video project has already surfaced many lively debates.

We’re now a few years into this Health 2.0 thing if you will and it’s not speculative anymore. There’ve been successes and failures, hard data and experiences we can all learn from. In the present context of healthcare reform, sure, the papers and blogs have been full of the punditry exchanging blows…we wanted to capture more of the dinner table conversations. Because there are some really good ideas out there and they’re not all from experts. And who is an expert in healthcare anyway? For more about that sidebar, see Great Debate #5 at the upcoming conference agenda.

So what do you get when you ask people what their 2 minute rants to the new administration would be about healthcare – not their long manifestos, just their biggest, burning issues? It’s fascinating to see what bubbles to the top. My Co-founder Matthew Holt talks about the need for a common social insurance pool, Dr. Thomas Barber of Kaiser Permanente tells us how web tools have decreased his office visits by more than 20%, Julie Murchinson of the Health 2.0 Accelerator talks about the promise of personalized health care, Robin Strongin of Amplify Public Affairs advocates for the consideration of broader life circumstances when providing healthcare including education, transportation etc. and healthcare consumer Julian Robinson describes how challenging it is to find a doctor in a new city… and that’s coming from a web-savvy 23 year old.

We want lots more voices. And we’ll string along select snippets for a little trailer to show at the upcoming conference. No this isn’t going to have perfect production quality – you’ll have to go to expensive agencies for scripted messages and bad background music for that. This is pure user-generated brainpower, the way we love it, straight up and unfiltered.

We don’t have a special in with the new administration, but we know we are part of a growing and diverse community of people who think and care deeply about improving the healthcare system. So we figure the word will eventually float over to the white house over these wild web airwaves. And now, here’s Julie to say more about this project in the context of the accelerator and what she’s seeing on the ground for health 2.0 companies trying to innovate and integrate with the healthcare system.

We the people want more out of health
Julie V. Murchinson, MBA
Managing Director, Manatt Health Solutions
Executive Director, Health 2.0 Accelerator

We are at a turning point in how we the people take part in our healthcare. Just as Facebook and Twitter have allowed people to connect and delve more deeply into each other’s everyday life, h20tv is amassing the power of the people to begin to weave together a story of what we want, our ideas about how to make it happen and, in some cases, desperate pleas to change the status quo. What is most interesting, however, is that many of the videos spell out a fairly simple desire – the personalization of health care – to allow citizens to play a larger role in their care and to have care more customized for each person. Sure, there are still several million Americans who aren’t yet racing to get a seat at their care-team table, but for those who are…why is it so hard to do something so seemingly simple?

Why can’t we jump on our iPhone to track our stomach pain until we realize that its getting increasingly worse, then be able to access some clinical information about treatment options that helps us find a clinician online we can consult with, who recommends a specialist close to work so we don’t have to take more time off, who sees us that day because health IT has improved his/her patient through-put, who sends an e-script to the pharmacy for pick-up on the way home, which launches a medication schedule with reminders to our iPhone to make sure we take our meds on time and appropriately, as well as a health management portal that recommends a dietary plan and begins to help us self-test different diet, exercise and other daily living practices that may impact our condition until we narrow down the flare-up association and circle back around with our clinician to validate our findings? Whew…deep breath. Should this really be that hard to do? And I didn’t even mention the correlation between our genetic make-up and our symptoms, and how that impacts clinician direction, medication and our self-discovery efforts. Now you’re talking!

So, why doesn’t that happen today? Umm…let’s see…how long do you have to read this blog? Or personal relationship with our own healthcare is an unfortunately complicated one. At the Health 2.0 Accelerator, a nonprofit organization working with Health 2.0 companies and traditional health care organizations, we are beginning to chip away at this ideal by driving integration of technology and the consumer experience. From our perspective, we see consumers starting to seek comprehensive solutions, rather than fragmented tools and services, from this emerging movement referred to as “Health 2.0.” Health 2.0 companies are seeking ways to expand their offerings to consumers rapidly and cost effectively, while fortifying or evolving their business models. “Traditional” healthcare organizations are starting to explore new capabilities for patients to generate, analyze and consumer health information.

The great ideas in these videos are finding realistic test beds to see what works and, most importantly, what we the people need, want and will use to begin to take part in our healthcare…just for us…in the same independent, personalized way we have begun to do so in so many other parts of our lives.

It will distinguish itself by limiting contributors to those MDs, and PhDs credentialed to address the clinical topics.

So far, so good. What could be better? Three things.

- First, include contributions from “credentialed” patients and caregivers themselves – that is, those who have encountered the disease “up close and personal,” who have demonstrated that they understand it, have managed it and survived it – or not.

That important patient information could be in a separate segment, perhaps, or noted as such, but it should not be ignored. Patients and caregivers have important contributions to the overall understanding of the condition itself, as well as to the experience that other people will have. Credentialed clinicians might well know how to describe metastatic cancer or viral replication dynamics, but only a credentialed patient can offer insights into the interior state of the person who has that experience. Likewise for the caregiver who helps them.

Yes, it’s true that those patient insights can be found on other sites, but those sites may not be as accurate as Medpedia seeks. Lacking these patient insights Medpedia is replicating on the web what happens far too often in clinical settings – clinicians and patients talking different languages and “past” each other, rather than “with” each other.

- Second, address controversies upfront. Clinical knowledge is growing at a rapid pace. As one edge leads, disagreements will ensue. As the other edge trails, likewise. These controversies are some that have spawned patient groups to go their own way and have allowed charlatans to prey on people desperate for help. Acknowledging those controversies will tell more of the truth about health care – that it is not exact, that there are unknowns and that important individual differences are at play in the course of any illness.

- Third, provide some “so what?” information. Medpedia is developing into a great encyclopedia and that is fine as far as it goes, but today’s – not to mention tomorrow’s – health care will not be as accessible as anyone – clinicians or patients – would like. Information is only the beginning and clinicians don’t need the information on Medpedia. They know it. Patients need the information, but they also need to know what to do with it. This is the thorny part, and it must be addressed.

Don’t take my word for it. Check out the conditions on Medpedia. Today’s version of Alzheimer’s, for example. I’m no expert, but in keeping with what I hear from those who are and related to my three hopes for the future of Medpedia:

- First, contributions from “credentialed care givers” would say that Medpedia estimates of the $45,000 annual cost of care is a gross underestimate of the true costs – which include lost income to caregivers and the known impact on their own lives in higher mortality and morbidity.

- Second, contributions from treating clinicians would indicate that with some patients they get better results than this article would indicate. Perhaps those insights would improve the progress towards clinical solutions for the condition.

- Third, both expert clinicians and caregivers would urge some actions for anyone who suspected the onset of Alzheimer’s – such as early diagnosis so the patient and family can make adequate financial and legal plans and identification of support systems for the caregivers.

All the best to Medpedia. May it begin to fill some important gaps in health care.

Ted Eytan, MD MS MPH

This month’s Man of the Month is Dr. Ted Eytan, who interviews Holly Potter, Kaiser Permanente’s VP for Public Relations, on the use of social media in health care below.

Ted Eytan currently works as a Medical Director for Delivery Systems Operations Improvement for The Permanente Federation, LLC. His experience is in working with large medical groups, patients, and technologists to bring health care consumers useful information and decision-making health tools, to ensure that patients have an active role in their own health care.

He attended medical school at the University of Arizona. He received his master’s of public health degree from the University of California, Berkeley, and his master’s of science, health services degree from the University of Washington. He completed his residency training at Group Health and his fellowship training in the Robert Wood Johnson Clinical Scholars Program at the University of Washington.

In my Man of the Month-ness (or as I’d like to say, my Honorary Woman-ness), I’d like to highlight the contribution of a leader in health care, in this case, Holly Potter, who is the vice president of Public Relations for Kaiser Permanente.

I met Holly several years ago through her work on KP HealthConnect, Kaiser Permanente’s national electronic health record and personal health record. More recently, Holly’s been a mentor to myself and others in understanding the use of social media in health care. One of the most important things she’s done as a leader is to start with the idea that there is a use for social media in health care, and it’s made a difference for many at Kaiser Permanente and beyond.

Read on, and thanks, Disruptive Women in Health Care, for the opportunity to bring these stories forward!

Holly Potter, vice president for Public Relations for Kaiser Permanente (on the right), with Anna-Lisa Silvestre, vice president for Online Services (on the left), at the United States Senate, April, 2008

Ted: “Holly, tell me about when you began your career with Kaiser Permanente. How did you choose KP and what was your first position?”

Holly: “After spending six years running HTPotter Communications, a small firm specializing in nonprofit and public health communications, I joined KP in late 2004. I was initially attracted to KP because I had a been a long-time, satisfied member. In addition, the launch of the Thrive advertising campaign just the year before, signalled to me that it could be an exciting place to do the kind of work I love. I was right.

I feel very fortunate that my first role at Kaiser Permanente was as the communications lead for the implementation of KP HealthConnect, our electronic health record system. In that role, I worked directly with the IT, clinical and operational leads to support end-user adoption and promote the rollout internally. I joined just as our eighth region was completing their first installation of KP HealthConnect and was with the project team up through the completion of our outpatient and online implementations.”

Ted: “What about the area you are leading now, Public Relations, National Media and Stakeholder Management, what was it like when you started? How did it interact with the local and national community compared to now?”

Holly: “People are often surprised to learn that public relations is a relatively new department at KP. We’ve only been around for two years and during that time, our team has been able to build what I believe is a world-class operation. Our initial focus was to build our reputation via traditional media outreach. At the end of 2008, we had increased our positive media mentions 191% over 2007 (246% over the 2006 baseline, before the department was created). With the traditional media relations work in place, we are now turning our attention to other PR avenues, including third-party stakeholder engagement, strategic partnerships, event sponsorships, speaker placements, and of course, new and social media engagement. I think in 2009 we will make strides in each of those areas, but the team as a whole is most excited about diving into the social media world.”

Ted: “New media and social media engagement seems to be a sticking point for many health care organizations. I remember when I first started working with you that you said something along the lines of ‘we don’t have time to deliberate about this anymore.’ What was that conversation like to have in your role, and what is it like today?”

Holly: “Many people continue to believe that new/social media are “less relevant” than traditional media. I think we learned the hard way that the two are not mutually exclusive. Before becoming active in the Web 2.0 space, we watched as an inaccurate story about Kaiser Permanente spread through the blogosphere and ultimately land on the front pages of the Los Angeles Times and Wall Street Journal. We accept the fact that there will be conversations about Kaiser Permanente in the new media world. The decision we had to make is whether those conversations would happen with or without our voice. We feel like we need to engage because we have valuable knowledge and perspectives to share.

The challenge we face today is how to focus our energies. How do we balance the time we spend in social media conversations with the rest of our workloads? I don’t think we’ve found the right answer yet, but we are enjoying experimenting.”

Ted:“The decision you are talking about, to change the way a multi-billion dollar non-profit health system interacts with the outside world, seems like a pretty big one to be a part of.

This blog’s readers may be involved in decisions that are potentially this disruptive, or even more disruptive, in their careers.

Ted: “What are some things a person should do or be aware of in a situation like this?”

Holly:“Partners are invaluable to the success of this kind of disruption, especially in health care. Build alliances with key stakeholders who will benefit from whatever you are proposing. Gain buy-in from diverse constituencies and different layers of management. To do these things you must be able to clearly articulate you goals and objectives, and perhaps more importantly, demonstrate that you understand both the risks and benefits of the activity you hope to pursue. If you cannot clearly articulate those things to all the people who have a stake in the outcome of your recommendation, you may alienate critical partners and doom yourself to failure.”

Links: Kaiser Permanente: What Should Health Care Look Like in the Future?

Holly Potter’s Bio:

Holly Potter is vice president of Public Relations for Kaiser Permanente. She oversees efforts to promote the company’s story and achievements through both traditional and social media. In addition, her team is responsible for broad public relations, partnerships and stakeholder management programs that help to build Kaiser Permanente’s reputation among opinion leaders and partners in the health, business, philanthropic, and advocacy communities.

An experienced health communications strategist, she has held a variety of leadership positions directing a broad range of communications and advocacy campaigns. She brought to Kaiser Permanente a proven 15-year track record of award-winning public relations programs that influence stakeholders and shift public opinion. In her career, she has advised and partnered with senior executives in the nonprofit, government and corporate sectors to advance policy and promote brand identity.

Prior to joining Kaiser Permanente, she ran HTPotter Communications, LLC which served a variety of nonprofit and government clients in California and Washington, D.C. Her former clients include National Campaign Against Youth Violence, California State PTA, Public Health Institute, Drug Policy Alliance, San Francisco Wellness Initiative, Santa Clara County Public Health Department and the White House Council on Youth Violence.