Yesterday we encouraged our readers to take part in the live video chat presented by the White House, during which HHS Secretary Kathleen Sebelius and Health Reform Director Nancy-Ann DeParle took questions about President Obama’s recent health care reform proposal.

Did you watch yesterday’s live chat? If so, what are your thoughts and reactions on what was said? What additional questions do you have for the President as well as the HHS Secretary and the Health Reform Director?

Chairman Wu, Congresswomen Edwards and Biggert, and Committee Members. Thank you for this opportunity to testify at this hearing on the National Institute of Standards and Technology.

I ask that my written testimony be accepted into the record.

Today you will hear from accomplished researchers and leaders in their fields of study from Duke University and Stanford. These individuals are scientists, entrepreneurs and biotechnology innovators.

I come here primarily as a mom. I am here today to address the critical link between my experience as a mother striving for treatments, for my kids and millions of others, and the question before this Committee — How our National Institute of Standards and Technology can more effectively influence innovation in life sciences.

I begin with a plain statement about NIST and its activities — it can appear to be boring, non-interesting, and terribly esoteric. NIST suffers from being hidden, embedded into the foundational infrastructure of the scientific and early commercial enterprise of innovation, as well as having the thankless task of creating measurement standards for a whole array of scientific disciplines. However, it is precisely because of these elements that this Committee needs to champion a more active role for NIST in the life sciences.

Some have argued quite convincingly that the next century of scientific and technological innovations will be most profound in the life sciences. NIST is critical to a robust biomedical enterprise and must contribute high quality materials, methods, and expertise for the field to advance on a platform of certainty and high quality measurements.

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Human beings have a fundamental right to health, which must be equally distributed to all. To be able to provide the prevention, care, treatment and rehabilitative services needed for its population, Rwanda has embarked on an ambitious journey to transform its socio-economic situation by changing its economy from an agriculture-based to a knowledge-based economy. In this context, Rwanda has identified the use of science and technology as a key tool for achieving our socio-economic transformation and reaching the MGDs. Although a high tech strategy may appear inappropriate for the health system of a developing country, this is is not applicable to Rwanda because our health sector ICT plan is integrated into two master plans: our health sector strategic plan and our national ICT plan. We know that e-Health is vital in order to create an effective and sustainable health system, as it will help us solve challenges in our health system, such as the lack of infrastructure and the shortage of professionals (since roads are still a problem in some remote areas, sending information, plans, and reports by ICT saves time and money).

Another reason why ICT for E-Health should be developed is because the right to health cannot be separated from the right to information, and the use of new information and communication technologies is the most accurate and timely way to provide information.

A good flow of information concerns four categories in the health sector: the patients, the policy makers, the care providers and the program managers. When it comes to patients, they need to be educated on their health needs and on how, when, and where to seek proper care. Also, once on treatment, patients should know why it is important to go for timely medical follow up appointments and be compliant to treatment, since it not only aids their recovery, but also helps to avoid dangerous resistances to epidemic diseases like HIV. Patients would be informed of these things by making ICT tools available to health professional at all level: community health workers would use phones, while central and district managers, health centres, district hospitals and referral hospitals would use web-based tools. For policy makers and program managers, ICT is important because it helps to design health policies and programs that are informed by evidence and based on accurate information. In general, the use of ICT has proven to be the more effective, secure, rapid and accurate way to serve patients and program managers. This is why the Government of Rwanda has put ICT as a top priority for its health development and recognizes that there is an urgent need to build e-Health capacity.

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

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

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

Now, on to more serious matters.

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

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

The World Health Report 2008, from WHO, entitled “Primary Health Care Now More Than Ever” acknowledges the need to improve health systems for all through a Primary Health Care (PHC) reform. The report cites Brazil among other countries as good example of successful implementation of PHC policies and emphasizes the role of integrated health information systems as instrumental to achieving this reform.

It is impossible to deliver high quality health services to hundreds of thousands or millions of people without robust processes. That doesn’t mean taking away the human nature of health care. It means that it is possible to put methods in place that can, with the strong support of technology, organize health care delivery, support promotion and prevention, improve services quality and extend its reach. That IS eHealth.

In general, eHealth only makes sense if it supports a Health System. An example I’ve been closely involved with is SIGA SAUDE system in Sao Paulo city. SIGA SAUDE is São Paulo city’s integrated health information system. It is in operation since 2003, and today is present in all 700 health care facilities, with 14 million people in its database, processing 45 thousand scheduling requests a day. SIGA SAUDE implements all the business rules of the Brazilian National Health System, from family and community care, to surveillance and patient flow management.  The system reflects our country’s experience of using a national health system heavily focused on PHC and its long tradition of developing health information systems, now in the move to an integrated architecture.  Thirty years ago, we started developing several health information systems to deal with specific health issues, leading to 200 different systems that did not talk to each other. From 1999 on, we made the decision to move to an integrated health system to support the nation health system comprehensively. The basic premise is that information should be collected only once at the point whre it is generated and from that shared in the network.

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

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

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

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Several months ago I was attending a funeral.  After being introduced to a relative’s relative, my family member asked me if I knew what had happened to Mr. Smith, pointing to the elderly man walking with a cane.  It was a miracle my family member said.  A miracle I wondered, looking skeptically at him.  Yes, Mr. Smith was having a CAT scan and the results showed that he had pancreatic cancer.  A miracle I asked, why so.   As it turned out the patient, who in his early 80’s went to his doctor complaining of not feeling well.  Abdominal pain. Distention.  General malaise and discomfort.  One thing led to another and CAT scans were ordered.   And as the family story goes, “by mistake” a CAT scan of his pancreas was performed.    And as I understand the story, the tumor was removed.  No metastasis was found.  The gentleman was advised to be sure to come in for his scheduled checkups and to tell his doctor about any subsequent health problems, and to be prepared for follow-up tests.   He was told that some tests will be repeated in order to see how well the treatment is working.  The recent death of actor Patrick Swayze reminds us that pancreatic cancer is so difficult to detect and diagnose early. There aren’t any noticeable signs or symptoms in the early stages of pancreatic cancer.  The signs of pancreatic cancer, are often like the signs of many other illnesses.[1]   Hmmm, I agreed, a miracle by accident.

More than 100 opinion leaders from all over the globe (including several Disruptive Women) participated in the Aspen Health Forum last month to discuss the most pressing health issues facing the nation and world. President Obama’s health care reform agenda, the emergence of swine flu, HIT, food safety and strategies for defeating the obesity epidemic were among the many issues discussed.

Watch Nobel laureates, federal decision-makers and world-class medical scientists impart their insights here: http://www.aspenhealthforum.org/video.

The day before my daughter Elise’s 15th birthday, the new iPhone went on sale.  My birthday was 4 days later.  So Elise figured out we should buy each other an iPhone to mark our big days.  She planned (and saved) for months.  She spent weeks talking to friends, researching apps on line, planning for such accessories as protective covers, and educating herself on how to maximize her minutes.

When the big day came, we made our way to the Apple store and stood shoulder to shoulder with hundreds of others waiting on a very long line.  Two and a half hours later we were invited, actually escorted, in to the store by an extremely friendly, knowledgeable young man who stayed with us during the entire purchase transaction.

He answered tons of questions (mine, not Elise’s…she already knew everything), politely reviewed various functions with me (Elise was extremely patient during this process), and made great suggestions about which plan was best for us.

While we were waiting on line, I looked around at the people waiting with us–we were an extremely diverse group–and wondered (a) Why in the world were we all willing to wait hours to buy a telephone, a very expensive telephone?  (b) How did the folks at Apple get us to this point? and (c) What lessons could we take away and apply to health care?

Here’s what I came up with:

Cool. The iPhone is not your mother’s rotary dial wall phone.  The engineers and creative types figured out how to make a very uncool, but necessary, object not only aesthetically pleasing, edgy, and fun, but useful, convenient, and easy to use.  They stimulated demand.

Now if the Apple  folks could only do for colonoscopies what they did for telephones.  I am only half joking.  How do we make taking care of ourselves and our loved ones cool?  How do we make boring, sometimes not so pleasant preventive measures cool and edgy?

Hospitals are scary places–while some newer facilities have made efforts to look more appealing (open atriums with green trees, brighter colors and lighting), many are dark, smell strange, are old and creaky, have tons of frightening tubes, machines, noises, and for most people are places to be feared and avoided.

What amenities can be added to make it harder for patients to find excuses not to get that mammogram (valet parking, anyone?), not to go for that follow up, not to just give up and leave after waiting for two and a half hours in the waiting room (Elise and I waited that long–and the friendly folks at Apple handed out water, and updated us on our progress).  The only water I could find in my local hospital emergency room last week (when we were there with my son) was a nasty water fountain that had stuff in it that would make a petri dish cringe.  There were vending machines with chips, candy and soda, but it was broken.

Service. Imagine for a minute that when you enter a clinic, doctor’s office, or hospital, you are accompanied by a knowledgeable, helpful, pleasant individual who can speak to you in a non-condescending, judgmental manner, in language that you understand.  Someone who can help you navigate a complex system of decision making.

Quality. Pretty obvious attribute.  Quick–think Mayo, Cleveland Clinic, Johns Hopkins.  What is it about these institutions that people think of when asked to list “best” hospitals.  How do you (should you?) rate different doctors? Nurses?  Most people buy the iPhone because they believe they are buying a high quality product.  How can we be sure we are buying high quality health care?

It’s interesting when you look at the literature.  Quality is defined in many different ways by health care professionals and by patients.  Sure there’s overlap.  But in addition to better health outcomes, living longer and better–patients highly rank items such as convenience, hours of operation, waiting times, and location as quality indicators.  Apple stores have better hours than most clinics and physician offices.  My dog’s vet has better hours than most doctors.

Value. Why was a 15 year old willing to save her hard earned money for an expensive phone (and why was I willing to pay not insignificant monthly charges) for the iPhone?  Because we thought it was worth it.

If only we could figure out a way to get people to see that it’s worth it to exercise, eat healthy, get annual check ups, not smoke… and get that colonoscopy.

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

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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This week, after the Senate confirmed Governor Kathleen Sebelius (D-KS) as HHS Secretary, HHS announced the establishment of two new health IT committees in the department. Jason Miller of FederalNewsRadio reported:

HHS announced [Wednesday] in the Federal Register that the Health IT policy committee would recommend a policy framework to develop and adopt nationwide infrastructure to permit the electronic exchange of health information.
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The Health IT standards committee would make recommendations around data and technology standards, implementation specifications and certification criteria for the electronic exchange and use of health records.
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Previously, HHS had similar committees addressing policy and standards. But the Recovery Act, which included more than $19 billion for health IT, required HHS establish these new committees with a different makeup.

(See the complete article for more details about membership of the committees.)

The HHS Department’s focus on health IT this week also included a two-day hearing on “Meaninful Use” of Health Information Technology, hosted by the National Committee on Vital and Health Statistics. It’s no surprise, then, that Health IT and the “meaning of meaningful use” have dominated health discussions around the Web this week.

Josh Seidman on the Center for Information Therapy blog highlighted two organization’s issue statements regarding meaningful use:

The [Markle Foundation] statement appropriately highlights patient access to clinically relevant electronic information. It could further by clarifying that such information should be accessible to consumers in a way that they can understand and use it, and also that facilitates action on their part, or as [the Consumer Partnership for eHealth (CPeH)] puts it, “access their personal health information, receive prompts and reminders, and use patient decision support without sacrificing privacy.”

These patient-centered definitions of meaningful use are critically important for ensuring that ARRA HIT provisions actually change how health care is delivered in this country.

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Disruptive Women, along with media partner The Hill, held its first health briefing yesterday on the subject of Health eGaming, Healthy Patients: Supporting Stimulus Goals Through Health eGaming.

The Washington Post’s coverage of the event can be found here and The Hill’s video coverage is posted here.

To see pictures of the event, click here (for Facebook) and here (for Flickr).

Robin Strongin of Disruptive Women in Health Care

Congressional Staffer Attempts Health eGaming

The panel featured some very Disruptive Women including:

The Honorable Nancy L. Johnson Senior Public Policy Advisor for Baker Donelson Former Chair, House Ways & Means Health Subcommittee Glenna Crooks, Ph.D. President, Strategic Health Policy International, Inc. Julia Loughran Digital Media and Gaming Solutions Expert, iConecto—Gaming4Health Janet Venturino Vice President for Marketing Communications, Kaiser Robin Strongin President & CEO, Amplify Public Affairs Creator, Disruptive Women in Health Care blog

Health eGaming, Healthy Patients Panel

After the panel, attendees were able to try their hand at eHealth Games such as Wii Fit, Learning for Children Assessment Games, Re-Mission and Brain Games.

Debate surrounding health information technology, particularly electronic health records (EHR), has become increasingly dominant among health care-related discussions around the Web. Forbes.com chatted with Geoff Brown, CIO at Inova Health System (a Virginia-based not-for-profit health care service provider system consisting of hospitals and other health care centers), about the significant role health IT could play “in improving medical care, cutting costs and speeding up treatment.”

The health-care industry is a study in contrasts. On one hand, it employs the best that medical science has to offer. On the other, it is one of the least automated sectors from an IT standpoint.

All of that is about to change, however, spurred as much by the federal government’s push for cost control and accountability in health care as the industry’s own need for modern information exchange. The task for implementing those changes will fall on CIOs at hospitals and clinics, as well as the companies that outsource records and information for doctor’s offices and outpatient facilities.

Read the interview with Geoff Brown about health IT and hospitals

Matthew Holt conducted and posted three interviews relevant to two sides of the current health IT/EHR debate about, to use Holt’s words, “whether the HITECH act should pay for and dictate a specified, certified type of EMR product use OR pay for data and outcomes and not specify how providers get there.” Holt spoke with Glen Tullman, CEO of Allscripts, Mark Leavitt, Chair of CCHIT, and Jonathan Bush, CEO of AthenaHealth during HIMSS09. Describing his take on the two sides of the debate highlighted in these three interivews, Holt explained:

The “cats” support certification and EMR mandating (more or less). The “dogs” think that existing EMRs are often counterproductive and that a mix of other data sources, processes, and patient outreach technologies will get us where we need to in terms of improving outcomes much quicker.

Below is Holt’s interview with “cat” Mark Leavitt:

Find all three interviews on The Health Care Blog

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The first in a series of health briefings hosted by Disruptive Women and The Hill is next Wednesday (4/15) at noon in the Rayburn House Office Building.  Health eGaming, Healthy Patients will feature brief presentations on “Supporting Stimulus Goals Through Health eGaming” from a panel of Disruptive Women.  After the jump is the event announcement posted here last week.

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