Giving Back One Telemedicine Backpack at a Time

During a disaster, infrastructure, like electricity, water, roads and communication, may be damaged or destroyed.   Large crowds of people are in critical need. “Help can’t get to them and they can’t get to help,” Randy Roberson found. The social infrastructure is surely overwhelmed and chaotic without any command and control.  Medical care, which is desperately needed, may not be able to get to those in need.  Imagine yourself  in such a  bleak situation, overwhelmed,  with desperate or injured mothers, children, elderly, and you have nothing to offer them.

Over the past 15 years, Roberson has entered turmoil and tried to find solutions.  Using technology, Roberson has created two innovations that are making a difference.  The “Doc-in-a-Box” and the “Bring-Em-Back-Pack” uses telemedicine and solar or wind power to bring the expertise of physicians living outside the disaster zone to relief workers treating the injured.   Since 2004, telemedicine has been rendering medical aid to disaster victims in India, Thailand, Africa and the US.

Roberson was motivated by need.  There has been “a repeatedly documented need for a medical clinic that was clean, well equipped and brought in via land, sea or air,” he remembers.  Creating the clinic included assuring that it was securable and tough enough to withstand aftershocks and rough terrain.

Roberson didn’t start out doing relief work.   He was a broadcast journalist who had a life changing interview with Dr. Larry Ward, founder of Food for the Hungry, an international relief and development organization.  “The interview really rocked my understanding of many things and made me want to know more,” says Roberson.  Subsequently Roberson quit his job and began an eight year mentorship with Dr. Ward, learning how to perform needs assessments and how to move in chaotic environments.

Yet even with this mentorship, Roberson felt he needed more.  “The first hours and days after major events are when large crowds are in critical need…People would be crying out to me for help but I wasn’t a medical professional,” Roberson explains.  “But I did know satellite communications and have always been a tech nerd.”  By the 2004 tsumani that hit Indonesia, Roberson and Dr. Alan Michels had created a telemedicine clinic.  “He (Dr. Michels) would look over my shoulder from 8000 miles… He guided me with ‘Do this-try that-put pressure here’ sort of fashion.  I placed a digital stethoscope on a patient in anIndia relief camp in and on other side of world he could hear the beat.”

Roberson is clear that in the future deployments of the mobile medical clinic, they will be staffed with former special forces corpsman. “These corpsman also know what it is like to work in chaos when you run out of bandages and use t-shirts instead,” Roberson assures.  With that kind of experience they are ready for anything.

 The clinic idea has grown to include a “complete containerized field hospital with all medical, housing, food, water and sanitation needs,”says Roberson.  The backpack was created for versatility.  They provide first response before the clinics are delivered. With it, relief workers can preform needs assessments and  “mass triage and transport operations and even day -to -day operations of humanitarian relief,” Roberson explains.  Patient assessments and electronic medical records can be started in the field and the patient information gets to the field or ship hospital prior to the patient’s arrival there.

Using solar power and wind is truly forward thinking, “In almost every major disaster event power is out and communications are down.  In many instances it takes weeks to restore those (in some countries months). To sustain operations we focus on solar, wind and fuel cell technologies to remain functional when completely off power and telecommunications.  We can then quickly switch back to cellular and standard power when it’s reliable again,” Roberson explains.

When relief workers come into a disaster area, they are always forced to make critical decisions based on a lack of real time information.  The “Bring-Em-Back-Pack” provides information through its rapidly deployable live audio, video and other data streams.  Saving lives and reducing suffering are the two greatest initial needs of a disaster situation and they are the focus of

this mobile telemedicine project. With it,  the same tool is used to move the situation through the 4 stages of incident response: rescue, recovery relief and redevelopment.

One of the most important features of this technology is its ability to keep people engaged after the media stops reporting about a disaster. “We also use to reach back to the world through social media and board rooms of corporate sponsors and foundations.  [It] keeps people engaged after the media stops reporting (all too quick) and it provides amazing accountability and transparency which is greatly lacking in humanitarian relief worldwide,” Roberson believes.

Creating these aids has been an act of love for Roberson.  [I’ve] “mostly paid out of pocket, [and am] working on now attracting partners.  Some support [has come] from friends. It drains pockets quickly, Roberson states.  Roberson and his colleague have created a for-profit arm  of his organization to bring these technologies to market and thus fund the not-for-profit Disaster Logistics Relief  that has been established.  To learn more please contact Randy Roberson at rroberson@disasterlogistics.org .

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Every Human Has Rights!

Over the past 8 years, Nicholas Marshall Cooper has been actively involved in making the connection between human rights and health, and translating public health science into rights-based action.  This post is a continuation of the conversation we started with Cooper in October,”Great Things Are Possible.”

As a consultant to UNICEF’s Middle East and North Africa Regional Office and as a child protection officer in Haiti, Cooper has seen, first hand, the importance of the central tenets of the human rights approach:  empowerment and accountability.

Presently Cooper is a humanitarian researcher at the FXB Center for Health and Human at Harvard University. He started our conversation with a basic definition of human rights, “Human rights are freedoms and entitlements afforded to people purely on the basis of being human,” he says.

According to Cooper, all countries have signed at least one human rights treaty.  After signing a treaty, the country has to pass a law that ratifies the treaty.  This is how human rights agreements become national obligations.

“Human rights have both rights-holders (every person) and duty-bearers (countries, as they are the ones that sign HR treaties)  Human rights approaches seek respect, protection, and promotion of human rights by empowering rights-holders and duty-bearers to claim and advocate for their rights (rights-holders) and respect, protect, and promote fulfill (duty-bearers).,”Cooper states.

Viewing heath from a human rights perspective changes the strategies used in health communication, health education, policy and program design.  “Human rights approaches change the focus from “do this” to “you have a right to this, here’s how to claim it, and we’ll help you do it,” Cooper explains.   Participation is the difference.  It’s not a top-down approach but it involves letting countries (the duty bearers) know what they should be doing. Because of this, “Human rights approaches would, therefore, change both the message itself and to whom the message is directed : …and the desired outcome.” With regard to health communication, these are important changes to the message and the audience.

With regard to policy, the human rights approach concentrates on those who are the most vulnerable. Policies created using this approach would focus on “promoting awareness, meeting needs and enforcing compliance,” says Cooper.

Confusion seems to occur when discussing rights and health.  “There is no right to healthcare, but there is a right to health,” Cooper says.  The United States has ratified a declaration of human rights, (Article 25 Universal Declaration of Human Rights and Article 12 of the International Covenant on Economic, Social and Cultural Rights), which means that the US has made a commitment to create legislation which fulfills this right.  For example, access to affordable care of a high quality is part of the right to health.  “The government DOES have a duty to respect, protect, and PROMOTE health,” explains Cooper.

Under the rights framework we have both freedoms and responsibilities.  Suppose you are a smoker.  “While you are free to smoke, you are not free to give somebody cancer.  Giving someone cancer would mean that you were violating their right to health (maybe life).”  What if your child got lung cancer from second-hand smoke? “Under the rights framework, your child would be able to seek restitution from you for giving them cancer.”

Human rights provides a framework for advocacy.  In this case, smoking bans PROTECT the right to health of the child, while PROMOTING health generally.  Cooper adds, “hough human rights themselves are conceptually apolitical, their articulation isn’t. Nor are the policies and programs to meet them.”

Programs built from a human rights perspective might simply inform people of their rights. Others might provide legal service.  “A program must never violate rights itself. This is non-negotiable, as rights cannot be “traded off” against each other The guiding principle for non-governmental. organizations is capacity building, of both the rights-holder and duty-bearer,” Cooper affirms.

The ultimate goal of human rights is that everyone “has the ability …to live with their rights fulfilled and protected… As RIGHTS, they are not things that can be disputed. You have them because you are human.”

Good news on Metastases Research!

Just a short note “quote”…

The Answer to How Breast Cancer Invades Bone

Researchers recently solved the mystery of how breast cancer takes root in the bone. Now, the discovery has led to an experimental drug for breast cancer that has spread to the bone.

At Princeton University, Society grantee Yibin Kang, PhD, found breast cancer cells use a protein called Jagged1 to upset the normal balance of bone builders and bone demolishers. Jagged1 recruits cells that normally break down bone to dig deeper into it. This in turn releases molecules that further spur cancer growth.

“We knew the bone is a fertile soil for breast cancer to spread to. But we didn’t know why. We didn’t know how to make bone less fertile soil,” says Kang, Princeton’s Warner-Lambert/Parke-Davis professor of molecular biology. “Now that we know, the next step is to design drugs to break that vicious cycle.”

Breast cancer spreads, or metastasizes, to the bone in 70% to 80% of patients with advanced breast cancer. These malignant cells invade the spine, ribs, pelvis and other bones, causing pain, fractures and other complications. Current treatments offer symptom control but little else, Kang says. “The hope is that with more options, more combined agents, we can effectively control bone metastasis and hopefully treat it as a chronic condition,” he says.

Kang and his lab team are now working with drug maker Amgen to test an experimental monoclonal antibody (a man-made protein) that blocks Jagged1 in mice.

Kang hopes his quest in the lab one day results in lives saved in the clinic. “What we try to do in the lab is to figure out what the enemy is capable of and how cancer achieves its goal of spreading and killing patients,” Kang says. “You have to know your enemy to defeat it.”

(Please be advised this is a direct quote from American Cancer Society)

Are Patient Communities an Effective Way to Deliver Care?

Are Patient Communities an Effective Way to Deliver Care?

Dr. Andrew Watson
Dr. Jeffrey Benabio

That was the question debated at the 2012 Connected Health Symposium on October 25.  Two physicians, Dr. Andrew Watson, Surgeon and Medical Director for the Center for Connected Health and Dr. Jeffrey Benabio, Physician Director of Innovation with Kaiser Permanente faced off on this topic.  Alexandra Drane, Founder of Eliza Corporation, moderated the event.

Dr Watson presented the argument in favor of patient communities.  Noting the Institute of Medicine’s figures that $750 to $900 billion are wasted by traditional healthcare in the US, Watson feels that the face-to-face system of care needs to evolve.  With so many US patients already online, online communities are a vehicle to reach people over distance and time and the medical community has an obligation to help organize this, he said.

Dr. Benabio began with a quote from another physician “Patients running online communities are like animals running the zoo.”  Although he felt this comment both shocking and insulting, he felt that it expressed the depth of his worry.   He also voiced concern about who sponsors online communities, especially pharmaceutical companies.

After these preliminary comments each debater worked to refute the other’s points.  Dr. Watson asked Dr. Benabio for the research proving that  patient communities cause harm.  He also refuted Benabio’s assertion that all communities are sponsored.  Dr. Watson believes that patients are waiting for physicians to engage.

Dr. Benabio continued providing examples he found on the Internet  to disprove the appropriateness of patient sharing.  For example, he stated that on one site a patient stated that he had a flu vaccine, followed by a seizure.  The patient said he never gets a flu vaccine because of this experience.  Several people “liked” the comment.  Dr. Benabio believed this statement would stop people from getting the flu vaccine.

The debate continued along the same vein.

Perhaps there was a flaw in the question that was asked.  Are patient online communities really about providing care?  Or are they doing something else.  The debate  illustrates the division  among physicians and other healthcare providers concerning patient communities.  However, in the end, patients are moving forward, reaching out to each other to exchange information, support and experience.  Ignoring online communities, standing back and watching, claiming that time spent online is wasted: these are unproductive attitudes. Getting involved with online communities will not only inform patients, it will also inform healthcare providers.  Communications is key and online patient communities are not going away.

What do you think?

After taking the survey please share your thoughts in the comments.  Thank you.

Alone Together: Sherry Turkle

On “Wait, Wait Don’t Tell Me” Paula Poundstone describes her view of the neighborhood playground.

Wait, Wait, Don’t Tell Me Radio Show October 6, 2012

Transcript

Right now, panel, time for you to answer some questions about this week’s news. Maz, according to a study by the Wall Street Journal, a rise in the number of minor injuries to children might be caused by what?

MAZ JOBRANI: It’s not computer related.

SAGAL: It is, actually.

JOBRANI: Oh, the parents are not paying attention.

SAGAL: Because they are?

JOBRANI: They’re driving while being on the phone. Texting while…

SAGAL: They’re texting while parenting.

JOBRANI: Yeah.

(SOUNDBITE OF BELL)

SAGAL: This is a problem now.

PAULA POUNDSTONE: Does no one see it? Do you not see it right in front of your eyes? I don’t understand this stupid thing with the phones and the iPad and all that stuff. I don’t get it.

(APPLAUSE)

POUNDSTONE: It’s right in front of us and we don’t see it. You know what I mean? I mean, we live right near a park, and I watch people all day long, go by the park, doing this here, or talking on their phone. You know, while the kid is like hanging out of the carriage.

(LAUGHTER)

AMY DICKINSON: My mother, anyway, never paid any attention to me and she didn’t even have an excuse.

(LAUGHTER)

SAGAL: Yeah.

DICKINSON: It was like…

JOBRANI: Well if you get the kids an iPhone, you could text each other at least.

SAGAL: That’s true.

(LAUGHTER)

SAGAL: It’s like, “Mommy, I fell down a well.” Be right with you.

(LAUGHTER)

SAGAL: I mean parents who are too busy with their phones you’re not missing much. It’s like, “Yeah, I saw my baby’s third step. You know, it looked pretty much like the first.”

(LAUGHTER)

POUNDSTONE: And then the other thing is they have to take pictures of it and put it up. I don’t like that either. I’m sick of seeing the happy people’s children on the Facebook. I’m just sick of it.

(LAUGHTER)

(APPLAUSE)

SAGAL: It shouldn’t be surprising though, a lot of the parents who were texting while parenting were texting while conceiving as well, so…

(LAUGHTER)

(SOUNDBITE OF MUSIC)


Even though everyone is laughing, there is something important going on.  According to Sherry Turkle, Poundstone’s observations aren’t unusual.  Turkle, Professor of Social Studies of Science and Technology in MIT’s Program in Science, Technology, and Society and founder and director of the MIT Initiative on Technology and Self,  has been studying how technology changes minds and hearts for many years.

Dr. Turkle was one of the keynote speakers at the 2012 Connected Health Symposium October 25 and 26 in Boston.

Turkle started her presentation with a quote by Winston Churchill, “We make buildings and then our buildings make and shape us.”  She thinks it may be the same with mobile phones, mobile technologies and computers.

Based on 15 years of research and hundreds of interviews with children, teens and adults, Turkle has concluded that we need to take a closer look at ourselves, especially when teens tell her “we’d rather text than talk.” Her new book, Alone Together: Why We Expect More From Technology and Less From Each Other documents her quest to understand the relationship we have with new technologies, especially with mobile devices.

In her talk, Turkle pondered changes in relationships among parents, children, sweethearts and friends.  Perhaps, Turkle asks, we have too close a connection with our machines, perhaps behind our incessant “connecting” lies loneliness.

Basically, her thesis is that we are so busy with our connections that we are neglecting each other.  When people text at meals, at funerals, at religious functions, what is really happening? she wonders.

She is most concerned about those who should be developing conversation skills.  Her findings suggest that  people are fearful of the give and take of conversation and may be substituting “mere connection” for conversation.  As one 18 year old told her that, “I can get everything I need from g-chat.” Another teen states, “When you text, you have more time.  On the telephone, too much might show.”  Her fear is that with text messaging, the collaboration, creativity and concentration of face-to-face communication is lost.

Adolescents are sharing between 3,500 and 10,000 texts per month.  From her many interviews, she surmises that many teens use texting to confirm their feelings.  Turkle is concerned about what is being lost during all the face time with a phone.  As one teenager stated, “Someday soon I want to learn to have a conversation” while another described her efforts to learn to “try to have eye contact while texting.”

If we don’t’ teach our children how to be alone, they only know how to be lonely, Turkle believes.

Turkle’s voice, at a conference about mobile technology and connection, was illuminating and powerful.  Her words were about “health” the central message of the symposium.  The Center for Connected-Health‘s welcome to Turkle’s research was tremendous. Those who work in connected-health and telemedicine truly desire improvement in the well-being of all.  With that in mind, her work sheds light on the human condition, the need not only for connection but also for intimacy.  It sheds light on the need for balance.

What are your thoughts?  

 

Dr. Turkle’s presentation made me wonder if there is a way for health communicators and believers in all the good that connected-health can bring to help us achieve balance.   Perhaps we could tweet messages like this…

“Stop texting and start talking!”

“Set aside “no technology times” with your loved ones, you’ll love the connection!”

“Turn off the phone, (or the computer), and give your child a hug!”

In the comments section provide some feedback.  If you voted yes, can you think of other messages?  If you voted no, what are your views on Dr. Turkle’s observations?

Sobering and Scary

Monday October 29, 2012 Hurricane Sandy struck the Eastern Seaboard. As it moved inland it hit two winter weather systems creating what has been called a hybrid monster storm.  As of November 3rd over 113 deaths can be attributed to Sandy on the US mainland, mostly in New York.  Tropical storm force winds were seen over the 800 mile wind and rain path resulting in fatalities in states as far west as West Virginia, as far north as New Hampshire and as far south as North Carolina.  Many are raising the question of the relationship of this mega-storm to global warming.

Josh Glasser studies the impact of climate change on public health, human security and disaster recovery at Harvard’s School of Public Health.  When discussing the topic, he turns to The Intergovernmental Panel on Climate Change the leading international body, established by the United Nations Environment Programme (UNEP) and the World Meteorological Organization (WMO)  for assessment of what is happening in climate change.   The IPCC is a body that reviews and assesses the most recent scientific, technical and socio-economic information produced worldwide relevant to the understanding of climate change.

According to Glasser, “Hurricanes have always happened, but global warming will be like accelerant on a fire.”  He explains that there is “consensus that global warming will most affect the ‘hydro-cycle.’”  The hydrological cycle, or water cycle, is the continuous movement of water on, above and below the Earth’s surface. Water molecules move from one reservoir to another:  from ocean water to the atmosphere, by evaporation and cloud formation; to condensation and precipitation as rain or solidifying to ice.

The common instrument of change in the cycle is heat exchange.  And that is where global warming becomes involved.  As described by Dr. Mey Akashah, the capacity of the atmosphere to hold larger cloud structures for longer amounts of time plays a part in this change.  Glasser agrees that there will be “more intense and frequent heat waves, floods, droughts and severe storms.”

Another impact of global warming is rising sea level.  “Sea level rising is a total wild card.  It complicates planning and makes storm surge worse,” he says.  One cause of sea level rising is melting of the ice caps.  However there is another that we don’t usually think about.  Imagine a pot of water.  As it heats, the water expands and actually rises in the pot. Now imagine the volume of water in the ocean, as it heats, it expands and rises.

Many countries are feeling the effect of the ocean water’s expansion now.  Some feel that the high storm surge during Hurricane Sandy was caused by this phenomenon.  Glasser has seen first hand, as a Fulbright scholar in Vietnam and later Bengladesh, the impact of rising sea levels on people. His interests include the link of climate change with human security, the impact of humanitarian practices, the importance of disaster recovery, adaptation planning and risk reduction.  “Many human societies have developed over time to adapt and conform to the environmental conditions in which they find themselves.  You see it in land use, housing, infrastructure, health care, recreation, voluntary migration patterns and so on.”  That adaptation keeps them safe in sometimes very difficult situations.  But when there are more frequent, intense disasters, especially in places with limited resources, people are put at higher risk. Environmental migrations are estimated by year 2050 to range between 50 million and 1 billion people.

“People have always been mobile, but the numbers are rising fast. “There are now more environmental migrants than refugees in the world. What’s more sea level rising and extreme events are likely to displace tens of millions in coming the coming decades,” Glasser adds.

How does climate change impact vulnerable populations?  Glasser explains that climate change undermines health in many ways.  It “…tears at the fabric of society–food production, accessing healthcare, the mental toll of disaster.  These impact not only human security, the ability to obtain needed resources on an individual level, but populations as a whole are affected.”

As has been seen with both Hurricane Katrina and now Hurricane Sandy, when important infrastructures are damaged, the effect can be devastating.  Glasser notes, “If the hospital or clinic is flooded out, no one is getting treated for any condition…climate-sensitive or otherwise. Imagine being an expectant mom, giving birth at home just as the monsoon floods come through.”

Glasser continues, “People the world over have adapted communities to their current environmental conditions.  Homes, agriculture, urban structure, health care, recreation, etc., are all tied to the status quo.  The crops selected, building materials, diseases to prepare for, even holidays and cultural festivals–all of it is related to the natural environment.  Too rapid change is a problem for all but especially a problem when the government is weak, or resources are rare compounding the environmental problems.”

Some suggest that people just move from vulnerable areas. Often the most vulnerable “the very young and the very old, disabled, minorities” and the other poor are in harms way.  “Cheap land is also the most marginal…living there is not always a choice,” Glasser point out. 

Additionally, there is little research on the reasons for people moving.  Likewise, the area of human rights is underdeveloped. “On the individual level promoting choice, autonomy and flexibility and freedom are important. But on population level, it may be hazardous if too many people move, or if too many people stay,” Glasser states.  These conflicting perspectives in human rights were apparent during Hurricane Sandy.   Governor Christie of New Jersey “essentially said those who stayed in Atlantic City were forfeiting all sorts of rights to protection.  Justifiably from the perspective of risk to first responders–but for many, there may not have been a realistic choice to leave.  There is a right to move but also a right to stay put,” Glasser explains.

There are no easy answers to these issues.  Global warming is likely to impact human well-being in profound ways.  Glasser sums it up, “All of this makes climate change a very sobering and scary possibility, I think.”