Skinny Jeans and Menstrual Apps

Susannah Fox speaks about her mentor, visionary physician, Tom Ferguson, with fondness.  As early as 1975, Dr. Ferguson was writing and advocating empowerment for patients.  In 1987 he began providing online health resources.  As the Internet evolved, Dr. Ferguson was at the forefront of the evolution of the empowered, engaged, equipped and enabled medical consumer, the e-patient.

From Ferguson, Fox gained an appreciation of health as being just one part of life, one of the many pieces of the puzzle of life.  At the 2012 Connected Health Symposium,  even as people self-track and become engaged with their health, Fox wondered how much self knowledge is really shared with clinicians.

As Associate Director of the Pew Research Center’s Internet and American Life Project, Fox has been providing information about the social life of health information, peer-to-peer healthcare and the use of Internet by those with chronic disease for over 12 years.  Fox shared  her most recent survey findings at the symposium.

According to Fox, 60 percent of Americans are tracking weight, diet or exercise routine.   One in three adults track health indicators or symptoms and one in three caregivers track their loved ones’ health indicators.  But, how are they tracking?

Surrounded by many people who are connected, technology savvy self-trackers, Fox had the courage to admit that her own self-tracking strategy does not involve scales or batteries:  she uses the time honored “skinny jeans method.”  That is, one owns a pair of jeans that one used to be able to fit into.  Striving to get back into those “skinny jeans” is the life goal of many women, myself included.  We monitor our weight and fitness via those jeans.

Around 50 percent of those who were surveyed are tracking in their heads–they use the “skinny jeans” method.

One in three are still  using the pencil and paper method.  Only one in five use technologies like apps, websites or devices.

If the person has two or more chronic conditions, he may be tracking:  sixty percent of those with two or more chronic conditions track their health information with eight-five percent of them using a cellphone tracker.

Yet even though people are collecting data, they aren’t sharing it.  Two-thirds of data collectors do not share the data they collect.  Fox believes that this missing information may be useful to clinicians and recommends clinicians ask their patients about health tracking.

Another piece of information that Fox gleaned from her survey results is that people are not interested in apps that stand alone.  She thinks successful apps are those that are  integrated with online programs like Weight Watchers.  Weight Watchers has had 10 million downloads of their app which is integrated into the Weight Watcher’s popular support and knowledge system.

Fox’s take-away is that those who are creating apps, websites or devices need to make tracking as easy as it is when keeping up with it in the head.   She also impressed on her audience the need for innovators to create apps that are what the consumer wants to know.

So what do consumers want to know?  An interesting outlier may lead to a clue of what information men may be interested in collecting.  Her survey found that  popular apps that men are using are menstrual cycle tracking apps.   Hmm…wonder why?

Susannah Fox was one of the many amazing speakers at the 2012 Connected Health Symposium that occurred October 25 and 26. I will be highlighting the content of this symposium in the next few posts so stay tuned.

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Bed Rest versus Family Survival

Language matters.  So when we talk about changing a discussion of “Women’s Health” to “Women and Health,” we aren’t being tedious.  We are being profound.*

“Women and Health” is a phrase that recognizes the roles of women in the health system, from informal providers of care to primary decision makers about health in their families.  It also acknowledges the worldwide increase in numbers of women in medicine and as health professionals.

Unfortunately, many societies are neglecting the needs of women throughout their lives.  For example, every year hundreds of thousands of women die in pregnancy and childbirth.  The inequity of health care is evident by the fact that 99 percent of those deaths are in developing countries.

When women are healthier, children survive and are healthier and that means the continuance of communities.  High infant mortality is a direct function of women’s health prior to conception, during pregnancy and after pregnancy.  Even in developed countries, health disparities increase the problems in pregnancy and increase infant mortality.

Darline Turner-Lee is actively working to help high-risk mothers-to-be in the US.**  She is a physician assistant and certified exercise specialist.  Her expertise along with her personal pregnancy experience has led her to create the blog and company Mamas on Bedrest & Beyond.  “I work to educate women and raise awareness to the issues of Mother/Baby friendly childbearing….I educate women to ask questions, be aware of any new changes in their health….”

Her focus is on women who have been prescribed to bed rest.  For those who are unfamiliar with the bed rest prescription she explains, “The “reason” bed rest is prescribed is to prevent preterm delivery. High blood pressure, pre-eclampsia, cervical insufficiency, preterm labor and multiple gestation are some of the most common reasons, but there are many.”  The bed rest prescription is more common than one would think, “Each year about 750,000 to 1milion women are prescribed bed rest during pregnancy.”

In her work with mothers who have been prescribed bed rest, Turner-Lee sees first hand, the impact of disparities on women and their children.  “When working women are placed on bed rest, they risk losing their jobs, their income and family security,” she describes.  “The disparity occurs between lower income women and women of higher socio-economic status,” she notes. “Lower socio-economic status women often can’t leave their jobs, so don’t “comply” [with the bed rest prescription].  As a consequence, those women, often minority women, end up with poorer outcomes.”

But as Turner-Lee points out it is not an issue of medical compliance. “Women weigh their options-provide for their “living” family or save an unborn baby.  It’s a hell of a choice to have to make,” Turner-Lee realizes.

Although there is legislation that should protect women, the Family Medical Leave Act (FMLA) only guarantees 12 weeks of unpaid leave with job guarantee.  Turner-Lee explains, “A big problem is the lack of paid maternity/sick/family leave in the US.   In lower paying jobs, if you are out, you don’t get paid.  After that, a woman is on her own. Between losing their income, being placed on bed rest (often in hospital), financial problems quickly rise. If mama or baby has complications, the medical expenses often render families bankrupt. It’s a huge issue.”  A prescription of bed rest can, in fact, be “devastating” for lower socio-economic women and their families. For example, with a diagnosis of cervical insufficiency, women may have to go on bed rest with four and a half months left in their pregnancies. In this situation, “complying with a bed rest prescription is “the difference between having a home and being homeless and hungry.  Even women in so called “white collar” jobs, if they are unable to work, they are at risk of losing their jobs, their

Of course, increasing opportunities for good health is the best way to prevent at-risk pregnancies.  In the present environment, preventing the possibility of bed rest is “really good prenatal care, really early in the pregnancy,” says Turner-Lee.  She cites research by Jennie Joseph, CPM, who has gotten positive results in starting prenatal care at six weeks which is two to six weeks prior to when US obstetricians typically first see mothers-to-be.  “In the US, obstetricians typically don’t see mamas until between 8-12 weeks and often a problem may already be brewing,” says Turner-Lee.benefits.”

Turner-Lee points to statistics.  “The US has some of the highest infant mortality rates in the world; highest amongst indus

trialized nations and even amongst some “developing” countries.”  The Office of Minority Health, part of the US Department of Health and Human Services provides some other sobering facts about US infants:

    •  African Americans have 2.3 times the infant mortality rate as non-Hispanic whites. They are three times as likely to die as infants due to complications related to low birth weight as compared to non-Hispanic white infants.
    • African Americans had twice the sudden infant death syndrome mortality rate as non-Hispanic whites, in 2008.
    • African American mothers were 2.3 times more likely than non-Hispanic white mothers to begin prenatal care in the 3rd trimester, or not receive prenatal care at all.
    • The infant mortality rate for African American mothers with over 13 years of education was almost three times that of Non-Hispanic White mothers in 2005.
    • African American infants are 2 to 3 times more likely to die before their first birthday than any other group.
    • Stillbirth is more likely in African-American women than any other ethnicity.***

Preventable conditions like hypertension and diabetes, (conditions that are more prevalent in low income women) are risk factors for problems during pregnancy.  Likewise, infections that impact the fetus are also more common in African American women.

Health disparities based on income and ethnicity impact mothers-to-be, fetuses, mothers, babies, children and all adults.
Women in every society are the main caregivers of children, the elderly, the sick and the disabled. Perhaps focusing on the right to health, which according to the World Health Organization, compels governments to create conditions so that everyone can be as healthy as possible, is the best starting place.  Because assuring that women are as healthy as possible is not just about their individual health, it is about the future health of their children, the health of a nation. Ensuring this human right makes sense for society.  In the US, even bed rest, a way to possibly prevent infant mortality can actually financially destroy the mother, a possible surviving baby and the rest of the family.  Is it possible that there is another way?

* For more information on this exciting change read this discussion by Julio Frenk, Dean of the Harvard School of Public Health

** The quotes from this piece are based on a twitter chat #hchlitss moderated by Kathleen Hoffman and RV Rikard held on October 18, 2012 with D. Turner-Lee.

***Content directly from Mama’s on Bedrest gathered from the Office of Minority Health

World Mental Health Day

Today, October 10th, is also World Mental Health Day.

 “Mental illness affects all of us, but there are still many myths and misconceptions about these disorders,”

Rosalynn Carter, Founder

Carter Center’s Mental Health Program 

I am re-posting (with a few additions) a post I wrote in May.

How do we de-stigmatize mental illness?   Reframe the discussion.  Okay.

So….What is mental illness?

It is a disease of the brain.

Brandon Staglin and his family want to drive the discussion of mental health in the right direction.  They are funding research on brain disease.

In 1990, Brandon was a freshman at Dartmouth College when he suddenly began experiencing strange symptoms.  “He felt a strange lightness around his right eye and couldn’t recognize his emotions. He’d stay awake for days….” (from “Brain Trust” in Forbes Magazine).  He was diagnosed with Schizophrenia.

In 1995 the family went public,  holding a yearly music festival on their vineyard in California to raise money for the cause.  They founded the International Mental Health Research Organization raising $140 million for schizophrenia research.  Recently, Brandon’s father, Garin, with Patrick J. Kennedy, have started One Mind For Research .

One Mind for Research’s plan to work smarter and share resources through public and private partnerships has the power to help us make more progress on every brain disorder from schizophrenia to traumatic brain injury.

Do we fault people for getting strep throat or pneumonia?  Understand this. The brain is an organ that can get sick just like the stomach or lungs.   Funding research from this perspective would be a huge step in the process of reducing the stigma of “mental illness.”

Join the cause.  Blog about mental health today , de-stigmatize mental illness AND donate to research on diseases of the brain.

“Great Things Are Possible”

Ask a scholar of human rights a seemingly innocuous question and suddenly you are transported into another world.  As Nicholas Cooper observes,  “People in United States are more familiar with civil rights language, than human rights language.”  That’s what you’ll find while exchanging ideas with Cooper.  For example, when asked to define a “rights-based approach to health,” Cooper has a ready answer:

Human rights-based approaches broaden “development” to include agency, empowerment, and duties. Human rights approaches identify duty holders (principally states) and duty bearers (all people).  They seek change by empowering rights holders to seek, advocate, and get their freedoms and entitlements…and empower duty bearers to respect, promote, and fulfill those rights. “

Okay, lost me.  Start out with the basics.  So Cooper backtracks.  “If I have a right to health, others have an obligation to respect, protect, and fulfill that right…If I have a right to freedom of religion, others have a duty (or obligation) not to violate that right.”

That makes sense.  Viewing health from a human rights perspective changes the strategies used in health communication, health education, policy and program design.  Over the past 8 years, Nicholas M. Cooper has been actively involved in making the connection between human rights and health, and translating public health science into rights-based action.

This language barrier and the lack of knowledge of human rights law leads to many missed opportunities.  “We need people who can speak both languages, and who have a willingness to act,” Cooper explains.
Human rights are derived from international and national law, legislation and treaties.  “Health is definitely a human right established by the United Nations Covenant on Economic, Social, and Political Rights Article 12, among others,” Cooper explains.  From this perspective, Cooper has acted as a Consultant for UNICEF in the Middle East, an International Program Development Participant in India and most recently as Child Protection Officer after the earthquake that devastated Haiti in 2010.

According to the World Health Organization, the right to health does not mean that everyone must be healthy, but it does compel governments to create conditions so that everyone can be as healthy as possible.  Cooper clarifies, “The right to health … includes the determinants of health.  Food, water, housing, etc.  As the preamble to the WHO Constitution says, ‘health is not merely the absence of disease.’”

So, if health is a human right, how do we assure that it is respected?  By “empowering people to claim the right, empowering others to respect, protect, and fulfill those rights,” Cooper explains.  “The human rights approach is about capacity building.” In other words, the human rights approach is about teaching everyone, those in and outside of government about their basic rights.  “So, a human rights approach would, say, give people the information, tools, and processes to recognize and act on human rights, “says Cooper.

At Harvard’s Francois-Xavier Bagnoud Center for Health and Human Rights, his work has focused on the protection of children and youth using human rights and sustainable livelihoods approach.  This approach focuses not only on addressing risk and vulnerability, but also on providing developmental supports and opportunities that are protective and promote success and resilience.

 In the United States there has been a long discussion about affordable care.  But from a human rights perspective it is clear. “Affordable care is essential to have a fair society.  The US does have an obligation, especially given its capacity to do it. But, US judges also don’t know how to handle human rights law,” Cooper observes.    At the FXB Center there are courses available to teach judges and  lawyers about human rights law.

According to Cooper, the human rights approach is about giving people the information, tools, and processes to recognize and act on human rights.  “Talk about Human Rights  in education campaigns, talk about them to a hospital administrator, make budgets based on Human Rights.”

“Too often, public health science ends with a journal article, not action.  There needs to be follow up and implementation.  There is so much we know, but so little is implemented,” Cooper insists.  That’s why Cooper acts by conducting water and sanitation education, instructing on malaria and HIV/AIDS transmission, and exploring how new technologies can be used to identify need and deliver assistance in humanitarian and development settings.  And he wants others to act.   “Great things are possible; how do we get there with what we have? Human rights exist (in law). Global health issues exist. You are affected. See and act.”

A diagram on health and human rights can be found at http://www.who.int/hhr/HHR%20linkages.pdf

Based on twitter chat held on October 1, 2012.  Full transcript can be found at #hchlitss The Health Communication, Health Literacy and Social Sciences Tweetchat

More information on Nicholas Cooper can be found on LinkedIn.

For more information on the Francois-Xavier Bagnoud Center for Health and Human Rights click this link.

This post gives people a terrific list of USEFUL things to do during Breast Cancer Awareness Month.

MBCNbuzz

by Holly Raby, guest blogger

Spoiler alert- I’m going to reveal one of the latest Facebook games going around!

In past years, women have been asked to update their Facebook status with their bra color, the location of their purse, and other odd statuses in the name of Breast Cancer Awareness.  One of this year’s versions is to post a heart as your status.

This is supposed to promote Breast Cancer awareness.  Can anyone tell me how, since one of the rules of the game is “if anyone asks you why you have a heart as your status, don’t tell them”?  What’s the point?  How does that spread awareness?  And besides, isn’t everyone already aware of Breast Cancer?

How about something more useful?  If you want to do something meaningful for October, do something that will actually help yourself or someone else.  Don’t settle for posting a heart and buying…

View original post 531 more words

E-Patient Advocacy for Rheumatoid Arthritis: Annette McKinnon

Annette McKinnon is happy with the care she gets as a Canadian citizen. “Our healthcare system covers everyone. We all pay through taxes but all are in the group.  Doctors visits, physicals, imaging, most lab tests are fully covered. I know that a serious or lengthy illness will not bankrupt me.”

Being a patient in Canada has been important since McKinnon has Rheumatoid Arthritis (RA).  RA is a chronic, degenerative, autoimmune disease.  The body’s immune system starts attacking itself, especially the membrane surrounding the joints.  It is very painful and destructive.  RA is also a systemic disease, meaning the whole body is involved.  There is no cure for it, but the earlier it is caught, the better an individual’s chances of going into remission.

McKinnon also advocates for patients with RA. “RA changed my life plan, family dynamics and career. “    She has had RA for 30 years.  When she first began to feel bad, she went to her physician but he didn’t believe her symptoms.  “My GP (general practitioner) thought I was hysterical.  I tried another doctor. That GP said take 12 aspirin a day and come back in 3 months.”  Because of the delay in her diagnosis, McKinnon has joint damage,  “if I meet you, you can see by my hands I have RA.”

This is one of the reasons McKinnon advocates for improved education and awareness, especially among providers, “Not much time is spent on the musculoskeletal system in medical school I hear so we need to bring awareness of symptoms to Primary Care Physicians.”

Since her diagnosis, treatment for RA today has improved.  Yet because of the disease’s complexity, medications used in treatment regimes are even more complex. Corticosteroids and immune suppressing medications, like methotrexate, are used.   Treatment requires sophisticated multispecialty care.  Unfortunately building a specialist care team is often left to each individual patient.

That’s why support and information sharing can be so valuable.  “I… learned to advocate starting with me.” McKinnon says. “I share information with others with RA and provide support through online groups.   [I  also do] mentoring and patient partner activity in real life.”

McKinnon is also on the Board of the Sjogren’s Society of Canada.  Sjogren is another autoimmune disease characterized by damage to the salivary glands resulting in difficulty swallowing, chewing and speaking as well as affecting the tear glands causing sun sensitivity and dry eye.  It also can affect other organs. Around 30% of those with RA have Sjogren.

Additionally, McKinnon’s advocacy “centers on early diagnosis and treatment and access to very expensive drugs.”  This is because medications are not covered by Canada’s universal system unless you are low income.  She has also advocated on a national level working to get certain drugs approved by Health Canada, “I help advocate on how the healthcare money is spent and what diseases are funded for research.”

So, though she wishes that she did not need to rely on her husband’s insurance coverage to pay for her medications, she is otherwise satisfied being in Canada single payer system.  “I hear that a health plan member in USA gets on average 33 letters a year. I get none. No paper work.“

And she feels that’s something to smile about.

This post is based on the twitter chat #hchlitss conducted on September 27, 2012.  The transcript is available.