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Discipline or abuse?
Research guides practice; practice guides research. Health professional education for resource -constrained practice
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CORRECTION: The discussion paper posted here yesterday-

CORRECTION: The discussion paper posted here yesterday- Health Literacy as an Essential Component to Achieving Excellent Patient Outcomes -  was not commissioned by the IOM as I stated.. It was announced in the IOM newsletter. As indicated in the note accompanying the paper “The views expressed in discussion papers are those of the authors and not necessarily of the authors’ organizations or of the IOM. Discussion papers are intended to help inform and stimulate discussion. They have not been subjected to the review procedures of the IOM and are not reports of the IOM or of the National Research Council.”

New IOM Discussion Paper on Health Literacy



This discussion paper commissioned by the IOM Roundtable on Health Literacy was released yesterday. I always watch for these papers by thought leaders in the field to see the evolution of health literacy concept, measurement and intervention. 
 
I am quite disappointed this time.  
 
One statement of fact jumped out at me right away. The  paper lists an increase in the fertility rate among demographic trends behind the increasing size and diversity of the population. But, according to the CDC the US fertility rate is at an all time low. Births declined by 10% last year and the Census Bureau reports population growth has slowed to its lowest rate in decades.  The authors are correct that diversity continues to increase. Pew reports the number of immigrants in the country doubled to 46 million between 1990 and 2013. (But the Pew Hispanic Center announced in April 2012 that immigration from Mexico has stopped and perhaps even reversed.) Diversity of cultures and language is indeed a challenge for the healthcare system that adds urgency to health literacy issues.
 
The concept of health literacy presented in the paper seems confused. First health literacy is presented as a cognitive deficit that leaves patients  “unable to understand and act on health information”, placing the problem in patients and assuming it is intractable, therefore requiring clinicians to over come or manage the problem. The approach is necessarily information-centered and provider-centered, not patient-centered.  
 
The authors also note that WHO considers health literacy a personal and community asset, but seem not to notice this is contrary to their discussion focused on low health literacy as a risk to patients and the system.  Recommended universal precautions are not  sufficiently “on the ground” to change practice and represent long held heath education principles (e.g. educate using plain language, do a learning needs assessment).There is an implied assumption that universal precautions, overseen by a new office in healthcare organizations, is the whole solution. These precautions are common sense, but they are insufficient to address true cognitive impairment in the elderly population, or to overcome what Doak Doak and Root described as gaps in logic, language and experience, the origin of provider/patient communication problems with both native and foreign-born patients.
 
The authors suggest that efforts to develop an organization’s employees' health literacy skills  (knowledge of negative impacts of low health literacy in patients, employee-employee communication) can "empower communities to be active partners in their care.”  This is faulty thinking.  Establishing the attitude that  patients are incapable of understanding and acting on information, and so unable to learn and do what is needed to cope, recover, and improve health, disempowers patients and providers alike, makes patients unnecessarily dependent on professionals, and perpetuates the problem. The authors close with a call for "trusted partnerships” between providers and patients; that requires providers to trust patients.   As long as we say that what we need to make the healthcare system work is a smarter patient, we are stuck. 
 
One more thing: Americans spend about one hour per year in a clinical setting. What about health literacy in the other 8764 hours?

MLK Day of Service

Today volunteers are out all over Seattle and King County. It's MLK Day, a national Day of Service in memory of Dr King and his teaching that “Life's most persistent and urgent question is, 'What are you doing for others?”
 
My friend and co-author Liz Moore (aka the data whisperer) and I worked with folks fromCityFruit. Since 2008 this group has been promoting cultivation of urban fruit to nourish people, build comity and protect the climate. Last year they tended, harvested and distributed 6500 pounds of fruit grown on trees in Seattle city parks.  Liz and I worked on a hillside up behind the Amy Yee Tennis Center is south Seattle. It turns out there are 30 some  very mature long neglected apple and pear trees there, perhaps a former orchard.  City Fruit's 5 year plan includes rescuing the trees from ivy, blackberry and underbrush, restoring them to productivity, and sharing the harvest with neighbors and local food banks, and selling some to Seattle restaurants to sustain the operation.  Liz and I rescued three apple trees nearly strangled by ivy and blackberry. And we learned something about our city, met some of our fellow citizens and left the world a little better place. Thanks, Dr. King,  for the inspiration and leadership. Thanks to  UW and United Way of King Countyfor organizing the day of service. Thanks to all who serve, and all who accept service. ss

Reflection on 2013: Health Literacy Promotion Goes Global, Beginnings Guides Renewed

New  2014 Editions
If you have not see the new Beginnings Pregnancy Guide, and the new Beginnings Guia para Embarrazo, and the new Beginnings Parents Guide, take a look!  Great new photos.  All content checked and updated.  A scan code instantly links your mobile device to new sections of  BeginningsGuides.com direct from the Guides. For parents there are Pregnancy Resources and Parents Resources that we have investigated and found to be reliable, easy to use and free of advertising. You service providers will find lots of useful tools in the Resources for Beginnings Users section.  Also in 2013, we closed the warehouse so now all our printing, inventory management and fulfillment are in one place, at ColorGraphics Seattle. If you distribute Beginnings by mail, we can print your envelopes, address, stuff
and mail them and manage returns. What a Special Edition with program specific content and your program name on it? We can do that, too.
 
Speaking of the websites
BeginningsGuides.com had 125,000 visitors in 2013. HealthLiteracyPromotion.com 
had 50,000 visitors.  2000-4000 of you read the blogs each month. And we have
900 Twitter followers.
 
Most read blogs
Notes from the Field CenteringPregnancy, Promoting Maternal Health Literacy“Health Illiteracy” is Not a Disease
 
Promoting Health Literacy Nationally & Internationally
Cape Town, South Africa April 17-19, 2013
I got to keynote the first conference on Building Children’s Nursing for Africa organized by Univeristy of Cape Town School of Nursing and Red Cross Children’s Hospital. My theme:empowering mothers for health. Now I am delighted to be serving as a guest editor with Prof. Minette Cootzee for a special edition of South Africa’s national nursing journal Curation is featuring 12 articles from the conference.
 
Vancouver, BC, Canada May 1-4, 2013
I participated in an invitational international workshop that initiated a new “knowledge hub” at University of British Columbia. The consensus was that health literacy involves patient, provider and system. I argued that this formula includes the provider and the providers’context (the system) but omits the patient’s social context. View participants’ brief videos on health literacy here.
 
Bozeman, MT, USA  August 19-20, 2013
I got to keynote the Montana State Early Childhood Council’s first Family Support Summit.  Theme: promoting maternal health literacy through home visiting. In March 2014 I will return to MT to work with all staff of Ravelli Head Start in Hamilton, MT whose director Kristin Segall recognized at the Summit that “Health literacy is everybody’s job.”
 
Washington DC, October 26-28, 2013
This was a whirlwind as I presented on theParents as Teachers Health Literacy Demonstration Project at the Health Literacy Annual Research Conference, and presented a workshop with colleague April Thayer of WellPoint on the upcoming pilot project to integrate health literacy promotion into CenteringPregnancy and field test the newMaternal Health Literacy Self-Assessment.

Sydney, Australia November 26-29.
I was awarded a travel scholarship to attend University of Sydney’s conference on health literacy and participate in the second meeting of the Worldwide Universities Health Literacy Network.  I participated with a group of academics and patient representatives to plan an international collaboration on developing health literacy as a community asset. That is just getting underway.

Health Literacy Training Videos Take 2
We planned to have the free training videos produced with the National Network of Libraries of Medicine Pacific Northwest Region up on the websites in August. But we got good criticism from our reviewers and we are revising accordingly. Stay tuned.

On to 2014. I so appreciate your partnership in serving mothers, foundation of a healthy society. SS

Worldwide Universities Network Health Literacy Meeting

It was my great good fortune to attend two  International multidisciplinary meetings of Health literacy researchers, practitioners and policy makers sponsored by the Worldwide Universities Network.  I have previously reported on the   May 2012 meeting at University of Southampton, England. That meeting was dominated by Europeans and characterized by lively debate that fleshed  out  themes and urgent issues.

The second meeting  took place in late November  2013 at University of Sydney.  The location attracted the  Australian  experts and was notably influenced by the routine participation of consumer representatives in healthcare, research, policy making,  and fittingly in this meeting.  I was glad to reconnect with a number of researchers I met in Southampton.

Our purpose in Sydney was to formulate international collaborative projects.  The group of about 25 divided itself by interest area using themes that emerged from the first meeting.  Noting that project groups were forming  around research questions related to measurement, medical education, and disease-specific questions, I proposed "health promotion approach" as an alternative.  That attracted four academics and three consumer reps from Australia and the Netherlands who work with various  populations  (e.g. Lebanese, Vietnamese, Dutch, Aboriginal). We want to learn who are the "gatekeepers" of health in families and communities; how have they been identified; and how have they been or how could they be  engaged to determine what supports individual and collective health literacy.  We will necessarily start with a lit review. Stay tuned.  And put Bondi Beach, a suburb of Sydney, on your bucket list.

Maternal Health Literacy: Foundation of personal and public health

Part 1 Maternal health literacy as skills

A life skill is a collection of skills necessary for full participation in everyday life. Maternal health literacy is a life skill that mothers use to manage personal and child health and healthcare.  It has been defined as the cognitive & social skills that determine a mother’s motivation and ability to act on information in ways that improve health (Renkert and Nutbeam, 2000).
 
Cognitive skills are used to understand information; they include basic literacy skills, reading and numeracy (ability to use numbers). A mother might use these basic skills to learn about ear aches, and make an appointment to take her child to see a clinician. So basic literacy skills are the essential foundation for health literacy.
 
Social skills are used to make personal meaning from information, including speaking and listening. The mother whose child has an ear ache uses these skills when she discusses with the clinician the information on ear aches to understand why her child has them and how she might prevent them.
 
Reflective skills combine cognitive and social skills to think critically, make choices, formulate plans, and take action.  The mother in our example uses reflective skills when she mulls over what the doctor said, what she read, her experience of her child’s ear ache, her actions and parenting practices, and her discussion with her mother about treatment options and possible preventive measures. Some literacy scholars say that reflective skills are so essential to applying information in context that it should be classified as a basic skill. So we could say there are 4Rs: reading, ‘riting, ‘rithmatic, and reflection.
 
Health literacy means empowerment (WHO 2013)
A health literate mother combines all these skills to make health related choices and transform those choice into desired action and outcomes. That is the World Bank’s definition of empowerment.  Say the mother chooses to stop putting her baby to bed with a bottle. She takes that step, and she enjoys her desired outcome, a happy ear-ache free baby. We say this mother is empowered for health. 
 
Her health literacy skills enable her to minimize risk, maximize protective factors, and optimize health promotion. In this way, a mother’s health literacy forms the foundation for her health and her child’s health throughout their lives.
 
Many factors, in addition to skills, interact to determine a woman’s maternal health literacy. More on that next time.

Notes from the Field CenteringPregnancy, Promoting Maternal Health Literacy

I’ve been in Washington DC where I co-presented a workshop at CenteringHealthcare Institute’s fourth national conference. I was drawn to this organization the first time I read their motto: Transforming care through disruptive design.
 
CenteringPregnancy (CP) is a rapidly spreading model of group prenatal care. Eight to 12 women with similar due dates have their prenatal visits together. Each has the usual individual health assessment with an obstetrician or midwife in the group space. Meanwhile the rest of the group engages in “self-care”; they weigh themselves, take their own blood pressures and chart the data.  They can read their own lab results and ultrasound reports. The rest of their 1.5 -2 hour appointment is dedicated to  education and support through facilitated group discussion and activities.
 
Reimbursement levels and processes are the same as for conventional individual prenatal care. The schedule of visits and core content follow ACOG* guidelines. 
 
Process trumps content
CenteringPregnancy’s founder and CEO, midwife Sharon Rising, emphasizes, “Content should not get in the way of process.” The women talk about what they want to talk about. There are games, activities and multiple ways of learning. Women test out what they've heard; they explore their cultural beliefs and share sensitive issues like violence that are only rarely discussed in traditional prenatal care. They build community and function as a support group. 
 
March of Dimes wants all mothers to get prenatal care in CenteringPregnancy,” says Judy Gooding, MOD’s Vice President for Signature Programs. No wonder.
 
She describes CP as an evidence-based program to prevent preterm birth and disparities in infant health outcomes. MOD’s  2012 Preterm Birth Report card shows the US rate at 11.7% of all births. Among women in CP the rate is 5.5%. The national low-birth-weight rate is 8.1% compared to CP’s 6.3%
 
CP meets the Institute of Medicine’s goals to make healthcare services safe, patient centered, equitable, timely and efficient.  Participating mothers seem to agree. There is no waiting time, no need to retell their story to strangers. They build a relationship with the provider. What they like best is being with other women.
 
Sharon Rising says, “Facilitation is the secret sauce.” Clinician facilitators are trained not to answer questions or instruct the group, but rather to elicit the group wisdom and listen to what drives behavior. They come to understand and appreciate the needs, beliefs, and struggles of the women and the complexity of their live. Throughout the conference there were reports of clinicians coming out of CP sessions where they completed the equivalent of 10-12 prenatal visits in 2 hours  beaming and talking in superlatives about their experience.
 
All this makes group prenatal care the ultimate environment for promoting maternal health literacy. I’ve been working for a year with WellPoint, the health insurance giant,  to design a pilot to test the hypothesis that CP promotes MHL as a side effect, and with facilitator awareness, tools and strategies it can be very effective.More on that next time. Meanwhile, visit http://www.centeringhealthcare.org/
 
Stay tuned. ss

Government shutdown is all FUD

FUD: Fear Uncertainty &Doubt. That is the foundation of the extreme House Republican’ position on the Patient Protection and Affordable Care Act of 2010.  That’s why they call it Obamacare- in order not to say “protection” or “affordable”; and  to hide the fact that the law was enacted 3 years ago, before the President was soundly re-elected running against an opponent who vowed to repeal it.
 
FUD, initially an IBM strategy to eliminate market competitors by spreading fear uncertainty and disinformation about their products, seems to be working for the House Republicans. At least to some degree, for now. Polls and analyses of social media suggest that some people favor the Affordable Care Act while opposing Obamacare.
 
Home visitors: “Obama snoopers” = FUD
I ignored the FUD like a parent ignoring a toddler’s temper tantrum until I saw the Fox “news report” about the Affordable Care Act’s expansion of home visitation. That’s  a preventive strategy in which public health nurses, social workers or trained paraprofessionals connect families to healthcare and community resources and offer health education and social support.  It’s origins date back to the 1800s. Programs are run by county health departments, school districts, foundations, and private-public partnerships. Home visiting programs are open to poor parents who request assistance.
 
It’s worth noting that in many countries, home visiting has long been standard for all parents, because they acknowledge that parenting is a challenge and everyone can use assistance. And because research shows it improves child developmental outcomes and has immediate and long-term benefits that extend to entire families and to the healthcare, education and justice systems. My research  shows that parents in home visitation significantly improve their health literacy, capacity to manage personal and child health and healthcare.
 
Pure FUD
A Fox announcer and a “business expert” called home visitors “Obama snoopers”.  They said  in this “brand new federal program”, “government home inspectors” make random, unannounced  “forced home visits” to snoop on parents.  This is not news. This is pure FUD - disinformation (lies) that specifically intends to instill fear, uncertainty and doubt about the Affordable Care Act, to prevent people from learning they can afford good healthcare coverage.
 
I have worked for decades with home visitors and know them to be among the most  caring, dedicated, respectful people on the planet, unlike the FUDders on Fox and in the House.
 
FUD won’t work for long. Yesterday, the heart of the Affordable Care Act started (keep saying the real name), opening access to healthcare for millions of poor and uninsured citizens. Almost 3 million people visited www.heathcare.gov. State exchanges were similarly overwhelmed.  People are about to find out that the Affordable Care Act makes good healthcare coverage affordable -for them. That will help them see through the FUD.  Insurance companies are helping too. They are enrolling people they previously rejected because, with the ACA, it’s good for business. Healthcare executives are calling for more doctors, nurses and allied health professionals - doesn’t really sound like a “job-killer” does it?
 
On the other hand, the House Republicans just put hundreds of thousands of people out of work in hopes they can FUD us citizens of the richest country in the world into continuing denying healthcare to poor people and sick people in order to preserve the freedom of the rich to get richer.
 
 
 
 

Research, education, and maternal health literacy Mothers invest time for their children

AHRQ and the journal Demography report research finding that the more education a mother has, the more time she spends caring for and playing with her child. This seems to suggest that education makes the difference, or that less educated mothers are less invested in their child’s health and development. 
 
More likely it is the advantage that afforded educated mothers opportunity to go to college and the further advantage that accumulates from higher education....more money, more resources,  more skill, better jobs, more discretionary time and energy. All these things create more options and opportunities to obtain, understand and use information and services in ways that enhance personal and child health - maternal health literacy.
 
The other side of the coin is that mothers who have less education come from less advantaged backgrounds, start with fewer resources and opportunities, are relegated to low paying jobs, and work more and to earn less.
 
I was a single  mother with a high school education and few marketable skills.  I worked three part time jobs - one to pay childcare so I could work the other two to pay the rent and take a course here and there.  It took 12 years to get my BA while working full time. I was in my 50s by the time I could afford a PhD. My daughter got less attention than I wanted to give her.  So the reports are right -- until they say that educated mothers  “invest more time”  in their children than less educated mothers.
 
If you don’t have money, you have to invest more time for your child than with your child. Less educated mothers are no less invested in their children. Lack of income and education prevents parents from making the kinds of investments they want to make in their children.  I hope economist James Heckman is right when he argues that it is the quality of parenting, more than the number of parents, their income or education that determines outcomes for children. But that, too, is an over simplified argument.
 
References
AHRQ Research Reports Sept 2013 www.ahrq.gov
 
Kahil A, Ryhan R, & Corey M (2012) Demography 49 pp 1361-1383
 
Heckman,  James J. (2013) Giving Kids a Fair Chance (A Strategy That Works) MIT Press, Cambridge, Mass.  ISBN 978-0-262-01913-2

Top Reasons to Promote Maternal Health Literacy #5 (#1 if you are talking to a legislator or business leader)

 
Skills beget skills. Cognitive and social skills needed to successfully manage personal and child health and healthcare are those needed for success in life across cultures. They are skills that empower people to  be what they want to be, to make choices and transform those choices into desired actions and outcomes. 
 
These life skills develop most easily in early childhood given a stable supportive family environment. Disparity in brain development in children growing in disadvantaged vs enriched environments becomes apparent in the first year.  Quality of family life matters more than the number of parents, their income or education. But poverty and accumulated disadvantage prevent parents from doing their best to sustain the stimulating home environments that support optimal development, especially when they themselves lack skills, resources and role models. Early intervention --- early childhood education, parenting training, family support and home visitation programs--- can produce positive and lasting effects on children in disadvantaged families.  
 
Nobel Laureate and economics professor James Heckman, makes the business case for shifting public policy to support programs that offer parents information, choices and assistance.  Promoting health literacy means providing direct supplemental assistance that specifically and intentionally enables parents to develop and hone the range of life skills used to participate in healthcare and manage personal and family health at home.
 
Must read: Heckman,  James J. (2013) Giving Kids a Fair Chance (A Strategy That Works) MIT Press, Cambridge, Mass.  ISBN 978-0-262-01913-2 
In addition to Heckman’s monograph, the book includes illuminating commentary by 10 experts from multiple disciplines.
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