But during a 24-hour stay in the hospital, your surgeon spends an hour or two in the OR with your child and and if you are lucky, another 30 minutes talking with you about your child.   The rest of the time is spent in the care of nurses.  And we have had some AMAZING nurses at MEEI… people characterized by compassion, intellectual curiosity and protectiveness of you and your family.   When I am at MEEI I feel supported by the nurses as though they are our advocates, care takers and friends.  In our very abnormal reality, our relationship with nurses can at times make our stay in the hospital enjoyable! So thank you to all nurses who take the time to treat patients and their families as allies.  Thank you amy, annie, mary, sylvia, jennifer, nancy, joan, cheryl, shanna and all of the other pediatric and OR nurses who make such a positive difference in our lives.   And thank you to the wonderful nurses in my personal life…dad, barbara,  nadine, sheddy, jerry…. I know  our lives and others’ benefit from the care you provide.

Here is a quote that I read in a research article that reminded me why nurses are so important to the quality of our health care system:

Nurses are interested in the whole person- that is, the psychological, and the spiritual.  Nurses are interested in the individual, the family, and the community; in sick persons, those recovering and healthy; in elderly persons, adults, children, those newly born, and those as yet unborn.  Nurses are interested in the cellular and behavioral; in the environmental, and in the institutional; in health and in illness; in emotions and the unconscious…. Because of this very broad focus and its encompassing perspectives, nursing research is by its very nature eclectic.

Morse, J. M., & Niehaus, L. (2007). Combining qualitative and quantitative methods for mixed-method designs. In J. Wuest, & P. L. Munhall (Eds.), Nursing research: A qualitative perspective (pp. 541)

Click here or read below for the latest update on Google Health.

3/01/2010 06:00:00 AM

As we exhibit at the Health Information and Management Systems Society (HIMSS) trade show this year in Atlanta, we want to share with you some of our latest thinking. Google Health has been on the market for a little over two years, and in that time we have seen a growing understanding of the value of consumers being able to own, use, manage and share their medical data online with whomever they choose. While companies like ours work to build technologies like Google Health to make this a reality, we’ve also seen growing support from the U.S. Government. President Obama has included incentives for doctors to adopt electronic health records (EHRs) in the the American Recovery and Re-Investment Act of 2009 (AARA), and in recent months there have also been a series of Health IT provisions around “Meaningful Use” and EHR Certification all of which should help empower consumers with access to their own information. (Read our recent op-ed for more info about this topic.)

At Google, we understand that changes in the health care industry take time and persistence, including health IT. We have been steadily analyzing feedback from our user surveys and field studies to help make Google Health more useful and relevant to a broad set of consumers on a daily basis. People have been telling us they want more tools to personalize, customize and track their own medical information. These are directions we’re certainly exploring, and if you stop by our booth this week at HIMSS you can see a demo of what we’re working on.

While we work to refine the Google Health product, we also continue to pursue integration agreements with providers to make it even easier for people to access their own medical information. We’ve learned over these past two years that getting a current and past medication history assembled and ready in case of emergencies is one of the strongest value propositions for using an online Personal Health Record (PHR). So today at HIMSS, we’re announcing an integration with Surescripts, the leading electronic prescribing network in the United States, to help accelerate the availability of prescription drug history to our users. The Surescripts network connects doctors who prescribe medication to all of the nation’s major pharmacy chains, leading health insurance plans and pharmacy benefits managers (PBMs), as well as more than 10,000 independent pharmacies nationwide. Surescripts provides access to prescription benefit and history information on behalf of health insurance plans representing 65 percent of patients in the U.S.

Recognizing that hospital and ambulatory data is critical to our consumers, we’re also announcing a future integration with the University of Pittsburgh Medical Center (UPMC) that will give patients the ability to add health information to an EHR maintained by doctors using their own Google Health PHR. UPMC is working on this integration with Google Health,Carnegie Mellon University and their technology partner dbMotion. Finally, we’re announcing the launch of three more integration partners: Citizen Memorial Healthcare (CMH), a rural healthcare network providing care to residents in southwest Missouri, Iatric Systems, an integration consultant, which can facilitate Google Health integrations for hospitals and healthcare systems, and the Withings WiFi Body Scale, which allows Google Health users to seamlessly update their weight and other data to their online profiles.

We hope to see you this week at HIMSS. Come by our booth, see our demo and say hello.

Posted by Alfred Spector, Vice President of Research & Special Projects

I just read a passage that resonated with me and I want to share it with you.  It’s written by an anthropologist who learns about health care issues from the perspectives of families by talking to them, accompanying them to doctors’ visits and videotaping interactions.  She had this to say:

Not surprisingly, a key issue for families concerns

whether or not they can trust their clinicians. The most

minute nuances and gestures of health professionals (esp.

doctors) are routinely scrutinized, becoming a subject of

storytelling and puzzling. What are they trying to tell me?

parents wonder. What are they hiding? Do they treat me

this way because I’m black? A man without a job? A single

mother? Do they think I’m a “ghetto mom”? Do they

think I’m abusing my child? Are they experimenting on my

child? Are they ignoring me because I’m on Medicaid? Do

they think I’m not strong enough, bright enough, educated

enough, to hear the truth? These are the sorts of questions

asked by families in our research, and they are asked again

and again.

Mattingly, C. (2006). Pocahontas goes to the clinic: Popular culture as lingua franca in a cultural borderland. American Anthropologist, 108(3), 494.

A: mom, when i grow up will I still have the same voice that I had when I was three?

N: maybe, what what your voice like when it was three?

A: like it is now

N: you mean quiet?

A: yes

N: well, I don’t know.  your voice might be like it is now, or it might be different.  I’m really not sure.

A: I want to have the same voice.

N: well your voice will always be your own so no matter what, that part won’t change.  do you like having a quiet voice?

A: yes. no.  well, I go to the doctor a lot.  and i want to keep going a lot so that my voice can get louder and louder and louder.

N: we will do that, sweetie.  we will definitely do that.  but I don’t know if the doctor can make it louder.  we just have to keep trying.

A: okay, mom. (Ayrie seems satisfied for the time being)

Have you had conversations with your child that make you realize how much they are mature beyond their age?  tell us about it.

xo nora

Through my lived experience over the past two years I have learned that families with a child with a rare disease need a lot of support.   Nuclear families often live apart from their extended families. Hospitals can not meet all of a families’ outpatient needs.  Church membership and attendance has declined.   Schools are unsure how to meet the special needs of children and their families.  So the support needs to come from a new source.  Or perhaps from an old source, community, a construct that we currently find ourselves disconnected from in this society.  But I know for certain is that one nuclear family can not and should not have to meet all of the needs they have. Families need financial, emotional, practical and informational support and yet there is no wide-spread existing support system.  What I am proposing is not a new program, but a new way to think about relationships between people in communities.

But let me digress for a moment to tell you that my other passion is education.  I was a high school teacher, a charter school administrator and a program manager for a high school program with the Student Conservation Association and hold a MA  in Research Methods from the University of Pittsburgh’s School of Education.  When my son was diagnosed with a rare disease, JORRP, my world turned upside down and suddenly the field of education seemed less important and my son’s life and my family’s functioning became the only things that were important.  But as you live life with your child’s rare and unpredictable disease, you experience moments of crisis and despair, but also clarity and purpose.  I found my mind making connections between the experience I was having  with the health care system and my passion for improving the educational system.

I capitalized ’Education’ and ‘Health’ in the because I have experienced them both to be systems that are so important to people’s lives, yet so large and sometimes impossible to navigate that they ultimately lose the ability to effectively meet people’s needs.  There is high quality and high access to both in pockets, but just as many gaps.  I see a lot if similarities between the angst a parent must feel when they are unable to find a school that is safe, rigorous and nurturing for their child and the despair that a parent feels when they can’t get the insurance they need or a doctor that is able to effectively treat their child with skill and compassion.  In both cases the quality of life of that child, and therefor the quality of life of that family, are significantly impacted.  In the most extreme cases, the actual life of that child is in danger.  There are schools where extreme violence and rape occurs on school grounds.  There are children that have a reduced life span because they can not access the best doctor for their particular medical condition.  And in both cases a parent can do everything within their power and ultimately feel quite powerless with the needs of their child continuing to go unmet.

So I again come to the proposition of a community response.   A tipping point where people connect with others and help them meet their needs, be those needs educational, health related, or other.  It probably seems unlikey that the Harlem Children’s Zone be quoted in a blog post for rare disease day, but Geoffry Canada hold a similar vision and he’s proving that it can work.  He is changing a community through changed norms, expectations and systems of support.  He uses an unofficial 65% rule which says that if you can change the behavior of 65% of the people in a community, you can reach a tipping point and create a new normal.  As you read the excerpt below, think about what a similar vision would look like for meeting people’s health related needs.  If you are inspired or have ideas, please leave a comment.

xo and all the best to you and your family,

Nora

Quoted from PEN Weekly News Blast:

As part of its issue devoted to an in-depth look at the Harlem Children’s Zone (HCZ), City Limits interviewed its founder and director, Geoffrey Canada. In the question-and-answer, Canada explained that the only marker of success for the antipoverty initiative is whether its participants graduate from college. All other measures are “interim.” He concedes that by this metric, it’s difficult to tell if HCZ is working 10 years through a 20-year cycle. However, the program uses these same interim tests to monitor outcomes at each step, starting with its first, Baby College. Canada has set a 65 percent positive student outcome as the universal goal — the so-called tipping point — but says there is no science behind this number; it’s common sense. “Kids do what their friends do… If you get a whole bunch of kids doing positive things instead of negative things, should you expect that to have an impact on other kids? Absolutely.” HCZ has certain underpinnings that cohere into a philosophy, Canada explains. “One is that you create pipelines for kids and you keep them in it, you don’t stop.” Another is working on a large scale: “If you have 5,000 kids in trouble, and you serve 200 kids, you’re not going to change the outcome.” Third and fourth are constant evaluation of outcomes, and rebuilding the community that hosts your program. “I want for my kids what every middle-class person wants,” says Canada. “That’s my science… When the middle class don’t want it, I don’t want it.”

click here to read the original article.

By entering into a different type of a relationship with the doctor where we put together all of the pieces to understand the complete story, my experience of sickness and healing will be quite different.  And by telling and story and being heard, I create a deeper level of trust with my physician, allowing me to share some of the burden.  This is what has happened to me with my son’s surgeon.  I feel that he listens and tries to understand.  Since we started to go to him I feel that my emotional weight is a little bit lighter.

The first article I’ve read about Narrative Medicine is:  Charon, R. (2009). Narrative medicine as witness for the self-telling body. Journal of Applied Communication Research, 37(2), 118-131.

Here are some quotes that resonated with me:

page 119

The patients are ill; the doctors are well. The patients are fearful of illness; the doctors are fearful of failing to cure that illness. The patients blame the doctors; the doctors blame the patients. The patients feel shame; the doctors seemingly cannot help but inflict shame. The social and cultural chasms separating doctors and patients are often vast as well*race, culture, gender, sexual preference, socioeconomic status, spiritual beliefs, education level, scientific acumen, language spoken may all constitute insurmountable barriers between these two humans, one in need of help and the other trained to provide it.

page 120

Narrative medicine surprises us into realizing that health and illness, pain and suffering, aging, dying, birthing, functioning despite injury, making choices about our biological states are pivotal times in which we become who we are, discover who we are, accept who we are, rage or pleasure toward who we are.

pager 122

I changed my office routine to begin each encounter with a new patient with these two sentences: ‘‘I will be your doctor, and so I must learn a great deal about your body and your health and your life. Please tell me what you think I should know about your situation.’’ Then I sat in my chair without writing or typing to absorb what the patient said. It was a remarkable transformation. Instead of answers to the typical battery of clinical questions about medical history and surgical history and medications and current symptoms, I was receiving eloquent, singular accounts of self, the patient framing the events of illness within the events of life.

We want to unite bloggers to raise awareness and support for rare disease.

How can you help?
We need everyone – moms, dads, family, friends, medical bloggers, pharma bloggers – anyone with something to say about rare disease. There is no limit on the number of posts, the type of posts or the direction of thoughts and opinions.

If you would like to be a part of the first ever “Blog for Rare” project, email Catherine Calhoun at hellocatcal@gmail.com.  Email your links by Friday, February 19, 2010 with subject line “Blog for Rare.”

“Blog for Rare” goes live on the Children’s Rare Disease Network blog, SNiPs, the week of World Rare Disease Day (February 28, 2010).

http://www.crdnetwork.org/blog/

Please consider adding your voice to this day!  You can really write about anything, emotions, treatment, ‘the system’, growth, frustrations, joy, etc.  I need the bog entries by February 17th.

xo and thank you!!

nora