On epatients, women and poetry
A week ago, I wrote a post on crowdsourcing menopause with the intent of leveraging the collective force and spirit of women for the better good, or more specifically for our health and wellbeing as we age. I wrote the post just prior to attending the Epatient Connections 2010 Conference in Philadelphia, two of the most inspiring and provocative days that I’ve spent in some time.
You may not be familiar with the term “epatient” but it’s become a buzzword in the health world. And yet, the epatient is a concept that continues to evolve and is not entirely understood by practitioners or researchers or even by many patients themselves. However, like crowdsourcing, the epatient movement has sparked an interest in consumer engagement, participation, collaboration, sharing and connection, all in hopes, as my friend Jane Sarasohn-Kahn implies on her fine synopsis of last week’s conference, of building a foundation of trust upon which health and wellbeing can thrive.
So where do women fit into the epatient movement?
As women, we have long stood on the sidelines as researchers apply study findings in men to our health concerns, as insurers characterize natural life events such as pregnancy as “pre-existing conditions” and on a more personal note, as battle lines jave been drawn between those who insist that menopause is a disease that needs to be treated and those who want to address symptoms in a kinder, more gentler, holistic fashion. Yet, regardless of age or mandate, women need to fully engage in decisions that being made about their healthcare.
A key component of engagement is access: access to health records and notes, access to plans of action and strategies, access to our healthcare practitioners when we need them, access to the right people, to the right information and to the right line of thinking. And at times, access means going round and round and around before we are able to cross imaginary lines that heed our progress and find the path to health. My friend Regina Holliday, a Washington, DC-based patients rights arts advocate, has been leading the fight for access since the death of her husband in June, 2009.
While Regina’s fight is not gender- but people-based, she has demonstrated that women can be powerful advocates for themselves and those they care about, and that advocacy is often borne out of resolve, love and self-respect. Moreover, Regina has shown time and again that sometimes, the smallest gesture can resonate the loudest, a flick of the paintbrush, a line in a poem.
James Russell Lowell once said that “the eye is the notebook of the poet.” For Regina, the eye is her art and her mission, and the window to what has become her soul’s work. At the epatient conference, Regina stood onstage and invited a glimpse through that window. And what resonated most was her resolve self respect — as a woman, a mother, an advocate and an artist. Her path is unique and yet universal because it is about support, participation, engagement and love. And I suspect that Regina will continue to go round and round until her path is fully illuminated and she reaches her goal.
Below are Regina’s wheels. I believe that as women, as patients and as mothers, friends, wives and lovers, we can use our resolve to crowdsource and advocate for our health and well-being. What are your wheels? What is your path? And what are you willing to fight for?
Death of the Paper Transfer© All Rights Reserved. R. Holliday.
The Wheals on the Bus By Regina Holliday 3-17-10
The wheels, the wheels: they are a turning,
And past abuses do impress upon this fight.
And thoughts of riots, rights and rulings,
Spin in circles in the shadows of my mind.
I go to sleep at night and think of coding.
Is our savior high within the data cloud?
Is access to our care, as great as knowledge?
Where shall peacefulness be found?
Does freedom lie within a soup of letters?
Do PHR’s and IEP’s and EKG’s and HIT
Open doors to our gaining knowledge?
Is ARRA an acronym, or is it a primal roar?
Arghaa! Arise! An EPI pin, to stimulate
The growth of understanding,
That we are all Patients in the End.
Here, I take my stand. I can do no other;
For past abuses do inform this time,
And, two by two my Luther’s tell me
To demand my data rights ,
To be resolute, that separate is not equal,
And that no man,
Should stand
Between me and the Word.
Is 1135 a page in the Annals of Oncology about Kidney Cancer?
Or is it Volume 113 of Pediatrics no. 5 in 2004: “The Genetics of Autism.?”
Or is 1135… simply, “JESUS WEPT.”
I will see you in Galilee, Galilee, Galilee
I will see you
In the ring, the circle, the circuit,
And the wheals they are returning….
The wheels on the bus go round and round,
Round and round, And Rosa parked.
She refused to give up her seat at the table.
ICD-10, Do you intend, to save me from my coding?
Do you entreat, that we retreat?
And expect the patients, now informed and comprehending,
To sit idly by awaiting your instructions?
Physician Heal thyself,
And let empowered patients speak,
And draw attention to those that seek
A better and healthier tomorrow.
About the poem… in the poet’s words
I wrote this poem in the weeks leading up to the final healthcare reform vote in March 2009. At that point, I had done many interviews with reporters who wanted to focus on insurance reform and did not want to discuss data access, nor did most people really want to talk about viewing the patient as a whole person. So, I wrote a poem that would mention HIT, Health Reform, Autism, Child Abuse and Jesus. It is quite a heady mix. It can be hard to listen to. But patients are complex and if we truly listen to them we can change everything.
Regina Holliday
Read MoreNewsFlash: Canadian Cancer Society Recommends Against HRT Use Except as Last Resort
Researchers and representatives comprising the Canadian Cancer Society are recommending that women avoid taking hormone replacement therapy or HRT for any reason other than relief of severe menopausal symptoms that have not responded to other treatments. Wow! Talk about a newsflash!
The reason for last week’s statement is a new study published online in the Journal of the National Cancer Institute that demonstrates an almost 10% decline in the rate of breast cancer among Canadian women between the ages of 50 and 69 following a drop in HRT use.
Utilizing data on HRT prescriptions, incidence of breast cancer, mammography and HRT use in 1,200 women between the ages of 50 and 69, considered primary users of HRT, to a 9.6% decline in the incidence of breast cancer between the years 2002 and 2004. Comparatively, rates during the period of time just before the time studied, i.e. 1998 and 2001, had declined by less than 1%. Incidentally, the more than 50% drop in use of HRT during this time period directly followed reports from the Women’s Health Initiative Study showing a increased risk of stroke, heart attack and breast cancer among users of HRT. Moreover, researchers found that the decline in breast cancer cases were not the result of fewer women getting mammograms; in fact, mammography rates remained stable during this time period.
The researchers say that their results, which are the first in Canada to examine the potential link between widespread declines in HRT use and breast cancer among postmenopausal women, support the Society’s goal of providing Canadian women with information about how to reduce their risk of developing breast cancer. Although the study findings may possibly be limited by the fact that the rely on self-reports of use of HRT and do not take into consieration how often and for how long HRT was used, the researchers claim that the results provide meaningful information on factors that influence breast cancer. Now, they need to determine if HRT promotes or causes breast cancer.
When I asked for a statement from lead study investigator Dr. Prithwish De, he said: “The Canadian Cancer Society’s ongoing review of the evidence on HRT and breast cancer since 2003 led us to our current position and the research study findings reaffirm this position. The Society recommends that women avoid taking HRT for any reason other than to relieve severe menopausal symptoms that have not responded to other treatment. We understand that each woman’s experience with menopause is unique. If, after consulting with their healthcare professional, a woman decides to take HRT, it should be the lowest effective dose for the shortest time possible.”
October is breast cancer awareness month. Educate yourselves and those around you.
Wednesday Bubble: News Flash – there’s a new kid in town
[youtube=http://www.youtube.com/watch?v=s6FsnmaJrQQ]
Hey Ladies:
There’s a new kid in town: Menerba®. Although it’s not yet available, the Food & Drug Administration has cleared the way for its manufacturing and production.
Menerba is characterized as an oral botanical drug because its activities are derived from botanical sources, implying that although it is is a pharmaceutical agent, it acts like a plant-based formulation. Nevertheless, Menerba, which is a selective estrogen receptor modulator (or SERM) is apparently a safe alternative to both selective and non-selective SERMS, as well as HRT, for the treatment of hot flashes/vasomotor symptoms associated with menopause. The reason it is considered an alternative is that unlike traditional SERMS, which activate estrogen pathways that have been implicated in breast and uterine cancers, Menerba specifically targets the estrogen pathway in the body that is directly associated with hot flashes. So, theoretically it should be equally if not more effective for addressing hot flashes and also, safer than agents that have come before it.
Thus far, Menerba has been shown in clinical studies to reduce hot flash frequency by as much as 50% and also significantly improve sleep disruptions due to night sweats, with higher doses yielding the best results. Generally, it is well tolerated and has not had any noted impact on uterine or breast tissue. A larger trial of 600 postmenopausal women is slated to begin this year and is currently recruiting.
The bottom line?
Menerba looks pretty promising. I’m not quite sold on the characterization of Menerba as a botanical and would like to see more information on this, especially because its characterization as such could certainly be confusing once clinical trials are completed and the drug reaches the market. Nevertheless, you may want to keep an eye out for this new kid in town.
Read MoreCrowdsourcing menopause
Crowdsource has become the buzzword of the oughts and the interwebz. Defined as leveraging mass collaboration in order to achieve a common goal, it’s not unusual to find businesses crowdsourcing charity efforts, authors crowdsourcing written works and musicians crowdsourcing performance pieces. However, can healthcare be crowdsourced?
I believe it can, as witnessed by the burgeoning epatient movement (aka participatory medicine). In fact, this week, I’m taking a break from my regular schedule to attend ePatient 2010 in hopes of gaining a better understanding how participatory medicine, collaboration between consumers of healthcare and their practitioners and empowered patients will drive the cultural shift that is taking place within our healthcare system.
More importantly, however, is the fact that I believe that as women, being empowered, i.e. educating ourselves, asking hard questions and participating in decisions in our healthcare, is the only way that we can truly take back our transition to midlife and menopause and remove the decisions about managing it from the hands of industry and practitioners who insist on medicalizing it.
So, where does crowdsourcing fit in?
Last week, I wrote a post about Hot Flash Havoc, the documercial that’s about to be screened in Washington DC and other cities this week. In the process of writing about the film, I realized that the director and producer had unwittingly crowdsourced their piece by asking a lot of pro-HRT experts and patients to join forces to promote so-called discrepancies in the Women’s Health Initiative Study and the foibles of the National Institutes of Health. In the case of this particular project, crowdsourcing actually did a disservice to the multitudes of women who remain confused and lack guidance about HRT and its risks and benefits.
Simultaneously, however, screening Hot Flash Havoc for a group of women provided a glimpse into how menopause could be crowdsourced in more positive and empowering ways. In fact, once we moved on to the broader topic of menopause, the post-film discussion focused on our lives, our personal challenges with menopausal symptoms and most importantly, strategies for dealing with them. Not surprisingly, this conversation continued a week later, when a smaller group got together for drinks and dinner and once again, started discussing the film in general and dealing with menopause specifically.
Women are strange creatures. They often share the most intimate of details with strangers but they can be embarrassed to discuss health concerns with their close friends. Two women can find a bond instantly with little forethought or effort and yet, that bond can be a barrier when things get too personal, or as one friend put it, “embarrassing.”
Why do we continue to be embarrassed to discuss menstruation, hot flashes, night sweats, mood swings and headaches or joint pain? Since when did it become taboo to find ways to utilize our common grounds for a larger cause?
So, this is what I’d like to propose:
Let’s start talking…to each other, to our practitioners and to the world. Let’s figure out what we need, research the hell out of it, seek second and third opinions and insist on making decisions with our practitioners rather than going along with decisions without questioning them, especially when they feel wrong. Let’s take back menopause and midlife and the transition and make it an acceptable and natural part of aging. Let’s stop making and treating it as a disease and put an end to self-loathing and stigmatization.
Let’s crowdsource menopause in a positive, proactive way.
You in?
Read MoreStressed out? No wonder you can’t remember…
I have a friend on Twitter who coined the phrase “can’t remember shit.” This phrase greets me throughout the day because I am constantly forgetting even the simplest things. Why did I enter this room? What was I going to look up? How did I get here? Why can’t I focus? And lists? Fuggedaboutit – they don’t do squat; even when I have them, I forget.
I blame my memory and focus problems on hormones all the time. However, if this were true, then the addition of hormones, in particular estrogen, would balance out the forgetting and boost my attention and focus, right?
Hence, I was intrigued when I ran across a small study in Menopause looking at cognition and stress, which seemed to back an earlier contention that stress plays a huge part in recall ability in menopausal women.
In this rather small trial, 22 postmenopausal women (50 to 83 years) took either placebo or an estrogen tablet (1 mg estradiol daily for one month and then 2 mg daily for two months). After three months, they were asked to ingest a substance that depleted certain compounds (called monoamines) that the body manufactures and uses to stabilize mood, perform a mildly stressful test, and then undergo a series of tests on stress levels, mood, anxiety and cognition.
It appears that at least in this small group of women, taken estrogen was actually linked with poorer cognition following a stressful event, including the ability to recall words and slower reaction time. Because this occurred independently of the depletion of mood compounds or negative mood, the researchers say that the effect of estrogen, which has been shown in some studies to improve cognition, is not as straightforward as previously believed. What’s more, the significant increase in stress and stress reactions during menopause may actually interfere with estrogen benefits in so far as memory and recall go.
Our lives are increasingly busier, especially now that we can be connected 24/7. Personally, I can’t even get a work out into my day without some sort of interruption. That’s why it’s so important to figure out how hormones interact with stress, so that we can make informed decisions — not only about menopausal decisions — but also about general life decisions.
Look, memory recall and attention are undoubtedly linked to aging, at least to some extent. But now? Stress may be playing a role in how hormones impact our reactions, focus and attention span, and memory. So the next time you can’t remember shit? Maybe a few deep breaths can help.
No wonder!
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