Last year, as a member of the Connecticut Health Foundation’s Health Leadership Fellows Program the group I was part of mapped out plans for bring Health Impact Assessments into Connecticut policy decisions, especially the state legislative process.
A key component of this plan was to improve the way health advocates work together during the legislative session. We set up a Google Group, CT Health Equity Bills to discuss this. As we enter another legislative session, members are encouraged to discuss upcoming bills and opportunities to testify.
I must admit, prior to becoming a CT Health Foundation fellow, I would often be asked to support various bills, and I rarely thought about these bills in terms of the impact they would have on health equity, and I suspect that many legislators don’t think about bills in terms of health equity the way I believe they should.
The Connecticut Health Foundation has published a blog post, Things We’ll Be Looking Out For During the 2014 Legislative Session. While it doesn’t address specific bills, it provides an important framework for this year’s session. I have been speaking with other organizations and hope to share thoughts about their agendas as well.
Meanwhile, I’m already getting messages from activists to support different bills. One of the first bills I received a message about was S.B. No. 23 AN ACT CONCERNING BENEFIT CORPORATIONS AND ENCOURAGING SOCIAL ENTERPRISE.. Friends have pointed me to a Change.org petition uring the senate to take up SB 23 this year.
it is early in the session and I don’t know what SB 23 is going to look like by the end of the session, but I strongly support the goal. Yet I hadn’t been thinking of this bill in terms of health equity. My gut feeling is that it won’t harm efforts for health equity and has the potential to benefit health equity efforts, but beyond that, I haven’t really thought it out much.
Then, at dinner last night, I got into a fascinating discussion with a friend from Yale’s Global Health Initiative. She was at a conference where people were talking about using a social impact exchange as a means of encouraging social entrepreneurship and investment in Haiti to deal with the issues of cholera.
While I do expect the passage of SB 23 to lead quickly to the issue of Social Impact Bonds, or the establishing of a social impact exchange, and a resulting improvement in efforts to address health equity in the state, it does seem like a step in the right direction.
Another bill I was contacted about was S.B. No. 120 AN ACT CONCERNING DYSLEXIA AND SPECIAL EDUCATION.. “To include dyslexia detection, recognition and intervention education as part of the professional development program for teachers and to amend the state IEP form to include dyslexia.”
With sponsors ranging from Sen. Bye to Rep. Cafero, this seems like a pretty straight forward broadly supported bill. Yet even with a bill like this, it is important to think about how it relates to health equity. Are there disparities in the diagnosis and treatment of dyslexia in Connecticut? How are they tracked? How will they be tracked and corrected?
A final bill for this blog post: H.B. No. 5144 AN ACT CONCERNING ACCESS TO BIRTH CERTIFICATES AND PARENTAL HEALTH INFORMATION FOR ADOPTED PERSONS., “To provide adult adopted persons, twenty-one years of age or older, access to their biological parents' health information and information in the person's original birth certificate or record.”
A friend contacted me about this bill. She was adopted as a child and does not have access to information about her biological parents. While it is easy to think of this in terms idle curiosity that an adopted child might have about their history, there are important health issues to consider. Are there biological family history information that could help the adopted child better deal with their own health? Again, I don’t know much about the health equity aspects of this. Are there disparities in access to birth and health information by adopted children along racial or ethnic lines? Would this bill help address such disparities?
Over the coming days, I expect I will hear more about these and other bills. I hope you’ll join me in thinking about the impact these bills would have on health equity in our state.
A few weeks ago,Vermont Governor Peter Shumlin dedicated his State of the State address to addiction.
In every corner of our state, heroin and opiate drug addiction threatens us. It threatens the safety that has always blessed our state. It is a crisis bubbling just beneath the surface that may be invisible to many, but is already highly visible to law enforcement, medical personnel, social service and addiction treatment providers, and too many Vermont families. It requires all of us to take action before the quality of life that we cherish so much is compromised.
At work we talk about treating people struggling with addiction. We have some great programs to help and part of my job is to spread the word about these programs.
The nature of the addiction problem came to light recently in a communications meeting. We were tracking various news stories and saw one about Philip Seymour Hoffman. One of the guests cited some report which claimed that two out of three Americans are affected by addictions amongst their friends or family. I looked around the room. Everyone is the room had someone close to them that was struggling with addiction. That two in three number may be a bit low.
Today, a friend shared the article, Russell Brand: my life without drugs. Please, go out and read it.
At CHC, we provide telemedicine services to help providers around the country provide better services for those struggling with addiction. Project ECHO - Buprenorphine helps primary care providers treat patients struggling with opioid addiction. It brings together experts in several fields to provide both experiential and didactic education in treating addiction.
Our outreach teams work on a related issue, health stigmas. How do we reduce the stigmas around various health conditions, like suffering from addiction or being HIV positive? How do we make it easier for people to get the treatment they need?
We celebrate when our friends are in remission from cancer, knowing in the back of our minds that it could come back at any moment. Why don’t we have similar celebrations for friends in recovery from addiction? Yes, there may be some celebrations at a narcotics anonymous meeting or something like that, but we are a long way from standing with people fighting health problems the way we should.
Rabbit, Rabbit, Rabbit. I”m glad January is over. Let’s hope February will be better. I’ve been incredibly busy with issues at work and have had little time for writing or exploring new ideas. I did get a chance to visit my daughter Miranda up in Boston last week, and as we talked about my work in health care and hers in arts education, a phrase came to my mind, The Creativity Contagion.
One of the really important movements in health care right now is the empowered patient, or ePatient. Often this empowerment is tied to being online; finding information about diseases and connecting with others to address the disease. It seems to work well for privileged patients, who have gone to college, had good careers and made enough money to be comfortable, but what about other patients, those struggling to get by day to day, those who are not empowered in their daily lives. How do we empower these patients?
My ideas started crystallizing around a 3D printer we got at work. There is something empowering about having an idea, learning how to take the idea and make something of it, and, in the case of a 3D printer, see the idea actually take shape as an object in front of you.
Creativity may be the key to empowerment that I’ve been looking for. Too much health care is defensive. We get our shots and change our diets to avoid getting sick. When we do get sick, we go to the doctor’s office to get better. Wellness gets bandied about but not pursued as much as it should be, especially when we are dealing with chronically ill patients.
We try to avoid getting sick. What we should really be doing is trying to become creative, with all the hope and empowerment that comes with it.
Perhaps that captures what I hope to do with a 3D printer at a health center, Promote Empowered Wellness Through Spreading the Contagion of Creativity.
Yesterday, I attended a presentation on the use of tablets in health screenings. It is a project CHC has been involved with together with UConn and another health care organization and it is funded in part by the Connecticut Health Foundation.
One of the comments that particularly jumped out at me was about research that questions the effectiveness of many earlier screening programs. The problem is that these screenings often took upward of an hour and were not necessarily all that accurate.
By using tablets with targeted screenings that the patient could do, typically in four to seven minutes on a tablet while waiting for an appointment, the researchers found much greater accuracy and patient satisfaction with the screenings.
Earlier in the day, I had read an article in the New Yorker, THE DEFIANT PARENTS: TESTING’S DISCONTENTS. It was a fascinating article.
The article is full of great quotes, “One teacher remarked that, if a tester needs three days to tell if a child can read ‘you are either incompetent or cruel…’” Applying it to health care, any practice that took frustrating grueling days to administer basic tests would quickly find themselves out of business.
Part of the Affordable Care Act was the creation of the Patient-Centered Outcomes Research Institute. Perhaps, as part of education reform, we need to look at student centered outcomes research. How effective are the existing batteries of standardized tests? Are there better testing methodologies? Are the components of the core curriculum really the components that will result in the best life outcomes for the students? How does the core curriculum relate to twenty first century skills? Is the focus on the core curriculum diminishing the focus on other key 21st century skills, like creativity and collaboration?
This ties back to one of the lines in the New Yorker article,
Allanbrook says that her decision to speak out was motivated in part by thinking about the fifth-grade social-justice curriculum at the school, in which children who are about to graduate are asked to consider the question “What are we willing to stand up for?”
That especially jumped out at me. Does the school your children go to have a social justice curriculum? It seems like such a curriculum may a great example of what needs to be taught to reach twenty first century skills, and getting skipped because of excessive focus on the core curriculum.
To return to the topic of testing, the article talks about a testing process which takes “seventy minutes a day for six days” and contrasting it with “alternative tests produced by the Department of Education, one in English language arts and one in math, each lasting just forty-five minutes”.
There is another of aspect of health care that jumps out at me which I’ll introduce by way of the infamous quote from the Harvard Educated son of a University of Chicago Secretary of Education, Arne Duncan, who
described critics of the Common Core as “white suburban moms who—all of a sudden—[find] their child isn’t as brilliant as they thought they were, and their school isn’t quite as good as they thought they were.”
Yes, I am white and suburban, though I’m a father, not a mother, and I have not found any of my three daughters any less brilliant than I thought they were. The older two both skipped high school to start college at fourteen. The eldest is teaching English in Japan and the middle daughter completed her Masters in Education at age 19 and has already published three books, her most recent pointing out issues with an education system that does not sufficiently promote creativity. The youngest who is attending a great public elementary school consistently is a top scorer on standardized tests.
Besides relying on false stereotypes, the biggest problem I have with Sec. Duncan’s quote is that it reflects a different issue with the core curriculum.
In health care, we have the National Culturally and Linguistically Appropriate Services.
Provide effective, equitable, understandable and respectful quality care and services that are responsive to diverse cultural health beliefs and practices, preferred languages, health literacy and other communication needs.
One of the criticisms of standardized testing is that many such tests have been culturally biased. Is enough being done to address cultural biases with the core curriculum? Do these cultural biases also end up in the classroom as teachers “teach to the test”? Concerns about the cultural aspects of education are just one part of the larger concern about the ‘one size fits all’ aspect of the core curriculum. Should the requirements vary depending on a students learning style? Does it really matter at what age geometry is learned and at what age algebra is learned, or does what really matter is that adequate progress is made towards learning all the aspects of the core curriculum by high school graduation?
Perhaps Ken Robinson’s comment about ‘date of manufacture’ addresses this issue best
We still educate children by batches. You know, we put them through the system by age group. Why do we do that? You know, why is there this assumption that the most important thing kids have in common is how old they are. You know, it's like the most important thing about them is their date of manufacture.
Well I know kids who are much better than other kids at the same age in different disciplines. You know, or at different times of the day, or better in smaller groups than in large groups or sometimes they want to be on their own.
If you are interested in the model of learning you don't start from this production line mentality. This is essentially about conformity. Increasingly it's about that as you look at the growth of standardised testing and standardised curricula. and it's about standardisation. I believe we've got go in the exact opposite direction. That's what I mean about changing the paradigm.
As a final note, plenty of people have criticized the Affordable Care Act. It doesn’t do enough to reform health care and perhaps some of the reforms are headed in the wrong direction. We do need to improve the Affordable Care Act while recognizing benefits that it brings.
It seems as if the same applies to education reform. We do need a core curriculum, one that really addresses the twenty first century skills our students will need. We need proper testing and scientific research into how well these skills are being taught, the impact they are having, and even on the impact of testing, and we need to introduce ideas like the CLAS standards to education and move away from a one size fits all approach to testing and education.
Back to the starting point of this blog post, research at CHC has found that by coming up with new approaches to health screening, effectiveness and satisfaction can be improved. We need to look at similar ways to do this for education, perhaps individualizing and gamifying the whole process.
So, I asked my twelve year old daughter, “What if we replaced standardized tests with computer games?”
Her response was, “That would be awesome!” and then we went on to discuss how people could use it, track student and school performance and play the games from home.
A week and a half ago, Emma Keller wrote a column for the Guardian entitled, “Forget funeral selfies. What are the ethics of tweeting a terminal illness?” I have not read it. The Guardian took it down before I found out about it. It asks a very important question, which many others are writing about, much better than I can, but I hope to shed a little more light on the subject.
I first came across the column on Howard Rheingold’s Facebook wall where he talked about his experiences blogging about cancer four years ago, and pointing to an article in Gawker, Dear Bill Keller: I Have Cancer. Is That OK?
The author, Robert Kessler is undergoing treatment for non-Hodgkin's lymphoma and writing about it at Cancer? I Hardly Know Her!. He takes on Emma Keller, and her husband Bill who seem to take offense to people writing about cancer.
Another article posts part of Emma’s column, which is full of important questions. As the only part I have access to, I’ll stay away from attacking Emma, and instead, take these questions at face value.
Should there be boundaries in this kind of experience?
Yes! The patient should chose the boundaries that they are most comfortable with. Several friends have written beautiful cancer blogs and I have grown greatly from reading them. Others have chosen to remain silent about their cancer.
Is there such a thing as TMI?
Yes! This is a judgment call by the reader. What is too much information for one reader is fine for another. If you find you are reading something that goes into too much detail, whether it be a cancer blog or a steamy romance, the wisest thing may simply be to put it down and read something else. As I get older, I find I’m much more choosy about what media I consume. I wish more people were. For me, scripted reality shows are too much false information. Cancer blogs are much more real and valuable.
Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?
I’m not sure I would call them the ‘grim equivalent’, but they are related. My first thought is that in cancer blogging, there remains hope. Perhaps the treatment will be successful. Perhaps the patient will go into remission. Yet as I think more about it, even here there is equivalency. Even the deathbed selfie can contain hope, hope for something greater where there is no more crying or pain and God will wipe away every tear.
Dylan Thomas called us to ‘Go not gentle into that good night’ Cancer blogging and cancer tweeting, to me, are part of a grand tradition from deathbed and funeral selfies to Dylan Thomas’ poetry to so much great writing about all the struggles of life.
Why am I so obsessed?
I can’t say. I love reading great literature. It isn’t an obsession for me. I have the same reaction to people writing about all their life struggles. If Emma’s obsession is causing her problems, I would encourage her to speak with a therapist.
For the rest of us, let’s work together to have a healthier relationship to people’s health. Let’s find constructive ways to address health stigmas, whether it be cancer, mental health, HIV, or many others.