Over the past week, there have been several stories that I’ve been following that all fit together in an unexpected larger theme. The first was the release of John Jorge’s Music Video, Lovin’. For those who don’t recognized the name yet, I think the first time I was him perform was in the Amity High School’s production of Rent.
I believe this was the day before Thanksgiving, which is the second story to pay some attention. Every year, we stop to give thanks for all that has been given us. As a New Englander who can trace his genealogy back to the early settlers of the Massachusetts Bay Colony, this is an important day for me. Part of what I’m thankful for is the freedoms my ancestors came to this country in search of.
Another big story for me of the past few days is my completion of National Novel Writing Month, or NaNoWriMo. I finished the first 50,000 word draft of my second novel on Saturday. There is something very empowering to set out to create something challenging and complete it. I will see if I will go through the editing and revisions necessary to get it to be presentable for publication, either through traditional channels or through self publication.
Then, there was the story in the Washington Post of a teacher resigning because of what is happening in education.
All of this leads up to World AIDS Day and an incredible article in the New Yorker, What Young Gay Men Don’t Know About Aids. I work at a Federally Qualified Health Center that treats people with AIDS. I am a Health Leadership Fellow of the Connecticut Health Foundation working with others to address health disparities in our state.
AIDS is a very important topic we need to have open and honest discussions about, which leads me to the final story I want to focus on.
An article in the Hartford Courant put it this way.
Student representatives from Trumbull High's theater department were told last Monday that the show they planned to perform next spring covered topics too "sensitive" or "controversial" for a high school.
Originally, I was planning to write an open letter to the Trumbull High School administration, pointing out how not allowing the production of Rent was incredibly short sighted. I would talk about depriving students of opportunities for prepare for their careers, as the Amity production of Rent helped John Jorge on his career. How not allowing the production went against the freedoms that our forefathers came to this country for. How not allowing the production was an affront to all people seeking to improve the lot of mankind through creativity. How not allowing the production would damage the school district by showing a heavy handed administration that doesn’t allow educators to challenge their students. How not allowing the production was an insult to the people of Trumbull by saying that students at Amity and in Greenwich where Rent has been produced are more capable of handling “sensitive” or “controversial” subjects.
But the most important topic to me was the health topic. According to The Connecticut Department of Health there were nearly 700 case of HIV infection reported in Bridgeport, the city next to Trumbull during the years 2002-2011. Yes, the rate of new infections has been going down, but every new infection with HIV is one infection too many.
HIV/AIDS is not too “sensitive” or “controversial”. HIV/AIDS is an infection which we can stop the spread of. We can do this by talking openly and honestly about the infection, about the stigma. If we care about the children in our schools, we need to have these discussions.
I am tempted to wax polemic adopting the voice of preachers I know that would point out that by preventing these discussions, there is blood on our hands. Yet I’m not sure that is effective. It isn’t really my style.
But, this evening, I went to a World AIDS Day event where another section of the quilt was unveiled. It commemorated people in Connecticut how had died as a result of AIDS. It was attended by people who were living successful lives knowing that they were HIV positive. These were people who have confronted the stigma, found out their status and were getting the treatment so that an HIV infection for them was a chronic disease, not a death sentence. These were people who knew their status and because of their knowledge, were not spreading the infection.
I wept with them as we mourned the death of loved ones.
In my heart, I prayed for those who indirectly contribute to the ongoing spread of HIV by thwarting opportunities for discussion. I wished they could have stood with me at the unveiling of this latest section of the quilt and I pray that these words might cause some to stop and think about what their decisions mean for freedom, for education, and most importantly, for health.
Matthew Katz recently posted a link to his article in KevinMD, Google Glass for medicine: 4 reasons why it could be disastrous saying:
Am I just turning into a technophobe? My post on KevinMD about Google Glass.
As a person who has been using Google Glass for the past three months in a health care setting, I believe you have become a technophobe.
Privacy Violations: The same issue applies to cellphones. Are you going to ban them from your practice?
Hackable: Personal computers are hackable as well. Ban them? (I worked with security for a Swiss bank two decades ago when they said they'd never connect to the Internet because of security issues. There are risks with all technology, just like everything else in life. You can't ban life, instead, you need to mediate risks)
Concern with multitasking: This is probably the strongest point, which also seems pretty weak, based on my experience with Google Glass. Yet the interruptions I get from Google Glass, wearing it all the time, is similar to the interruptions I get from phone calls, overhead pages, and other staff members knocking on my door.
Google’s And medicine’s goals aren’t aligned: Again, on the surface, this seems like a valid point. However, from my experience dealing with pharmaceutical companies, medical device manufactures, and insurance companies, I suspect that Google's goals may be more closely aligned with medicine's goals than most companies working in health care.
Over on his article, I added a couple additional thoughts, edited for the blog here:
The other point that I would make is that Google Glass is not in BETA. Ity is not even in ALPHA. It is still a prototype. I think it is premature to make determinations about what a prototype is likely to do to a business. You might want to go back and look at the history of the Xerox.
The Smithsonian Article, Making Copies is a good starting point.
At first, nobody bought Chester Carlson's strange idea. But trillions of documents later, his invention is the biggest thing in printing since Gutenburg
Companies turned down the xerox machine because so few people made copies prior to it, they didn't think it would sell.
My experience with Glass, so far, is similar to my experiences with the Apple Newton in the early 90s. A lot of people didn't think much of the Newton back then, and it never really took off, but it laid the groundwork for smartphones today.
I wouldn't be surprised to see Glass follow a similar path and in twenty years be an all but forgotten precursor to ubiquitous wearable computing.
One last thought: it is worth looking at the Technology Adoption Life Cycle, as written about back in the 50's, particularly by Everett Rogers in his book Diffusion of Innovations.
Google Glass is at the very front end of the adoption lifecycle, where only a few innovators have been using it. As has become more and more common these days, when a new innovation comes along, it often gets a backlash. It seems that the backlash against an innovation is proportional to potential disruption the innovation carries.
As a final comment, I'd encourage you to read a blog post I wrote back in 2007 about Twitter:
In a previous post about ad:tech, I mentioned how I learned about NY Times' Facebook page from a twitter by Steve Rubel. I commented about this in the press room, and one of the reporters was surprised to hear that twitter was still around and active. I reflected back on hearing speakers at OMMA predict the demise of Twitter, Facebook and Second Life and it struck me that the standard technology adoption curve that we all hear so much about, may have a lot of interesting nuances.
Wikipedia describes e-Patients, or Internet-savvy patients as being "empowered, engaged, equipped, enabled" and I run into e-patients from time to time in my work as a social media manager for a Federally Qualified Health Center. Yet all too often, many of our patients are not empowered, and I've often pondered ways to help empower more of our patients.
As the health insurance marketplaces come online in October, many uninsured patients will have the opportunity to buy competitively priced quality health insurance plans. They will do this via the Internet, but will they become empowered, engaged, equipped and enabled? This is one of the many questions out there about the Affordable Care Act.
There are lots of important aspects about the Affordable Care Act that are set up to help empower patients. There are Patient Centered Medical Homes and the Patient Centered Outcomes Research Institute. Will these help do the trick?
I suspect not. I suspect much more will be needed. While there is a lot of talk about getting young men who think they don't need health insurance, the young invincibles, to sign up, there are a lot of efforts by those opposed to President Obama to thwart these signup efforts. Beyond that, there is a lot of work being done to bring in the working poor, people who too often are not empowered in their daily lives.
When I think of e-patients, I tend to think of affluent, well educated white patients who are already empowered in other aspects of their lives who have then faced a medical emergency, often a chronic or terminal disease. Because of this have taken a much more active role in dealing with their health issues.
Will the newly insured take more active roles in their health? Will they learn about their conditions online and communicate with their medical providers via patient-portals? Or, willing they stick their insurance card in their purses and only take them out for emergencies?
I believe that as a nation, we will all be better off if the newly ensured are encouraged to become the next generation of e-patients. I am optimistic when I hear about enrollment efforts that go beyond simply getting someone to sign up for health insurance.
So, can we get the current generation of e-patients to take an active role in helping uninsured people get health insurance, and then become empowered in managing their own health? What can we do to help make this happen?
Below is the address that I gave at the Commencement Ceremony for the 2013 Connecticut Health Leadership Fellow program last month. I've been meaning to post it for a while. It seems particularly apropos as part of the recent discussions about race following the George Zimmerman trial.
Last month, I went to three different commencement ceremonies and heard three different speeches. Connecticut Secretary of State Denise Merrill told the graduates at UConn that people don’t remember commencement speeches. I don’t remember much else that she said. Film maker Joss Whedon told the graduating class at Wesleyan, “You are all going to die” and went on to talk about how we should live our lives. Yet the speech that really stuck with me was by Reverend Liz Walker who spoke about how as the world gets smaller, we are going to realize that people different from us, ‘they’ are really ‘us’.
In many ways, she provided a theme for my thinking about my experiences as a member of the 2013 Fellows class. I've always been ambivalent, at best, about leadership. It has always seemed to me that leaders are too often the people seeking to maintain a system that brings privileges to those leaders and their friends at the expense of everyone else. Yet this program has been about changing systems to bring equity, not maintain privilege. Our class has identified ourselves as agitators, and that’s a label I gladly wear.
I felt a bit uncomfortable about coming into this class for a couple different reasons. Addressing health disparities was not a big concern for me when I started this program. I've always been an equal opportunity agitator, railing against any sort of inequality or injustice… but, as Martin Luther King said, “Of all the forms of inequality, injustice in health care is the most shocking and inhumane”. So, I've greatly appreciated our time working together to address health disparities.
Another thing that made feel a little uncomfortable coming into this program is all the really bright and impressive other members of the class of 2013. Between the MDs, PhD’s, Professors and numerous other titles, I wondered how a college dropout like me would fit in. I felt like an outsider, an interloper.
The Diversity Walk that we did a few months ago helped illustrate that all of us, are at times, the outsiders, the interlopers and at other times, privileged and in power. At various times, we are the ‘us’ and at other times, we are the ‘them’. Instead of ‘us’ trying to be more like ‘them’, or wanting ‘them’ to become more like ‘us’, we need to recognize the value that each person brings, no matter what their educational background, race, gender, sexual preference, or any other labels that we choose to divide between ‘us’ and ‘them’. A sermon I recently heard, put it nicely in terms of seeking unity, not uniformity.
So, as we think about this unity, it is perhaps useful to think about the word ‘fellowship’. We often think of this in terms of an award bestowed by a foundation or university, yet it is important to think about a more common form of the word, “A close association of friends or equals sharing similar interests.”
And perhaps that is the most important part of what this year has been about, establishing long lasting friendships that will carry us forward as we work together to eliminate health disparities.
As many of you know, this past year has been especially challenging for me, and from a time management sense, it might have been much easier if I didn't have all the Fellows activities to juggle along with everything else. But really, it probably would have been much more difficult if I didn't have all of my new friends from the Fellowship supporting me.
So now, the 2013 program comes to an end and we commence our ongoing work together to fight health disparities. To all the fellows, from this year and previous years, let’s stay in touch. I hope you’re all in the LinkedIn group. I hope you all get involved with affinity groups and I look forward to working alongside you.
At the end of the commencement ceremony for the 2013 CT Health Leaders Fellowship, we were all invited to stand and take one step forward, symbolizing the first step of a thousand mile journey. It is a journey of eliminating health disparities. I had spoken earlier about being an equal opportunity activist, and that this journey was but one of many journeys I am on.
All of this came back to me in many ways this past week. Thursday night was the annual Nurse's dinner at the Community Health Center. One of the stories was of a 450 pound diabetic man who had fallen through the cracks of the American health care system. A care-coordination nurse tracked down his story and followed through to help him get bariatric surgery. He has already lost thirty pounds and with therapy, is starting to walk again after having been bedridden for over a year.
Later, we heard a little bit of her story, an immigrant from a war torn country, who struggled with diabetes and depression through school, but eventually became a nurse at CHC. The patient is on his journey of recovery, aided by a nurse who has taken difficult first steps in her journey to this country and her journey to becoming a nurse.
The story stayed in my mind Friday morning as I went to the funeral of a former classmate and co-worker of my wife. Emily was taken from us way to early, by complications from diabetes.
This week also saw important other steps in our life together as a country. The Supreme Court dismantled key parts of the Voting Rights Act, but it took away some restrictions on gay marriage. I watched the wedding ceremony streaming across the Internet where plaintiffs in the challenge to Prop 8, Kris Perry and Sandy Stier were married.
I read stories about Paula Dean and Rachel Jeantel and I thought about how much work still needs to be done before all people truly are treated equally in all states, no matter what their race or sexual orientation is.
I imagine that the 450 pound patient celebrated the first steps in his recovery as he sat back down and rested after the strain of those steps. Tonight, I go to bed emotionally weary, celebrating first steps, lamenting steps backwards, and mourning the death of a friend.