Maggie Savage

Don’t think we let all the African-based Fellows have all the fun at their mid-year retreat! The six American-based Fellows and four member GHC team got together a couple weekends ago in Boston for a great mid-year retreat. We actually got to leave behind the blizzard in New Jersey and New York and head up to Boston where it was actually just raining and a bit warmer (who knew?). It was great to hang out with the GHC team and especially our two Boston Fellows, Diego and Francesca. We took a historic walking tour of Boston led by none other than Ed Cardoza, our resident Bostonian and host for the weekend at Still Harbor. The weekend was a great opportunity to reflect on the last 7 months and re-energize ourselves for the next five.

My favorite part of the weekend was when we spent some time presenting our current work and successes and challenges with one another. The synergy among the work that each fellowship team performs was very apparent. Even though we are working in three different organizations, all of us are working to help people understand their health and access the complex healthcare system. If the six of us made up one organization we would have most of the pieces needed to create an awesome project to increase health literacy among a population. Richard and I would evaluate what interventions might be best for the population, Diego would be able to use the logic framework he has created to develop indicators to monitor and evaluate the project, Francesca would guide the development of the curriculum to be used, and Bertha and Ketline would provide the direct service and teaching with the clients. Overall, it was encouraging to see how we are each making up a different piece of the puzzle to ensure that vulnerable populations receive the skills needed to navigate the complex healthcare environment.

So what do Gen Y’ers or millennials or whatever they are calling us these days think about health care reform? Well according to some new research by the Pew Center, we are a pretty apathetic bunch. But I can’t say I was too surprised when I saw this in a Newsweek blog because since the 2008 Presidential election, our generation has been on a downward swing in political engagement. I understand that it is a mighty feat to generalize an entire generation, because there are those of us out there that are passionate about this and want to see real change—we wouldn’t be part of Global Health Corps otherwise—but I find engaging many of my peers on conversations surrounding health care reform to be very difficult. Either they don’t think it will really affect them (wrong), they just aren’t informed (sad) or they are generally fed up with Washington’s politics (most).

Maybe we are more apathetic because we have come of age in the hyper-polarized decade of Congress where we have not had the luxury of seeing many bi-partisan reforms pass. And to me, health care reform has become the poster child for millennials’ current apathy. Youth voter turnout for the 2008 Presidential election was one of the largest ever, yet for the Massachusetts Senate race youth turnout was the lowest of any age bracket. Only 15% of eligible voters under the age of 30 heading to the polls, compared to upwards of 57% for other age brackets. The election in Massachusetts characterized the apathy of millennials, and put a halt to the health care reform’s momentum.

Have we written off health care reform as falling victim to the back-door deals and compromises? Or is it because numbers and cost projections just do not resonate with us?

Congress has made health care reform about economics, not people and thus we have lost the ethical argument for reform—that everybody should have access to medical care when needed.

I think Kliff is correct when she writes: “…the more attractive part of health insurance for millennials, these poll numbers indicate, is the moral underpinnings of the bill: that all Americans ought to have access to insurance, that this is our responsibility as a nation. While 47 percent of millennials generally support health-care reform, 70 percent support the idea that all Americans should have access to affordable health insurance, the highest number for any demographic. Maybe we’re just young and idealistic, maybe we have genuinely different viewpoints than our parents; either way, that provision really strikes a chord with younger Americans. But the bill has not been sold that way—if it had, perhaps more millennials would strongly support health-care reform instead of the kind of, sort of, support we see now.”

Obama ran on a feel good platform of hope and change. And while that got the attention of my generation, when Congress began the cold, hard logistics of what reform would look like, we tuned out. Call me an idealist but when Obama meets with Congressional leaders in a televised event on Feb 25, maybe, just maybe. its time to couch health care reform not just in terms of cost or number insured, but in the moral language that had so many of us excited for health reform before party politics took a hold. And then maybe we will begin to see some of my generation’s apathy fade away.

Things are moving along here in Newark. Just wanted to share a quick link with you all so that you can get a feel for the work that we are doing. January has been a very busy month and among other things, Richard and I have been working with some of the IT team in the library to create a Health Literacy Dashboard that will be accessible online and be a quick link as part of the clinical desktop on all computers in the hospital. This way providers will have information at their fingertips. It is still in development and will soon be populated with more information. This will include maps of the hospital, communication techniques for providers, and health information that is appropriate for those with limited health literacy.

We would love to hear your feedback so that we can improve on this basic dashboard.

Here is the link: http://mediacenter.umdnj.edu/LiteracyDB/index.html

It has been a while since I posted last on Richard’s and my experience here in Newark and while I am hesitant to post any specific stories of patients in an effort to comply with HIPAA regulations, know that I have seen both doctors and patients at their best and worst here and I wish I could relate some of those stories. They would clearly illustrate to you while improving the health literacy environment of this hospital is important.

Our six weeks of observation have finally come to an end and to be honest I could not be happier about it. It is so hard to stand by and do nothing. I watched while patients struggled to understand what their doctor was telling them or as frustrations with wait times rose. I stood by while patients did not ask the necessary questions about a new medication or their discharge orders. I silently applauded when doctors or nurses took the time to go through every medication a patient was on and why. While I know those six weeks going from floor to floor, department to department were necessary for Richard and I to understand the hospital and the relevant health literacy environment that has been created, I no longer have to be a fly on the wall. Moving out of the observation phase means that Richard and I can now hit the ground running. Taking what we have observed, we will be able to match up what we think should happen with evidence based recommendations that come from our experience and the scientific literature that is out there. The hope is to present those recommendations to different members of the hospital administration and have them tell us based on the report how our final 9 months at UMDNJ can best be spent to improve the health literacy environment. At this point we are not sure what our role will become after we finish our final report as we could serve as implementers of programs and initiatives or serve in a supportive role to departments that want to make substantive changes in the how they communicate with patients, or a hybrid of both. Either way it is exciting to know that we are on the road toward helping the hospital help their patients understand the care they are receiving.

That gives you a little background on what Richard and I are up to, but I promised in my first post that I would give you some of the background on why health literacy is important. Health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Health People 2010). How many times have you visited a doctor’s office or hospital and had a consent thrown in your face and told to sign without regard to what it says or how frequently have you looked at a form and had no idea how to fill it out? How often do you feel like the doctor is speaking to you as though you are a peer in his medical school class? And lastly, how often are you given a prescription for a new medication, but are not quite sure what it is for? Those are the types of problems that people run into every day as the try and navigate the complex health system that has developed in the United States. Whether or not you believe access to healthcare is a right, it is hard to deny that access to the system is a social justice issue and our healthcare systems should be working hard to ensure that all patients are able to access and understand care.  That access begins with having adequate literacy skills. According to a report by the Institute of Medicine, over 90 million Americans have difficulty using and understanding health information. That means 90 million people have trouble locating and accessing services, understanding health insurance plans and eligibility requirements, filling out forms, understanding the informed consent process, following medication instructions, managing chronic diseases, and the list could go on and on. Every where a patient turns they are confronted with reading materials, medical jargon, and other communication that makes understanding their health care difficult. The statistics to support the need for patient understanding are out there. Lower health literacy is associated with poorer health outcomes, which in turn translate into higher health cost. Here are just a few of those statistics:
•    Patients with limited health literacy are less likely to access preventative services such as flu shots, mammograms, and pap smears. (Scott, et al. Medical Care, 2002)
•    Numerous studies have shown that patients with limited health literacy have less knowledge about how to manage their chronic diseases such as asthma, high blood pressure, HIV, or diabetes than those with functional literacy skills.
•    Patients with inadequate health literacy are twice as likely to have been hospitalized in a year period than those with adequate literacy skills. (Baker, et al. J Gen Internal Med, 1998)
•    Spending for a patient with low health literacy skills was $993 higher than that of a patient with adequate reading skills. (Baker et al. Am J Public Health, 2002)
•    It was estimated that inadequate health literacy was responsible for an additional $32 billion to $58 billion dollars in healthcare spending in 2001. (Friedland, Working Paper, 2002)

I hope those statistics just give you an idea of why this is an important issue and one I am excited about working on for the next year in a hospital where the population served is at a high risk for having low health literacy skills.

Having only ever flown to the northeast, the over $20 of tolls to get to Newark was the first signal that I was not in Carolina anymore. Then needing gas following a harrowing trip up the New Jersey Turnpike, the fact that I was not allowed to pump my gas was signal number two. The ease at which New Jerseyans lay on the horn was signal number three. As I drove through the Brick city, as Newark, NJ is known, the signals that I was no longer in my beloved North Carolina surrounded by towering pines began to pile up as I surveyed my new home.  From the vast number of city buses to banners declaring the city’s support of the New Jersey Devils. From the street vendors selling everything from “brand-name” purses to hot dogs to every other knickknack you may need up and down the aptly named Market Street to the lack of open green spaces (I went for a run on the top of our parking deck the other day), I knew as I arrived at my new home at the University of Medicine and Dentistry of New Jersey (UMDNJ) that I was going to have a bit of adjusting to do. I forewarned my fellow partner, Richard, while I am not as far out of my comfort zone as he probably is, that I would not be the best liaison for how life functions in the north, but that I would try to do my best to introduce him to America.  I feel as though I have to adjust to a new way of life here in Newark in much the same way as my fellow fellows who are now in Rwanda, Tanzania, and Malawi. For a while I thought I would have an easier time adjusting to life in New Jersey than the other fellows who headed across the Atlantic, but I have found that we all tend to have some of the same worries, frustrations and excitements about being in our new locations.  It is going to take some time to come to understand and know what it means to live in such an urban environment, but I will definitely keep you all posted on how I am doing up here away from the comforts of North Carolina. And by the way I have already tackled the public buses and trains to venture into New York City  (which is amazing to have only 20-40 min away depending on the time of day).

So that was a small glimpse into what my first week getting to know Newark was all about. I was here for almost a week before being joined by my partner fellow, Richard, and beginning work as a Health Literacy Consultant at UMDNJ. You might be wondering,  “what in the world is a Health Literacy Consultant?” I was wondering the same thing before beginning work here in Newark. And we are still in the process of defining our role but this is what I have so far. First, we are based in the medical school library, which makes sense for the literacy part, but spend most of our time over at the hospital, which makes sense for the health part of it. In short, Richard and I are spending time assessing the health literacy environment of University Hospital to ensure how well patients can access and understand the care they are receiving. We observe communication with patients, signage, registration, and patient understanding of medications and doctor’s instructions. After the observation phase we will be determining ways in which our findings can translate into new projects to improve the health literacy environment of the hospital. In the near future I will post some background information on how closely linked literacy and health are.