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Community Engaged Research: A Potent Strategy for Promoting Health Public Policy

I attended a lecture recently by Meredith Minkler, a professor at UC Berkeley’s School of Public Health. This event was sponsored by Northwestern University’s Alliance for Research in Chicagoland Communities (ARCC) and the Community Engaged Research Center. Professor Minkler spoke of her experience in community engaged research and its affects on promoting healthy public policy. Community Based Participatory Research (CBPR), her specialty, encompasses several principles, one being asset based community development (ABCD). This principle involves building on pre-existing strengths and assets of a community. Other principles include co-learning between partners to begin the power sharing process, creating a balance between research and action and a commitment to sustainability. With her background in policy, Professor Minkler also took us through the stages of the policy process. The first step she explained is defining the problem, second is setting the agenda, third is constructing policy alternatives, fourth is deciding on the policy to pursue, fifth is implementing the policy and fifth is evaluation. By creating policy hand in hand with CBPR principles, you not only empower the community with co-learning and creating opportunities for partners to learn skills in leadership, strategic planning, management and negotiation but also create sustainable change in the community.

This concept is demonstrated in the example Meredith Minkler gives on the food desert in San Francisco’s  Bayview/Hunter’s Point neighborhood. Professor Minkler and her policy team defined the problem as the lack of access to healthy food for the residents of the Bayview/Hunter’s Point. Nearly 25% of the residents ate fast food daily and in order to get to the closest supermarket, residents had to take 3 buses.  However, they noted there were neighborhood stores already in existence but their shelves were mostly stocked with tobacco and alcohol. This is an example of asset based community development. When constructing policy alternatives, Minkler and her team reviewed municipal ordinances but decided on creating the Good Neighbor Program. This policy program gave local stores store branding, free marketing, city recognition, discounts on energy efficient appliances if they agreed to devote 10%+ of shelf space to healthy foods and to reduce outdoor tobacco advertisements. By giving them the tools to succeed, the Bayview/Hunter’s point neighborhood had tremendous success. All Good Neighborhood Program stores had an increase in produce sales, decrease in tobacco and alcohol and an increase in overall profits.

With capacity focused partnering, policy makers will see the community as possessing assets on which to build resources and as a result, a high level of mutual respect and trust in the community will be gained. Minkler interpreted Community Based Participatory Research as a kind of street science necessary for policy making. She ended her presentation with a quote from colleague, Jason Corburn,. “When CBPR identifies hazards, highlights previously ignored questions, provides hard to gather data, involves difficult to reach populations, and expands the possibilities for intervention alternatives and success, science and democracy are improved.”

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Research Update from Global Health Student Sarah Cohick on the Ugandan Hydrocephalus Project

Sarah Cohick with a patient from a pediatric neurosurgery hospital in Mbale, Uganda

By Student Guest Blogger:
Sarah Cohick

Biomedical Engineering
McCormick School of Engineering and Applied Science 2012

Research Topic: Ugandan Hydrocephalus Project

Research Location: Mbale, Uganda

Research Update: I am in Mbale, Uganda with a fellow Northwestern student, Emily Laning, working at a pediatric neurosurgery hospital. Most of the patients are infants with hydrocephalus or spina bifida. The hospital sees about 900 of these cases a year. While spina bifida is a condition children are born with, the majority of the hydrocephalus cases are post-infectious, meaning they acquire the disease after birth from an infection, typically meningitis. After a recent research project’s results were analyzed, it was found that 50% of the patients who leave the hospital healthy after a successful surgery end up expiring or being in life-threatening states because of ignorance and neglect by the parents. Our project involves developing a post-operative education program for the parents so that they understand their role in the necessary care for the child; this ranges from preventing pressure sores from accumulating on the paraplegic child to simply knowing the symptoms that indicate the child should go back to the hospital.  Much neglect stems from the stigmas that the culture has put on these conditions, so the education also heavily emphasizes the value of the children and the incredibly bright futures they have. Many villages and communities will say that if the parents take the child to this hospital, CURE Children’s Hospital, they are wasting their money as the child is not a value to society or even a curse.

After collecting data from past patient files and current patients in the ward at the hospital, Emily and I have created an assessment to determine the level of knowledge the parents have about the condition of their child, the necessary care to be given at home, and how they will respond to any negativity that may come from their families and communities with regards to their child. The results from this assessment show the social workers and nurses of the hospital where the parents may need more education. Next week we will begin administering the assessment and collecting data to edit the form. In this process, we are also trying to edit a form created by a Yale medical student who was here a few months ago. His form evaluates quality of life of returning patients, specifically those treated for hydrocephalus. These results combined with those of the assessment will help us start an outline for an education program the hospital will start for the parents. Patients are here an average of 6-10 days and the program will be a cycle of educational lectures or activities that will prepare the parents for discharge and being successful when they go home.

As we went through the patient files to acquire information about past patients from the ten years this hospital has been running, we found that the hard copy, non-electronic system is extremely unorganized and difficult to navigate. Emily and I have looked through the forms that the different departments give to the patients and have eliminated redundant questions, added key, unasked questions, and created a plan to consolidate the forms in one central file instead of each department having their own file for the patient. We have a meeting set up for next week with the heads of each department to present our plan and hear what we should keep about the plan and what needs to be adjusted. A computerized system is something that the CUREInternational headquarters in the U.S. would love to start, but the current infrastructure will not support an immediate shift in that direction. However, Emily and I have been asked to make some sort of outlined plan of what would need to happen to make that shift and what the projected time frame would look like. Either way, having a more organized filing system will make the switch much smoother.

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Public Health and the Linguistic Barrier for the Spanish-Speaking Population in the United States

By Student Guest Blogger:
David Leander
Class of 2010, Weinberg College of Arts & Sciences
Materials Science, Economics, and Spanish; Global Health Studies and Classical Studies

During my 45-minute drive from Evanston to the Plaza Family Medical Clinic in Pilsen, I became aware of the change of scenery that materialized seamlessly–realizing the familiar microcosm that morphed within a few blocks.  The Chicagoland streets transformed into the calles I remembered from my study abroad experience in Mexico City.  Street vendors, Latino supermercados, and of course, the language lined the streets.  In the clinic, I waited in the hallway to the examination rooms before approaching a patient–in hand with a 15-page survey, subject compensation, IRB forms.  As an unfamiliar face to subjects both as a member of the clinic and as a native Spanish-speaker, my entrance to the examination room was a strange intrusion on both fronts.  Initially awkward, I explained my research project to the patients.  I gained their trust and our conversation about pharmacies and the language barrier began.

The Latino population is predicted to become the largest minority group in the United States.  As a consequence, in terms of a public health perspective, the problem of language concordance presents itself as a serious concern.  In particular, several studies document that pharmacies in the United States lack the capability to provide Spanish-speakers with translated materials.  Related, medication errors represent significant costs that affect the healthcare industry–many of which occur in outpatient situations.  Thus, it is imperative that pharmacies focus on providing customers language appropriate materials.

My study, in conjunction with the Feinberg School of Medicine’s Health Literacy and Learning Program, investigated this issue from the perspective of the customers themselves.  I was linked with ACCESS Community Network, which is a large community healthcare provider in Chicago–specifically, I recruited subjects at the Plaza Medical Center on Cermak in Chicago’s Pilsen community.  While patients waited to see their primary healthcare provider, I would survey them regarding their behavior with prescription medicines when the language barrier is present.  All subjects were 18-70 years old, taking at least 1 prescription medicine, and a Spanish-speaker.  I conducted all surveys (15-20 minutes with 33 questions) exclusively in Spanish.  Overall, I spoke with 35 subjects.

The principal results of my study concurred with previous studies that indicated that pharmacies lacked translation capabilities.  48% of subjects did not receive full translation services (information pamphlet, prescription label, and advice from pharmacist) and 20% did not receive any translation services.  Moreover, I found a discord between patient needs and preferences.  As rationally economic consumers, subjects reported that price (and proxies of price such as location and convenience) dominated their decision in choosing  a pharmacy.  On the other hand, in terms of patient needs, subjects reported that they thought that pharmacies could improve services by offering bilingual services.  Thus, this difference represents a challenge for pharmacies and their customers.  Furthermore, delving into subjects’ behavior, I found that a significant percentage (43%) used translators (children, spouses, or non-pharmacy employees).  None of these translators however are suitable for providing safe and efficient delivery of pharmaceutical medicines.  As well, of those subjects that received translations, it was reported that these translations may not be fully digestable for patient use.  Demographically, the subjects I surveyed had a range of years of education of 0 to 18 years, with a median of 7 years.  Therefore, another issue involved is that of providing comprehensible, target-appropriate materials to deliver safe information.

David Leander at Undergraduate Symposium

I presented this information at the 2010 Undergraduate Research Symposium.  In terms of how this has affected my future career, I just started full-time work at Epic two weeks ago.  Epic is a healthcare software company in Verona, WI and I hope to help find ways to diminish the language barrier in healthcare delivery.  Beyond this scope, I am interested in a future in the medical and/or healthcare field.  This experience gave me the once in a lifetime opportunity to develop, execute, and analyze my own research topic as an undergraduate in the public health sphere.  This project would not have been possible without the support of the Mabie family, to whom I am deeply thankful–their generous support provided me everything I needed to carry out this project.  As well, I would like to thank the ACCESS staff who assisted me in this project.  Lastly, I would like to thank the amazing faculty that guided me through this experience: Stacy Bailey, director of the Health Literacy and Learning Program, aided me in developing a survey battery and connecting with the ACCESS clinic; Professor Beth Barden was essential to helping me develop my research proposal and application; and Profesora Elisa Baena served as my advisor for my Spanish 399 Independent Study, which I took as a capstone project for my senior year as a Spanish major.

A particularly memorable experience that I had outside of the research perspective was when I saw one woman who I interviewed a month later in the waiting room.  She asked me how my project was going and she actually told the people around her in the room about my study.  Incredulously, they looked at me, a South Korean native, and wondered who would ask them questions.  ”Él” (him), she would say, pointing at me, to which I would respond: “Si, hablo español.  ¿Ud. puede hablar conmigo mientras está esperando para el doctor?”  (Yes, I speak Spanish.  Would you be able to speak with me while you wait for the doctor?).  Because of this action, a referral of sorts, I was socially validated and was extremely successful that day recruiting patients.  This experience was not only important training as a research experience, but also in understanding the social aspect of healthcare.  With language especially, trust and competency are essential.

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Bringing the Lab to the Village: An Update from Northwestern’s Global Health Initiative (GHI)

As part of NU@AHEAD’s Professional Development Brown Bag series on Thursday, July 1st, Kara Palamountain, Executive Director of the Global Health Initiative (GHI) at the Kellogg School of Management, gave an update on the progress the GHI group has made since it received a $4.9 million grant from the Bill & Melinda Gates foundation in 2006. GHI’s uses an interdisciplinary approach (GHI’s work spreads across various NU schools, including Kellogg, McCormick and Feinberg) to develop and distribute affordable diagnostic devices for infectious diseases to be used in low-resource countries all over the world. GHI initially receives proprietary intellectual properties donated from partner companies, such as Abbott or Invernes, while NU students and faculty then develop that IP into a usable product, test it, and in the end hope to return it to these companies for them to bring the product back to the market.

One of GHI’s products, a handheld portable Early Infant HIV Diagnosis Test (EID), has been developed by NU students and faculty and is currently ready for clinical testing. As is the case with many low-income countries, most births do not take place at healthcare facilities and thus HIV testing of infants is rare, if not non-existent. In Uganda for example, out of the 1.2 million births each year, 100,000 infants are exposed to HIV. Out of these 100,000 infants, an estimated 20,000 babies in fact end-up with an HIV-infection, with only approximately 0.007% of all infants actually getting tested for HIV.  GHI has taken students to various low-resource countries, such as Botswana, Mozambique, Namibia, South Africa, Tanzania and Uganda for market research and market entry analysis.

During their market analysis, GHI researchers and developers have identified several problems, which are an intrinsic part of the lack of market structure. One of the problems is the inherent shortage of healthcare workers, especially technicians. Imagine a piece of equipment breaking in a lab in Durban, South Africa. The closest technician who would be able to fix this piece of equipment lives in Nairobi, while the next closest technician lives in Germany. GHI researchers, therefore, identified the need for portable, easy-to-use, rugged and accurate devices. Another problem researchers identified lies within the distribution of lab results.  Researchers analyzed how long it takes for test results to be delivered to the patient.  In Botswana for example, this could take between 2-16 weeks, in Mozambique at least 3 months, and in Namibia 1-4 weeks. The unpredictable timeframe of delivering tests to the patients results in a backlog of unclaimed results. Most patients can’t afford to return to clinics every week to check in on their test results.  This is a major problem that needs to be solved to assure the delivery of lab results to the patient.

While there are many obstacles in bringing a product to an underdeveloped country, there are routes for the development and distribution of diagnostics products that will benefit global health.  GHI researchers and developers are optimistic and are looking forward to see the first product clinically tested soon.  More updates to follow!

Download a PDF to Kara Palamountain’s NU@AHEAD presentation here.

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The Importance of Approaching Global Health Issues from Multiple Perspectives

During her studies at Northwestern University, Christine Klotz (’06) was involved with NU’s GlobeMed chapter. Her involvement in Global Health didn’t stop there.  Read an interview with Christine who now works at World Food Programme (WFP) in Kenya, where she is a nutrition consultant at the 70,000-person Kakuma Refugee Camp.

Christine Klotz and a UNHCR staff member survey the construction site for a new school in a Somali area of Kakuma

Name: Christine Klotz
Major/Minor: European Studies / Italian
Year of Graduation: 2006
Student or Local Group Involvement: GlobeMed, Women’s Varsity Soccer, Campus Kitchens Project
Email: Christine.L.Klotz@gmail.com

What did you do after graduation and where are you now?
After graduation in the summer of 2006, I moved to Quezaltenango, Guatemala, to continue developing a partnership that began during my undergraduate career between a community health-oriented language school (http://www.pop-wuj.org/), the Northwestern University GlobeMed chapter, and a non-profit organization based out of my hometown of Indianapolis (Timmy Foundation).  Long-term objectives of the partnership included personal hygiene education and a patient referral system to link residents of a rural indigenous village with the public city hospital.

In the fall of 2006, I began a Master of Public Health program at George Washington University.  To fulfill my Master’s thesis, I interned at World Food Programme (WFP) headquarters in Rome in 2007, using Bangladesh health survey data to validate various child anthropometric measurements as indicators of food security. The internship led to my current position as a WFP nutrition consultant in Kakuma Refugee Camp, Kenya, where I have coordinated a micronutrient supplementation program for the 70,000-person population for the past 2 years.  In July 2010, I will transfer to the WFP operation in Juba to collaborate with the Government of Southern Sudan Ministry of Health and NGO partners in establishing and reviewing policies and programs that incorporate the recent developments in public health nutrition treatment, detection, prevention, and advocacy.

Each refugee receives cooking implements, blankets & sleeping mats, jerry cans, tent roofing materials to construct a more permanent house, and a card which recognizes refugee status and provides access to medical services and to collect a food ration

How did your global health involvement at NU influence your career choice and life in general?
I did not discover the global health department until my last year at Northwestern, which precluded the possibility of a major or minor, although I was able to enroll in two departmental courses as a senior which certainly influenced my life direction – Annamaria Pastore’s “Introduction to Health and Human Rights” and Michael Diamond’s “Managing Global Health Challenges.”  I still remember reading Prof. Diamond’s course description that “the responsibility for ensuring the public health rests with governments at local, national and international levels…interventions require cooperation and partnerships between civil society organizations, corporations, businesses and individuals.” In a departure from what had been a largely theoretical liberal arts education to that point, I appreciated the solution-oriented approach and personal call to action. Other students must have felt the same because the class filled up so fast that I had to audit it!

While the NU courses delved into many complex aspects of emergency humanitarian law and policy, I personally found the cost effective and well-understood mechanism of several interventions to strongly resonate–like, for example, blanket provision of vitamin A capsules for a few cents per infant.  Another amazing aspect of the introductory courses was the variety of NU students they attracted, which underscored the importance of approaching global health issues from multiple perspectives.  The combined factors of the introductory global health courses inspired me to consider post-graduate studies in public health, which has since evolved into a career commitment in emergency humanitarian work.

Do you have any advice or suggestions for current global health students on how to get involved or how to choose their career path in global health?
Try to navigate the delicate tightrope walk between policy and program design and high quality research since reliable data powerfully influence policy and program recommendations but ethical dilemmas may regularly surface.  Regular presentation of your research and/or volunteer experiences at conferences and international forums can also provide invaluable opportunities to interact and collaborate with fellow students and leaders who have engaged in complementary initiatives elsewhere.

What’s one life lesson that you have learned since you started working?
As emphasized in my first global health course at NU, successful public health initiatives require concurrent input from various stakeholders, but I have already experienced in my brief career that coordination remains a major stumbling block in the field.  A key way to mitigate the fragmentation of service delivery in times of competing priorities is emphasis on the beneficiary perspective because a technologically advanced solution can never supersede the cultural relevance of the intervention.  On a personal level, this has translated to regular efforts to engage refugee community groups in the planning and decision making process about the micronutrient supplementation intervention in addition to the usual high level policy makers.

– Christine Klotz is a nutrition consultant for the World Food Programme. The views expressed are hers alone.

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