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The Power of Patient Narrative

“The whole world, all human life, is one story.” We as humans are hard wired for the lynn-kelsolistening and telling of stories. Our stories define who we are as individuals, and as a community. If we wish to have meaningful and strong relationships in our lives, we must be able to listen effectively. We can choose what we hear and what we do not hear, what we listen to and what we do not listen to. While one can hear without any specific purpose, listening takes purposeful self-awareness, focus, and unselfconsciousness. Northwestern professor Lynn Kelso, who has devoted her life to the art of storytelling, says it best: “Hearing is a sense. Listening is an art.”

Northwestern Community Health Corps is a student organization focused on empowering community members to take charge of their own health through the implementation of informational health desks located in libraries. As volunteers at the health desk, we sought the advice of Professor Kelso in order to improve our ability to be empathetic and active listeners when hearing health narratives from desk patrons. Storytelling or patient narrative plays a central role in the health care provider-patient relationship. As Kelso illuminated, the ability of any healthcare professional to actively listen to the stories of patients will define their capacity to treat their patients effectively. Patients must believe that they can truthfully and comfortably share their story with someone who will listen in a non-judgmental way. They must not feel that they have to say what the healthcare provider wants to hear, nor feel that they must align with the healthcare provider’s religious, cultural, or social beliefs about the practice of medicine.

In order to be effective and empathetic listeners of narrative, Kelso emphasized that healthcare providers must take the “I” out of the conversation. In other words, the listener must not talk about his or herself and rather focus intently on the speaker. More so, Professor Kelso contends that 90 percent of communication between the teller and the listener occurs through non-verbal body language. Your eye contact, posture, voice tone and responses reveal if you are truly listening. This emphasizes why active listening cannot occur through non-in person communication methods, such as texting.

Health care providers must learn to be attentive, active, and engaged listeners in order to provide patient centered and culturally competent care. In order for healthcare professionals to receive this listening training, a multi-disciplinary collaborative approach is necessary. The healthcare sector must seek advice from those who specialize in speaking and body language, such as Kelso who hails from the theatre department here at Northwestern.

This push for multisector collaboration in developing listening skills of health care providers, has been reflected in the newly developed Feinberg curriculum which places an emphasis on medical humanities and communication training. Medical students, both here at Feinberg as well as other medical institutions across the country, are now required to take courses in the medical humanities, in order to aid in their ability to decipher narratives and communicate effectively with their patients. Even this quarter in Weinberg, Hosanna Krienke has been leading an English course focused on the medical humanities. I am a student in the course, and she has encouraged us as future healthcare providers to pay close attention to narrative, the way in which we listen, and most importantly the language we use to communicate. Words have the power to shape the physician-patient relationship, and thus should be used only with specific purpose and acute awareness of language’s ramifications. In order to understand what language will define our vernacular as future healthcare providers, we must start with listening to every patient’s narrative. As Kelso says, “listen to your world and the stories they tell. They are all a part of your story.”

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Northwestern GlobeMed Team’s Research Establishes a Foundation for Partnership Moving Forward

Northwestern GlobeMed’s research team, Udita Persaud, Jimmy Wester, Camille Cooley, and Aysha Salter-Volz, received funding from the Radulovacki Global Health Research Fellowship to conduct research in the communities surrounding their partner organization, the Adonai Child Development Centre, in Uganda.

Tell us about your project.dsc_0327

Udita: Globe Med has a partner organization in Namugoga, Uganda and we go every year to evaluate our partnership and do research. Our research focused on looking overall at the assets and resources in the community and how people seek healthcare, who they go to healthcare, how they think about healthcare. We got to use really cool qualitative research methods along with community-based participatory research methods.

Camille: We spent six weeks in Namugoga, Uganda, which is a village about an hour and half outside the capital, Kampala. We were able to interview a lot of people in the local village but the area is very dense in terms of the number of villages that are there and the number of communities. So we got to meet a lot of interesting people and hear a lot of really interesting perspectives and make a lot of really great friends there as well. So I think we all really miss it.

Why did you decide to research this topic this year?

Aysha: I think in the past a lot of the research for Globe Med has had a very narrow focus and we wanted to do something that was more holistic and that gave our organization a better understanding of the community for future projects. Also it hadn’t really been done before and [in GlobeMed’s past research] we weren’t really getting the breadth of knowledge since we were focusing more on individual cases.

Jimmy: I think in past years we’ve had very focused research without that foundational knowledge of how the community functions or how the whole system works. We wanted there to be less discontinuity from year to year so we thought having this background would be really beneficial research for years to come. When we end up doing more specific research, we’ll have a way better understanding. With that, Camille was working on a pre-departure guide. Orientation and pre-departure materials will help other groups moving forwards so that they have a better foundation.

Camille: I think in the past, a lot of the teams going in didn’t know what to expect. It was very much a learn-as-you-go process. We were able to accumulate a lot of the knowledge we gained through the entire process and I’ve managed to put it in a pre-departure guide for future teams which I think will be pretty helpful in supporting whatever future research occurs.

dsc_0586What kind of preparation did you all have?

Udita: I think that was a big problem because there’s no pre-departure and we’re not part of any set program, which can be really difficult because you don’t even know what to expect. We did talk to the student who went last year—a couple of us had dinner with them. We were able to ask them questions but for the most part, we were going into it blind.

What was your most meaningful experience abroad and what did you learn from it?

Camille: I think one of the moments that stood out was during an interview. One of the interviewees had been interviewed the year before and really wanted to know what came out of this research, and really wanted to know what we were doing to give back to the community. That was very powerful to me because the community is very invested in the people that live there, and really want to make sure that the work that gets done is moving everyone forward. To me that was a very powerful moment in regards to the potential impact we have in communities abroad.

Jimmy: I remember some interviews where people were critical of the work we were doing and making sure that they were holding us accountable. When we came in, they were like, “oh we remember you guys from last year. You asked us so many questions last year, what’s come of that?” Obviously we are not directly accountable for the work of last year’s team, but we want to be able to have at least some identifiable change that we have accomplished. That really coalesced to a higher standard and made us want to do better and make sure that we are in communication with next year’s team.

Udita: We also got funding to have a partnership as part of our research to make our work more sustainable. We tried to do this through a partnership where Northwestern students and Ugandan students can come together and do research together. It’s often challenging when undergraduate students come to another country that they don’t have a lot of knowledge about. So Ugandan students can come in and help guide us through this. We can also learn a lot about research together. So we’re trying to put that together for next year.dsc_1003

What was your most challenging moment or aspect, and how did you cope?

Aysha: I had a really hard time being abroad the whole time but it was really cool to just realize that I was in a different country and there was so much there that I would have never been able to experience otherwise. For many reasons, it was very grounding to interview people and realize that I was in a completely different part of the world but at the same time just with people. So that made it better but it was still very difficult. More specifically, it was difficult combatting mixed feelings about why we were there and whether or not our research was actually worthwhile for the community or whether we were inadvertently exploiting that for our own academic agenda. Even though we wanted to do something that was for them, it was harder to reconcile different power dynamics. So on top of the challenge of being abroad, having that cognitive dissonance was really hard to justify.

Udita: Also, our research just didn’t get cleared [by the Ugandan research board] in the beginning, which was a big set back for us. Whenever you go abroad, that’s something you don’t think about. We did everything in our power and did everything we should have done and we got there and they were like, these are not the right things. You haven’t gone through the necessary protocols. Having to deal with that is really hard and not knowing where to turn is really hard because your principal investigator is here in Evanston and maybe doesn’t know how they do things in Uganda. So that was really hard for us in the beginning because we didn’t even know if we could do our research.

How do you think your experiences have impacted your future goals and interests at Northwestern or after? Both as individuals and for Globe Med moving forward?

dsc_0243Camille: Personally, it’s reaffirmed my passion for health. I know I want to stay in the health field and focus on public and global health, which has been really gratifying. If anything I think the trip itself has led to a lot of questions. For example, in what capacity do I want to work in this field? Is global health or public health the right fit for me? It was overall a great experience in shaping how I see my future and my career goals. I think in terms of Globe Med, we mentioned an upcoming partnership and that will be a huge part of how Globe Med evolves and how we mediate the relationship between our partner and our students. If anything, I think it’s going to make our relationships with the people in Uganda richer. I think chapter members are going to be able to have more substantive experiences that they can hear about from future research team members.

Udita: As a graduating senior, I think it’s reaffirmed a lot of things I like to do and brought up a lot of questions that I have with engagement abroad and how we work in global health abroad. I really like thinking about things like capacity building and partnership building. I want to continue doing that because I have a lot of questions that still don’t have answers.

Aysha: Similar to Camille, going abroad and doing the research got me thinking constantly about health related issues which reaffirmed that I want to do something in health. It also made me realize that I want to work internationally and also focus on health issues domestically too. A lot of the time it was interesting to be so far away learning about health disparities in that community and think about how that wasn’t my community. There are so many health disparities within our own communities back here. I think I also learned a lot about Globe Med that I didn’t really realize before and would not realized if I hadn’t gone on the trip.

Jimmy: It was a very positive experience over all, but at the same time it allowed me to think very critically about dsc_0156international involvement. We definitely benefitted the community in some capacity but at the same time I had to question how much good we are actually doing. So with that, I think I still want to go into the health field but I want to be more present within whatever community I am involved in. It also made me understand the importance of qualitative research since I think I am more prone to the medical standpoint of wanting to be as efficient as possible.

Do you have any advice for students wishing to conduct research in an unfamiliar location?

Udita: We all did a lot of prep work before we went abroad and tried to make our design as reasonable as possible. So going there and finding out nothing turned out the way you expected shows you really need to gain knowledge about where you are going and have someone there who is there to advise you in country. Having connections wherever you are researching in the academic field. You also need to be very open and flexible with whatever might come your way.

Jimmy: Not to be cliché, but be genuine, be present, and don’t be afraid to ask for help. It’s always hard being in a new community so it’s important to show that you care about the work that’s being done.

dsc_0152What do you hope to do with this work?

Udita: We just got our last couple of transcripts back and now we’re trying to compile it all into a comprehensive report before the end of this quarter. We have already had the chance to present preliminary findings to the community, which was an amazing experience. We hope to have the final report translated [into the local language] for our partner organization so that they can disseminate that report to the community members, especially the community leaders.

Jimmy: Our last week there, we had a focus group with village health workers as well as a discussion with community leaders and during both of those, people expressed a lot of interest in getting a copy of the report from this year.

 

 

 

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Primary and Community-Engaged Healthcare at the Frontline of Medicine

 

Image result for shailendra prasadDr. Prasad is the kind of doctor you want treating your family and community.

His story began in South India. In 1992, there was a cholera epidemic in the entire district but no one died from the infectious water-borne disease. This was due to the fact that for the past three years, the community had been talking about and working towards water hygiene. Prevention, according to Dr. Prasad, is not very “sexy”. It does not require any high tech magic-bullet solutions. In this community, the life-or-death intervention was finding where people collect water and wash their clothes.

“What is primary care?” Dr. Prasad asked us, and we gave the usual responses: treating basic health issues, providing vaccinations and treating families and communities. He introduced us to the model of the “five C’s” of primary care: first contact, continuity, comprehensive, coordination, and community. Primary care professionals are at the frontline of medicine. They are often the first person both the sick and the well encounter, and as we all know, first impressions are very important. The patient’s first interaction with a physician can determine their future relationship with the whole field of medicine. If patients feel misunderstood, disrespected or fearful, they will be much less likely to come back for future checkups or to seek care for serious health conditions. This is where continuity comes into play. Primary physicians are there for the long term – for the vaccinations, height measurements, yearly checkups, sexual health education, chronic diseases and beyond. Our bodies exist in and interact with our social worlds. Only physicians who know who you are, not only your family history but your healthy and unhealthy habits and all the social determinants that affect your unique health and body, are equipped to treat you with the dignity and knowledge that all people deserve. Comprehensive and coordinated health care requires this contextual understanding, so that diabetics, for example, not only receive a prescription for medicine, but are also referred to a nutritionist, psychiatrist, shelter, or any necessary financial resources. The final “C”, community, is how individual health becomes part of a greater and healthier whole. As the final piece of the puzzle, this is where long-term changes in overall health can occur.

The current U.S. healthcare system excels at treating illness. Promoting wellness, on the other hand, is not a political or financial priority. Following the Neo-Darwin organism theory, interventions only occur after the absence of health and manifestation of illness. The success of a system based on curing rather than preventing is much easier to quantify and evaluate, but at what cost (pun intended)? Hospitals and clinics lack the metrics to determine wellness and evaluate preventative measures. Dr. Prasad, however, has his own “grand slam” metrics: questions like, “how are you doing today?” “how are things with your family?” and “do you feel like you are being taken care of here?”

Dr. Prasad showed us a quote: “Our concept of health is to make social change”. His advice? Get involved in family medicine. Following that statement, he told us he may or may not be biased on the matter.

An innovator in primary care, Dr. Prasad is a practicing physician and lecturer working at the intersections of medicine and public health, including training providers on issues of racism and inequality, improving quality of healthcare in rural areas, and conceptualizing ways that medicine can address wider social determinants of health—issues that can only be addressed outside the clinic.

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Mabie Fellowship Funds Archit Baskaran’s Research on LGBT+ Health Care in Nepal

Archit Baskaran, a recipient of the John and Martha Mabie Fellowship for Public Health Research, spent his summer researching the experiences of LGBT+ patients in Nepal. Archit says he ultimately wants to turn this research into a book and continue with this research as a career.

Tell us about your project. How did you decide to study this topic?unnamed

I was investigating Blue Diamond Society in Nepal and their hospice program for LGBTQ+ people. I was trying to elicit illness narratives from people who were receiving care, either hospice or palliative. I was also trying to figure out what types of programs they were running and the types of care they were providing. A lot of people in Nepal end up receiving quality care and feel comfortable opening up about their identities and problems.

I think it’s my fascination with death and mortality that sparked my interest in this topic. One of my close friends and debate coach passed away when I was a senior in high school. That really took a huge toll on me but it also catalyzed my interest in the medical maladies at the end of life. When I applied to college, my essay was about death and the ethics of mortality and how doctors treat patients in their last days.

Then I started reading about it. Atul Gawande, one of my role models, wrote a book called Being Mortal: Medicine and What Matters in the End investigating a lot of these topics. So I sent him an email about my interest and how I had this idea. I didn’t think he would reply but he ended up responding. I still remember, he responded January 3rd of this year. I knew at that point that I should definitely go for this. His email really gave me a lot of motivation. Eventually, what started as a Circumnavigator proposal got narrowed down and I decided to focus on Nepal. What they manage to do in Nepal is revolutionary—nobody has been able to do what they’re doing there, even in America I think.

Then I started my literature review and read over three hundred articles on whatever I could find. There was a meta-analysis that said there was something like twelve studies on this topic in the world. I tried looking up as many of those as I could and they even said: we need more data. For example, nobody has studied hospice care for trans people; it’s mostly been on gay and lesbian people and in America. So there was a huge knowledge gap.

unnamed-2How did your experience on the ground vary from your expectations?

The biggest thing that I think everybody knows about research is that there are so many unexpected variables that you cannot control for until you are there. To be honest, the organization is underfunded. It doesn’t have a lot of staff. It doesn’t really have a functioning website with enough details; it doesn’t even mention the hospice care program on the website. So finding out information was very difficult until I actually landed. The only way I could communicate with them was through email since it was a logistical hassle to try to call them and figure things out. Once I landed there, the biggest thing I noticed was that the hospice care program is more than just a hospice care program. It is a homeless shelter, it is a palliative care facility, it was a temporary resting place for children or old people, and it was also partly an orphanage. It was run by significantly fewer people than I thought. They didn’t have all the equipment that you would see in a Western-scale hospice facility like tracheotomy equipment. It was a very old building. All of these things were very shocking to me.

At that point, my research, which was just centered on end of life care, expanded in scope. I had to now talk about care in general. Some of the patients I interviewed were nearing the end of life but none of them were specifically in their last days, presumably. Two or three people I interviewed reported getting ill four to five times a month. The doctors I spoke to called it terminal HIV. Most of the narratives I elicited out of people at the end of life came from the people who cared for them and eventually saw them pass. They told me the entire life stories of those people and what happened to them from the day that they came in to the day that they died.

The biggest thing for me was arriving there and realizing that what I wanted exactly was not going to play out. It ended up being even better than I expected because once I got there, this health care program was doing more than giving hospice care to people, which allowed me to expand my research hypothesis. A lot of what I learned could even point to potential solutions for people in the West. Something I didn’t really realize going in was that we have a lot to learn.

What was your most meaningful experience abroad, and what did it teach you?unnamed-3

There was one hidden trans woman that I met in an outskirt village from the main city. It was in a remote area with high poverty rates. The compound where we were sitting was constructed from cow feces; it was just a very rotten environment that they were living in. In that environment, this woman was a farmer, still hidden obviously, and she was forcibly married by her family. She opened up about her whole life. Anything you could imagine that could possibly wrong in someone’s life had gone wrong in her life. It was a very saddening interview and at the end of the interview I asked if she could describe just one moment in her life when she experienced happiness. She said, “no, I can’t describe a moment where I felt happy.” She was also, based on the way she described her illness, nearing her end. When I left that area, I knew that I probably wouldn’t see her again. I didn’t have that same emotional feeling with a lot of others because I always said I was going to keep my distance but I really couldn’t with that one.

At the very end she said, “in my last days, if I could, I would try to buy a small shirt for my daughter but I can’t afford it.” I learned a lot from her, because she spoke about all of the things that everyone else had spoken about and more. She was one person telling me everything that was wrong with the system in both a social and institutional sense. I got a lot of narrative from that especially.

What do you plan to do with this research moving forward?

I think that experience is what inspired my goal afterwards. Initially when I was going in, I didn’t know exactly what I wanted to do with all of this. I knew I wanted to approach somebody and analyze it and maybe work towards a study of sorts. But that interview in particular changed my outlook. Instead of only restricting it to academia, I kind of wanted a general readership for a lot of this. I mean people suffer around the world but people don’t even know about what this organization has been doing or even that fact that there is something called LGBTQI hospice care. Then the idea for a book came in and that’s what I am talking to Professor Locke about. That’s the long-term goal right now. I started writing and I don’t know if it will go anywhere.

Basically I want to empower their voices by telling their stories through their words. It will be their words. If it’s translated into English it’s not a hundred percent but it conveys their meaning to the best possible ability.

How has your summer experience impacted your future goals and interests at Northwestern or after?

I am going to start medical school next year. Once I am there, this is what I’m planning on doing—longitudinal research. I think this is what I want to do with my life.

Also, I ended applying to Fulbright by taking a segment of this and expanding upon it. I chose to write a proposal about transgender people and their health disparities both in palliative and hospice care. My data did not uncover too much on this topic and there’s a lot to be researched there.

The second short-term thing was that I was able to meet the hospice care professor at Feinberg. He has agreed to be a mentor for this project. We’re going to analyze the transcripts and everything together, provided I get my IRB approval for that.

Do you have any advice for students wishing to conduct research in an unfamiliar location?

I think cultural competency is of prime importance. It’s very easy growing up in a Western society, America specifically, going to Northwestern, to embrace a neo-colonial mindset of the savior complex. Their culture in many ways is rich and it adds to our knowledge. I think embracing the growth mindset instead of the helping mindset is hugely important. I have to admit that when this first came up, I was in this paradigm of I want to go to developing countries and help people there. Especially Nepal shows me how much we lag in even just a general understanding of rights and how we can provide for people who are marginalized. I think that’s the biggest thing. And on that note, the cultural competency thing is important. Before going into these places, it’s vital that people at least try to understand what they’re getting themselves into and not be that dumb tourist who goes in very uninformed and ends up offending somebody.

Lastly, when you are there, try to expose yourself as much as you can to different events and people. I would regularly try meeting people on the weekends that I didn’t really know. I would spend personal time with the people in the organization outside the research time, which is why I think the research was so successful. Especially as a foreigner, there is a weird dynamic of, I’m the researcher and you’re the research subject. But I used to go out with them to the tourist district and we would go shopping together, watch concerts together, I would just go with them to hang out. And there would be days I didn’t do anything for the research but would just go to spend time with them. Building those relationships definitely helped me surpass my research goals in the end.

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Radulovacki Research Fellow Subin Hwang Investigates Refugee Health Care in Germany

Subin Hwang was one of the recipients of the Radulovacki Global Health Research Fellowships. She spent her summer in Berlin, Germany studying health care for refugees. This was the second consecutive summer that Subin has spent working with refugees and she hopes to one day work with marginalized populations as a doctor.

Tell us about your project.unnamed

I was in Berlin studying refugee health, the gaps in medical care, and barriers to accessibility. I was at a hospital where they allowed me to shadow their doctors and all of the different outpatient clinics they had for refugees specifically. On a daily basis I was shadowing, and towards the end I conducted a lot of interviews with the doctors, nurses, and interpreters. I also administered surveys to some of the refugees who were coming through the clinic.

How did you decide to study this topic?

I worked with refugees last summer in a nonprofit and I was helping them settle into America with social security, health care, employment—everything you would need to be equipped in a new country. That experience was really rewarding and something that I really enjoyed doing. Right after I finished that internship, there was something coined the “refugee crisis” all over the news. Many refugees had crossed the border into Europe, fleeing their war torn countries. That got me interested because I had just been working with refugees and had heard some of their stories. It was something I was really passionate about so I wanted to see how they were doing it Europe since their system is very different from ours, particularly the health care. I wanted to investigate how their system was handling the influx, what successes they were having, and how they were handling the challenges they were facing.

unnamed-3How did your experience on the ground vary from your expectations?

I expected it to be a lot like America since that was the only exposure I previously had to refugee healthcare. But it was a lot better than I had expected. For one, they had outpatient clinics staffed with doctors and nurses instead of just pushing them in with other low-income families or other marginalized groups. They also had a very efficient system.

In terms of my research project, I was expecting to work more with policy makers and overhead management but I was more on the ground with the doctors and nurses. Although it was different, it was still a very good experience and I got to see the difficulties at the point of service, which was very eye-opening.

What was your most meaningful experience abroad, and what did it teach you?

While I was immersed in my research, I also made it a point to engage with the community outside of the clinic. I attended a lot of events and there was one poetry event for refugees who wanted to share their poetry. It was incredible. I was so moved and everyone in the room was crying. It was a good way to humanize the population because I saw them in such huge numbers through the clinic. The way Germans do things is super efficient so tons of people come through very quickly. It’s good since more people can get what they need and be seen but I didn’t get that emotional component as much. So this event was a nice way to hear their stories since I think sometimes you lose sight of that when you’re working at such a quick pace.

What was the most challenging moment or aspect, and how did you cope?unnamed-1

There were moments when I didn’t speak the language or have all the information I needed or there was nothing I could do. It was challenging to see the systemic issues still at play that I, as a single person, could do nothing to change. It was pretty difficult seeing that on an everyday basis but there are people who are acting to change that.

Did you encounter any cultural differences that required getting used to?

A ton. With the doctors and nurses, I think it’s a German cultural thing to not be very personal. You don’t really talk about your life or your weekend. That was something I had to get used to. There it’s very much the mindset of: we work, we go home and we keep our personal lives separate.

With the female refugees, especially in Muslim cultures, their voices aren’t as valued as the men sometimes. Seeing that in a health care setting was disheartening because they may have things they want to talk about but they aren’t allowed to or they silence themselves. That was a different cultural barrier that I noticed.

Has your summer experience impacted your future goals and interests at Northwestern or after?

My summer at the nonprofit and this past summer doing research definitely solidified my desire to work with marginalized populations whether it’s refugees or immigrants or low-income families. More than anything this summer made that passion concrete. My future goal is to be a doctor but that is very far away. Having these experiences where I am actually interacting with people makes more of an impact than working with numbers, for example. I really appreciate the opportunity and it’s definitely something that will impact my future goals.

unnamed-2Do you have any advice for students wishing to conduct research in an unfamiliar location?

I think people shy away from doing anything abroad or anything away from a group of friends. It differs for each person—some people are very comfortable with that while others aren’t. I personally wasn’t that comfortable with it but I put myself out there and it was work that I really wanted to learn about. So I think if you are driven by a topic you are passionate about, the location shouldn’t be that big of a factor. College is the time to take advantage of those opportunities. I don’t know when else I would spend a summer in Berlin. Use the opportunities that Northwestern offers you to really expand upon what you are passionate about.

What do you do with this work? What are your next steps?

I will be using this research for my honors thesis. I will be analyzing the data further and I will be relaying all the key findings to my supervisor at the hospital. He will be taking all the findings and will take them into account for their policy changes as well. So it is not only research that will be beneficial for my learning experience but it will also hopefully affect larger populations and policies.

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