‘Rich Diseases’ in Poor Countries and the Importance of (Good) Data


Patient in the Palliative Care Ward getting morphine

Even before we got to Malawi, I knew that we were going to be spending a decent amount of time in the Palliate Care Unit, as we were supposed to work on DataPall and introduce a new morphine dosing system (Jesal did a post on it!). Thinking that I would obviously write a blog post on Palliative Care, and that I pretty much already knew why Palliative Care was so important in Sub-Saharan Africa (SSA), I started writing up a draft back in the comfort of the States. I began the post by throwing around a couple of HIV/AIDS statistics—like how almost 11% of the Malawian population has been diagnosed with the disease [1]—and then about how the incidence of Cervical Cancer in SSA is among the highest in the world [2]. Then I would give a little background about how the expanding field of Palliative Care—the field dedicated to the relief of suffering—was primarily due to the unfortunately high burden of HIV/AIDS and cancer.

Fortunately, I got a bit distracted/ lazy and decided to just stop writing at the introduction. Because fast forward almost two months and I now have a very different view about Palliative Care, at least how it is conducted at St. Gabe’s. Like I said, when I first stepped foot into the Palliative Care Unit, I was expecting it to be almost entirely cases related to HIV/AIDS and cancer. And while there were many, many cases related to both pathologies, the unit’s patients represented a much more diverse spectrum of diseases.

Heart Failure in Africa!?

Perhaps one of the most surprising findings was the high rate of Congestive Cardiac Failure (CCF). In fact, CCF has the distinction of being the single highest diagnosis for St. Gabe’s Palliative Care Unit (at least since DataPall was implemented 2 years ago). CCF occurs when the heart is no longer strong enough to pump all the blood that is rushing into it, so blood begins to pool up behind it—fluid then begins to accumulate in the legs, abdomen and lungs (depending on what side of the heart failed). CCF is an extremely difficult disease to live with, has a tendency to worsen over time and has a high mortality rate.

I was especially surprised at the high number of cardiovascular patients in palliative care because we’re told that heart disease is a distinctively Western problem. Heart failure is one of the so-called ‘lifestyle’ diseases, caused primarily by hypertension, which coincides with the high salt, high calorie, sedentary western lifestyle.


DataPall report for Outpatient Diagnosis for the past year. CCF is the highest single diagnosis in the ward, and CVA has a surprisingly large presence as well.

However, while Malawian citizens will probably not develop hypertension at the same rate as Americans, if someone here does develop hypertension, it tends to go undiagnosed and untreated. Untreated hypertension can lead to horrible sounding things like  heart disease, stroke and organ failure (including heart failure). So a lot of the CCF patients first come in here with the characteristic symptoms such as troubled breathing and swollen legs, but when their blood pressure is taken, it often turns out to be ridiculously high (I’m talking over 200/120).

Preventable (but Hard to Treat) Disease

As far as my studies have suggested to me, it seems like the only treatments for heart failure are ventricular assist devices (LVADs/RVADs), a full heart transplant, or an artificial heart (if transplantation is not feasible). These options are not feasible for many western patients, not event to mention Malawian patients. Thus, the majority of CCF patients are referred to palliative care for symptom management.

This is a disheartening trend, as hypertension (and then heart failure) is well known to be very, very preventable with changes in lifestyle. And while I know this is anecdotal, I’ve heard from two different people (a palliative care doctor and a community health worker) that even a simple reduction of dietary sodium is usually enough to bring their blood pressure back down to manageable levels.

More Data, More Diagnostics and More Prevention

There is very little data on the prevalence of heart disease in Africa, as it tends to be both poorly diagnosed in the community and very low on the priorities of international health organizations. This is understandable, given the huge health challenges that the continent faces with HIV/AIDS, TB, malaria and many other diseases. However, even the sparse data suggests that our observations here could be generalized to much of the rest of SSA [3]. I never thought I’d say this, but I now strongly believe that it is imperative to raise awareness of hypertension and heart disease in Africa.

We need to catch the attention of both NGOs and governments so that (1) better data can be collected to help us better understand the issue and (2) more cases of hypertension can be diagnosed early, and then appropriate lifestyle interventions can be implemented. We need not develop the same huge cardiovascular research network as in the west for this problem—it does not seem like the newest expensive medications or devices are needed in this case. What is needed is attractively cheap—just diagnosis with a simple stethoscope + cuff, and inexpensive lifestyle interventions like cutting out dietary salt and increasing physical activity.

But what other surprising health trends could be lying in Africa simply because of the lack of good data?

[1] www.unicef.org/infobycountry/malawi_statistics.html
[2] http://www.afro.who.int/en/clusters-a-programmes/dpc/non-communicable-diseases-managementndm/programme-components/cancer/cervical-cancer/2810-cervical-cancer.html
[3] Opie LH. Heart Disease in Africa. The Lancet 2006; 368:9534.

Quote of the Day
“Guys, I think I accidentally killed the lizard!” – Jesal (really, really distressed)

DataPall: Collecting Data in the Palliative Care Ward

Picture of the old DataPall Home Screen (A). Our updates have slightly altered this, but the visual appearance is pretty similar.

If I had to point to a single encompassing experience for our time at St. Gabriel’s, it would definitely be palliative care data collection. DataPall, as I mentioned earlier, began as an on-site project by a group of interns in 2012. The expansive need for palliative care, spanning from high burdens of HIV/AIDS and Cancer, and the cumbersome method of manual recording, inspired the students to create a centralized database. With the goals of user-friendliness and efficiency, they used Microsoft Access to provide a platform to chronicle patient appointment, diagnosis, symptoms, medications, and considerable other information. (Note: DataPall can be found on SourceForge, if you’re interested in checking it out.) Even today, the palliative care staff truly appreciates the innovation. As government reporting is a major impetus for data collection, this system, with its simple reporting functions, saves tremendous time! As the interns did before us, we were tasked to understand and continue system updates based on user and personal experience. A pervasive lesson in global health initiatives is that implementation is never quick or simple; instead, it requires long-term commitment and understanding to attain its real influence. We were the third group to experience this lesson firsthand.

CORRECT data collection is VERY hard

The current methods of collecting and recording palliative care data allow for many errors. The potential for mishaps begins at the onset of the doctor-patient interaction. The nurse/clinician handwrites the patient information, such as name, village, diagnosis, etc., in a giant journal. Sometimes this data can be copied from the patients’ health passport, but often the patient must verbally provide such information. Error 1. Verbal communication – spelling spoken words is not easy. Error 2. Often a patient doesn’t know his exact birthday or name’s spelling. Then the nurse, once all the outpatient visits are completed, comes to the DataPall office to retroactively input the data. However, often the scribe and reader are different. Error 3. Illegibility. Moreover, DataPall allows for significant typing. Error 4. Unplanned Typos. Together, all of these errors, had led to large amounts of duplicate records and misspellings of common diagnoses/drugs. While drop-down menus were used, they did not provide all the options necessary to be singularly effective. Thus, human input was greatened, as they typed the diagnosis, drug, etc. in the “Other” blank. Overall, the data was not as correct as it could be.

Our first task was to improve the drop down menus and reduce the amount of typing required. Our reasoning was less typing = less errors. Joao created a program to go through all the data (over 6,000 appointments and 1,500 patients) to find the common misspellings and “other” inputs. Then, we manually corrected the spelling errors and added the additional options to the drop down features. We also converted certain original typing features into drop-down/click menus.  We hope that these corrections will make the data more useful. Having consist methods of inputting a certain diagnosis or drug will allow the program to lump the total and report correct amounts, which were otherwise lost with misspellings and variable spellings.

Second, we compiled the duplicate records. Joao created an algorithm based on name, village, age, diagnosis, etc. to identify possible repeat patients. Then, we went through and ensured the matches. This step concluded the “cleaning up” phase. Like the drop-down menus, we wanted to create an on-going method to prevent future errors. This includes a new, highly technical searching method (so glad to have Joao’s programming skills), which will alert the inputter in an efficient/comprehensive manner to possible matches.

Our final step to completing these updates is better tailoring the reports to the needs of the hospital. This is something we will soon work on. We want to move beyond just numbers and incorporate visual diagrams to convey this information.

As you can tell, our work isn’t necessarily the most glorious, but we believe it can go a long way in improving care and reporting. Proper data goes beyond just analysis. The hospital is required to report such values to the Ministry of Health. This allows the government as well as the hospital to better allocate and request resources. We are happy to assist in this process.

Beyond DataPall

Our time in the Palliative Care ward opened us to another great opportunity.to improve data collection and resource allocation – an electronic medical record focused on monitoring Morphine usage and stock. In fact, today, we had a chance to briefly showcase our project to two government officials including the national coordinator for morphine distribution. There is considerable enthusiasm and we are truly excited for its impact not only at St. Gabriel’s, but Malawi at-large. As the end draws closer, our list of things to complete seems to incessantly rise. However, we couldn’t ask for it another way; we are honored to contribute in a lasting manner. More about this and my adventures outsourcing the Ob-Gyn Stirrups to local companies next time!

Baobabs

A couple weeks ago, the interns and I spent a great weekend in Liwande, where just outside of our sleeping area was this MASSIVE and very beautiful Baobab tree. In Africa, many people consider baobabs the “tree of life” given how useful their fruits, bark, and general existence is to many humans, animals, and insects alike. They are among some of the largest trees in the world and can only be found in Madagascar and a few African countries, with a few species that exist in Australia. You might even recognize baobabs as the tree from the Lion King, in which wise baboon Rafiki lives! Basically, it’s a pretty neat kind of tree.

 Baobab in the Lion King!

The first time I had ever heard about the baobab tree was when I read the Little Prince by Antoine Saint Exupéry as kid. The significance of the chapter didn’t really resonate with me until a few years later after having to reread the book. But, on a very superficial level, I can still distinctly remember staring for HOURS at the funny little baobab book illustration, thinking about how much I’d like to see such a unique, monstrous tree in real life. So, when I finally had the chance to sit at the base of one of these incredible baobab trunks, I could barely contain my happiness and excitement.

 The Baobab tree in Liwande     Baobab drawing from Le Petit Prince

Now, bear with me for a second, I promise I’m not just writing about some kind of strange fascination with a particular genus of tree! I’ve been thinking a lot about these baobabs and the Little Prince chapter lately, not because we see baobab trees and baobab products everywhere, but mostly because of what the trees represented in that one extremely short chapter. Their symbolism in the Little Prince, I think, ties nicely to my internship experience with BTB over the past few weeks.

To summarize, in the book, the little prince — who lives in a tiny, tiny little planet — views baobabs trees as these terrible, destructive forces of nature that have the potential to wreck havoc on his planet if left to grow to their full size. In order to address this possibly, and quite literally, enormous problem, the prince is very careful to uproot the little baobabs bushes the minute he recognizes them for what they are. He has a conversation with the author about how before the baobabs reach their huge size, that they naturally have to start off really small — almost invisibly– as seeds. He knows that by staying disciplined and constantly addressing this problem even before it has begun, he will be able to protect his beautiful home (and precious rose) from being overwrought by the trees’ massive roots.

You can read the entire chapter that talks about the baobabs here: http://www.angelfire.com/hi/littleprince/framechapter5.html

The baobab chapter’s “life takeaways”, to me, seem to tie into the type of work that we’ve been doing here in Malawi, mainly when it comes to the importance of 1) preventive maintenance in up keeping the hospital’s medical equipment 2) routine and consistency in enacting long term change, and 3) an underlying sense of urgency to drive even the most monotonous and seemingly insignificant tasks forward,.

Preventive Maintenance

 Whether it’s after you’ve bought you first car, or if you’re talking about about dental hygiene or healthcare or whatever, you’ve probably heard about the importance of preventive maintenance. Countless studies can demonstrate the cost benefit of preventive measures to avoid problems with your car engine or a disease like diabetes, and it comes as no surprise that if you can avoid a problem from occurring in the first place, you’re in a much better situation than if you were to have to treat the issue once it’s occurred.

So, basically, like the nearly invisible baobab seeds, preventive maintenance is something that is extremely easy to overlook, especially here in Malawi, when I can see that there are so many extremely pressing matters that need to be tended to around the hospital every single day.

Particularly when working with PAM and in the CPAP office when equipment gets brought in from not just Queens but from some of the district hospitals, it is especially frustrating to seeing broken pieces of equipment that could have easily lasted a few more years if only there had been someone to effectively maintain the device within the clinics.

Just look at the picture below where we had no choice but to replace the grey filter on the left for a new, white one, just because it had gotten so dirty that I was no longer salvageable. (Also, the picture of the filter here is not even CLOSE to how dirty it used to be! Caleb had literally scooped off physical clumps of dirt and grime that had been stuck to the outside). Essentially, a tiny, literally 30-second job of cleaning the gross particle or inlet particle filters about once or twice a month, could literally have prevented the oxygen concentrators from experiencing a significant number of the larger issues due to debris and dust collection within the sieve beds and compressor.

 Dirty Filter

There is a lot of value in taking measures to avoid problems from occurring in the first place. Essentially, by taking a leaf out of the prince’s book by ensuring that we stop these baobabs brushes from growing into the massive problems that they are, we can tackle a lot of challenges even before they’ve turned into actual trees.

 Fixing the dirty oxygen concentrator

Sustainability

The baobab chapter also makes me think about many of issues with sustainability with the CPAP project, most of which Carissa and Aakash already touched on in their blogs not too long ago. Through their travel experiences, they talked about the challenges with getting CPAP to really “stick” within the hospitals that they visited. The CPAP is currently not the “go-to” therapy for preemies with respiratory problems, and there are a lot of barriers to ensuring that this new technology be accepted and smoothly incorporated into the regular hospital pediatric protocol.

Namely, I believe that the CPAP or any new technology, medicine, or protocol has to become a natural as part of a hospital’s “morning toilet” as our dear little prince would call it. It is ultimately routine, an understanding of the need for the technology, and a familiarity with the equipment that is going to drive life-saving changes around the hospital.

And through the many tech surveys that Emily and I have had the chance to do together over the past few weeks, if there’s one thing I’ve learned, it is basically that the nurses run the show at Queens! Therefore, if a technology isn’t well received by them, if the nurses aren’t trained to use it properly, or if they don’t understand the need for a particular device or protocol, the change just isn’t going to happen! Nurses are the soldiers that are in clinic day in and day out and are undoubtedly the people who will be using these new technologies once they’ve been introduced. So if the training, education, and positive “attitude” towards the technology isn’t there, the nurses will never be willing or able to develop a sense of routine and familiarity with the device, and the technology will flop.

It is the prince’s habit of checking for the baobab brushes (initiated and sustained by his knowledge of the importance of catching baobabs early and ability to use a shovel) that ensures the safety and health of his home from the baobabs, in the same way that the nurses habits at Queens have the potential to do the same.

Sense of urgency and necessity

The last “life takeaway” about the importance of a sense of urgency in driving change seems kind of like a stretch, so I thought I’d include a snippet of the chapter for you to read before I go any further.

Perhaps you will ask me, “Why are there no other drawing in this book as magnificent and impressive as this drawing of the baobabs?”

The reply is simple. I have tried. But with the others I have not been successful. When I made the drawing of the baobabs I was carried beyond myself by the inspiring force of urgent necessity.

I included the illustration of the baobabs within Le Petit Prince earlier in the post, and it is undoubtedly one of the best drawings in the entire book. Naturally, the author takes the time to mention how his best work was propelled forward through a sense of responsibility, obligation, urgency to get it out there, and I believe that those are really important things in driving sustainable change forward.

With regards to the CPAP, I think that an underlying sense of urgency and understanding of the potential for device to save the lives of premature infants has to be there for the project to be a success. I believe that this sense of importance can certainly be instilled through doing a good job with presenting the evidence and the numbers that show that “hey this technology really needed and it WORKS!”. But perhaps more importantly, I think this sense of urgency should be translated to a sense of responsibility and determination among the people putting the device to work, to help them push through the massive frustrations, roadblocks, and even heartache, that come with working in this field and setting.

In short, baobabs or global health projects, even as massive as they are in their full form, have to start small, almost invisibly, and the changes that ultimately help them die or thrive, are equally as tiny and long term.

And to wrap up this blog post, just in case you didn’t catch on how incrreeddiiibbbllleee I find these trees, I’ve added a lovely picture that Carissa took with the African sunset in the background. Unreal. 

Our Last Week in Malawi!

Hi everyone!

Sorry for the delay in blogging! The last week has really flown by, with an incredible amount of tech surveys, data analysis, prototyping, and catching up with our professors! It’s amazing for me to think that in less than one week, I will be on a plane home to the United States! I feel like I’ve spent so much time in Blantyre, but at the same time there is so much I wish I had the time to get done. But for next year’s interns, I think we have identified several projects that you could definitely keep working on.

 

1. Connecting with PAM

 

Our work with PAM this summer has been great. Jacinta, Caleb, and I have made a lot of friends with the technicians and engineers that work with Queens, and we have also started to get some great feedback on our user manuals! One big project, however, we didn’t have a chance to get finished. Jacinta had the goal of creating a spare parts needed database, that would allow medical equipment suppliers to see what PAM needs to fix broken equipment. As Caleb mentioned in an earlier blog post, many of the breaks PAM sees are fixable, but there are no spare parts to be used to fix the devices! This means that PAM becomes a graveyard of broken equipment. This is especially frustrating to the people who work at PAM, as they are definitely skilled enough to fix the machines, but they do not have the tools to do so. When organizations donate used medical devices to QECH, PAM becomes a replace service, not a repair service like they are intended to be. Additionally, money can be saved by donating spare parts, as these usually cost less than medical devices.

 

2. Prototyping at the Poly

 

Working at the Poly has definitely given all three of us a chance to refine our design skills! Given two projects from Rodwell, we were successfully able to prototype a proof of concept breadboard for our most recent electronic IV drip device. (With a special thanks to Caleb for his amazing knowledge of electrical engineering and all his hard work this weekend). Though at times we were hindered by lack of spare parts, I really appreciated the opportunity to gain more experience designing medical devices, and it was neat to be able to receive on-site feedback about the feasibility of our devices. To whatever interns come to Blantyre next year, design projects are a great way to help out at the Poly while also improving your own technical skills!

 

3. DataDataDataData

 

With a large clinical trial such as bCPAP, it seems like data collection is never complete! In fact, just this week when we were visited by Dr. Oden, Dr. Kortum, and Dr. Leautaud, we had the chance to go back through all the charts at Queens to do an analysis of a patient’s temperature throughout their hospital stay in relation to mortality. Many of the babies that come into Queens are hypothermic, and figuring out if this is significantly related to mortality would be a great reason to start an incubator, baby warmer, or any heating device type of design project. BTB is always looking for new and innovative ways to analyze data, getting as much information as possible to improve future devices, so there will always be plenty of this work around.

 

Otherwise, Caleb, Jacinta and I have had a busy week wrapping up things here in Blantyre, buying souvenirs for our families, and saying goodbye to the friends we have made. We had a final meeting at the POLY with many of the electrical engineering faculty with whom we worked, and it was good to hear that everyone had a positive experience working with us! Additionally, tech surveys have been flying along, and Emily is officially best friends with many of the nurses here. Jacinta and I are trying to buy as many of our favorite South African – Cadbury candy bars as we can, and Caleb and Emily have learned how to make nsima (a Malawian staple). I’m sure I will be much more upset about leaving all the friends I have made when I am on a plane going home, but right now I don’t think saying goodbye has quite sunk in yet. I still feel like next week I will wake up in my bed at Cure, ready to eat some Mendazi (Malawian doughnuts) stuffed with cikonella (a nutella-like spread that has become a BTB intern staple, though it is not a traditional Malawian staple) before heading off to complete some data entry at QECH.

 

At the end of this week, the five of us are having a last-weekend hurrah, and going on another safari! Hopefully this time we will be able to see some lions and giraffes and such : ) So, if I don’t blog again until I get home, that’s the reason why! However, for any loyal readers who were worried I wouldn’t reach my 2 blog a week goal, don’t worry. I promise to make my quota of 18 posts by writing two very introspective blogs upon my return to America about what I have learned and who I have met in Malawi!

 

Some of the capacitors for our prototype... bigger than expected

DataPall

DataPall, the brainchild of the interns two years ago (link to all their blogs), is an electronic medical records systems for the Palliative Care unit here at St. Gabe’s. The previous interns here noticed that the small staff in the unit would have to spend weeks manually adding up figures to give quarterly reports to the Ministry of Health, so they designed DataPall so that reports could be generated with the push of a button.

While DataPall has been a huge help to Palliative Care— the team here now only spends a day or two on the reports—there have still been several issues preventing a large-scale rollout. One of the most significant of these issues is accidental duplication of records. As the literacy rate in Malawi is quite low, it isn’t uncommon that patients don’t know how to spell their names, so the nurses and doctors will sometimes write down alternate spellings from appointment to appointment. Additionally, sometimes patients will change last names or accidentally switch their first and last name. Therefore, if you type the misspelled name into the current DataPall search bar, no match will show up and a new patient will be created (even though the patient record already exists under a different spelling).

This accidental duplication of records has lead to the gradual artificial inflation of patients, skewing the data that the unit is supposed to be reporting. This issue became so problematic that one of the doctors once said, “DataPall is telling me that there were 20 new patients last week, but I only saw about 15 different patients!”. To overcome this problem, they oftentimes have to go back into the paper records to make sure that the reports are giving the right numbers. While staff still doesn’t have to spend weeks generating the reports, they still have to spend a couple days to fix the errors.

Using a broad set of matching criteria, we generated a set potential duplicates, of which 121 patient records (!) were actually duplicated. After merging the duplicates, we were then able to feed this data back into the computer (using a machine learning algorithm) in order to generate an algorithm that can better predict whether two records could be a duplicate, based on common misspellings, similar village, etc. We’re really happy that the duplicate searching algorithm actually works quite well (98% sensitivity and specificity), so we’re in the process of implementing it into the workflow of DataPall as well as incorporating it into our new project, Morphine Tracker (read about it on Truce’s blog!).

5 ways this internship is like…Cricket!

One of our house mates had a co-worker who plays cricket semi-professionally in the UK. While he was here, he joined up with a Malawian club team and we went as a group to watch him play in the championship game.

          

 (Jacinta and Emily watching the cricket match from the edge of the field)

 

Disclaimer: I knew almost nothing about cricket before a few weeks ago, so if this post doesn’t make a lot of sense, pardon me. I think there are some interesting analogies, so here goes…

 

5 ways our internship is like cricket

  1. At first, it was hard to understand what was going on. As an American, I had never been to see a live cricket match before and knew almost nothing of the rules. Even with their patient explanation, it took a while before I got the hang of what things to watch for and what was important. In the same way, when we got dropped off in Blantyre, we were uncertain of what specific projects would come our way at first, but after a short while, we were able to find our niche.
  2. Each team spends half the time fielding. Even worse than baseball, if you’re team is not up, you have to hold out through about two hours of being on the defensive, not being able to score. Although this seems non-productive, you’re setting yourself up to succeed later. As we have seen in our internship, results don’t come automatically, patience is required; just because you can’t see the immediate fruit of what you’re doing doesn’t mean that it doesn’t have purpose
  3. There are two runners at the same time, but only one gets to bat. The other runner (the non-stricker) just watches and runs, but they are ready to take their turn at bat depending on which side they end up on. Teamwork is crucial. One lesson I have learned on this internship is that it’s hard to accomplish everything we set out to do. Sometimes I’ll have a rough day, and one of my teammates can carry some of the slack. Another day, someone will be sick and one of us will pick up a task they were going to accomplish. Throughout this process, communication is crucial, just as with the two runners. If one of them doesn’t communicate, they could be knocked out of the game.
  4. One form of cricket is called a Test Match, which can last about five days. The title comes from the fact that these matches are demanding, specifically in the areas of endurance, perseverance, and strategy. The match is not won in the first hour. In the same way, medical device implementation requires foresight, planning, and a lot of sustained hard work. Even though we are only here for a couple months, this mindset changes the way we work. Instead of trying to swing for the fences, I can be most helpful to the project in the long run by fitting my work into the overarching strategy, supporting the program associates rather than trying to be a superstar and do my own thing.
  5. Cricket brings people together. At the end of the day, you’ve worked hard, and whether you “win” or “lose”, you’ve had a chance to bond with some really great team mates. #teamworkmakesthedreamwork #malawi2014

Five Ways This Internship is Like Insanity

Hello everyone! I can’t believe I only have ten days left in Malawi! These last few weeks are definitely flying by, and with Dr. Oden, Dr. Richards-Kortum, and Dr. Leautaud in town for the week, I feel like our schedules are even more packed than usual! Caleb, Jacinta and I have been busy this week, wrapping up some of our final meetings with PAM and the POLY, and organizing the last of the repaired CPAPs in the office. I feel like my post at the end of the week would be a better time to wrap up the loose ends of this week, so today I am going to jump on the bandwagon and write a different format of posts:

This summer, our team has really bonded over our (almost) daily insanity workouts, so I thought I would write a post about the similarities I see between insanity and the BTB internship!

1. It Requires Dedication

Both BTB and Insanity workouts are a commitment. At the beginning of the summer, my fellow interns and I committed not only to work out together, but also to serve as interns together. Neither of these commitments can be successful if they are taken lightly. Doing an insanity workout every day may mean making sacrifices, staying up late, or taking some extra time to do a workout instead of reading a book. However, in the end, the feeling you get after a workout is definitely reward. Similarly, the BTB internship is not a commitment that can be made lightly. Accepting this internship for the summer meant committing to work during, before, and after the internship to ensure the success of our projects.

 2. It Requires Hard Work

Not only do we have to be willing to put in work every day, but as interns and people who are working out, we need to be willing to work hard every day. It would be very easy to go to an insanity work out and jog at half speed, skipping half of the exercises. However, then we would not get in any better shape! Likewise, if we, as interns, sat around the BTB office all day and did minimal data entry and CPAP repairs in order to look busy, we would not be productive or helpful to the hospital.

3. The Results aren’t Immediate

Neither insanity nor the BTB internship have immediate results. Working out with insanity, it will take weeks or even months to notice that you are getting more in shape, able to run faster or do more push ups. Similarly, the changes we make as interns are definitely long term. Sometimes it will be months before the programs we make, CPAPs we repair, or manuals we create are implemented and used. However, in the long run, the work we are doing will make a difference.

 4. Teamwork and Encouragement are Key

Working out, or working in the BTB office, can be tiring and overwhelming at times. It is easy to struggle with the magnitude of work that needs to be done, not knowing where to start. Other days, when it’s raining outside and the work seems endless, it is hard to get out of bed. That’s why it is important that we as teammates are there for each other. If someone is having a hard day or a rough week, encouragement from teammates and working together can make a hard task easier or a bad day better.

5. It’s a Lot of Fun!

This entire summer has been lots of work, very rewarding, and also really fun! From insanity workouts (where Jacinta giggles the whole time and the rest of us die of exhaustion) to hanging out in the office, I am incredibly fortunate to have been given the opportunity to work with such a fun group of people!

DataPall and Morphine Tracker Projects

I apologize for the lack of posting these past few days, the past week has been pretty hectic. As mentioned before, our internship requires us to partake in 4 projects:
1. Gather feedback regarding the technologies from Rice design teams
2. Look for other problems to become potential design projects
3. Finish any projects the hospital may give us
4. Create our own project

In the past couple of posts I have talked about projects 1 and 2. I promise to write more about these in future posts! These past two weeks have been busy with the last two projects.

Hospital given project: DataPall Renovations

As a reminder, DataPall is a palliative care record keeping database using patients’ diagnoses, symptoms, and prescribed medications to produce reports. Designed by Rice interns two years ago, it has been successful in its long term goal: to be sustainable. It is still up to date with its data entries and has eliminated wasted hours in manual calculations. The palliative care doctors has asked us to eliminate the possibilities of duplicate records, create more readable and useful reports, as well as some other small enhancements to the database. Microsoft Access has been a challenge, but after a lot of research and looking up helpful websites (as well as reading Microsoft Access for Dummies and another Microsoft Access Help Book), I’ve definitely improved my knowledge of the database. To eliminate the duplicate records, Joao has created a searching algorithm that will produce matches once the database recognizes similar parameters between the name, age, and village. We will be adding graphs to the reports as well as organizing the charts to eliminate any confusion when reading them.

Our own project:
After spending a lot of time in the palliative care data records room, one of the doctors approached us with a problem. He is part of the Palliative Care Association in Malawi that meets once a month. Although St. Gabriel’s has DataPall, with one of its features being morphine usage record keeping, most hospitals do not have any electronic record keeping and must resort to the manual system. In their June meeting, it was clear that morphine record keeping needed to be addressed. Morphine usage records are necessary when the country imports morphine for the district hospitals to ensure that hospitals do not receive too little or too much morphine shipments. Most hospitals do this by hand and it can be very cumbersome and inaccurate due to human error as well as having duplicative patients. The doctor asked us to create a database that is similar to DataPall but much simpler and will only measure morphine usage and record morphine shipment records.

To make the morphine database more user friendly, on the home page I added a section where the database would keep updating the amount of morphine stocked up. It updates whenever a patient appointment is added with an output of morphine or when a new shipment gives an input of morphine. Next to do on my list is to add warning messages. Once the morphine stocks come under a certain limit, a warning message will come up to remind the user. Reports on how many patients are currently on morphine, what kind of morphine is being used the most (tablet or liquid, 5 mg vs 10 mg, etc), and other facts need to be readily retrieved. Many updates are coming and we have agreed to start a pilot study at the St. Gabriel’s pharmacy and see the outcome of it.

On another note:

This past weekend we ventured to Zambia for my very first safari! It was everything I expected it to be and more. At Marula Lodge we stayed in furnished tents right next to the Luangwa River. Across the River was the South Luangwa National Park. Elephants and hippos were able to cross the river to our side. We were able to see many hippos and elephants right in our camp!

Palliative Care – Morphine Dosing System

We have spent the majority of the past few weeks in the Palliative Care Ward working on DataPall and the Morphine Dosing System and I am truly excited to share our progress. However, before discussing such activities, I thought I’d share some observations on palliative care.

Overview of Palliative Care

As described by the WHO (World Health Organization), palliative care emphasizes improving the quality of life of patients who are faced with life-threating illnesses through alleviation of suffering/pain as well as psychosocial and spiritual disturbances. While this serves as a broad characterization, the implementation of these goals varies significantly in Malawi versus the States.

In Malawi, the palliative care ward focuses on all patients who have incurable diseases. Most predominantly this includes HIV/AIDS and Cancer, but this also spans congestive heart failure, diabetes, hypertension, liver/kidney failure, and other non-communicable diseases. Palliative care is not only about end-of-life care, but anything that requires long-term management/symptom control. For example, most individuals live long and productive lives with anti-retroviral treatment for HIV/AIDS or insulin provision for diabetes. Often many of these diseases in the US are managed in the primary care setting and are not necessarily linked with palliative care (at least in the onset). Another important distinction is the use of palliative care in the two countries.

Using cancer as a case study is particularly informative. In Malawi, there is a double burden of disease, with still high levels of preventable/treatable infectious diseases, along with changing lifestyle factors (slowly increasing tobacco usage, changing diets, etc.) that are seeing a rise in non-communicable, chronic diseases. This especially includes cancer. Unlike the major infectious diseases, Malaria, HIV/AIDS and Tuberculosis, cancer has been underfunded and under-recognized as a growing problem. There is an overwhelming shortage in resources to screen, diagnose and treat cancer. There is no national cancer policy nor CT-scan in Malawi. Moreover, the total oncology specialists exist in the low single digits (for a population of 16 million)! The only major screening program is for cervical cancer, but is not the most effective. Not to mention, a lack of awareness prevents patients from seeking care in a timely manner, which is essential for cancer treatment. However, even if diagnosed early, there is essentially no radiation therapy and very limited chemotherapy. In addition, there is only one integrated cancer center in Malawi with exorbitant wait-lists. One’s best bet would be to fly to South Africa; however, the ticket is far out of reach for the vast majority of Malawians and government sponsorship is also not dependable. Side note: Many of these cancers could be prevented or delayed with greater emphasis on prevention (e.g. the leading cancer for males is Kaposi’s sarcoma, which afflicts immunocompromised patients with HIV/AIDS and cervical cancer for females, which can be decreased with HPV, Human papillomavirus, vaccination). What I’m getting at with this rather long description of cancer care in Malawi is that when a patient comes with cancer the only option for a physician is morphine and bisacodyl, palliative care of a terminal sickness. Whereas in the States, care is coordinated with surgery, radiation, chemotherapy and pain relief. It isn’t until all the resources have been exhausted, that pure end-of-life care is emphasized. This is underscored by the fact that about a quarter of Medicare’s budget is spent on those individuals in their last year of life.  Thus, the role of palliative care in both countries holds very different domains. In the US, it is often the very last alternative, but in Malawi, it is often the only (final) option.

Morphine Dosing System

Given the central function of pain relief in palliative care, it is critical to properly dose and administer morphine (opioid) to the patient. Currently, patients, who often come from distant villages, receive a month/two month stock supply of liquid morphine in cleaned-out pharmaceutical bottles (used to be old water bottles) along with a small plastic dosing cup. Thus, the largest venue of palliative care is the home (only 4 beds in the ward). The patient is instructed to the volume per dose and the doses per day necessary. This method, while still effective, has been shown to be inaccurate, prone to spills and reliant on patient numeracy. A group of freshman Rice students tackled this problem by devising a 30 cent solution – the morphine dosing system (pictures below).

So far we’ve gathered feedback on usability through trial/training of a single patient (picture) and found that the device was effective as well as easy-to-use after calibration (note: setting at precise dosage is conducted by health personnel). However, we realized that the system was best suited for patients with stable pain levels (constant morphine dosage), as changing the dosing levels (moving the stopping ring) would be challenging for the patient. One ancillary problem we had to face in trying to expand this system is that it relies on the presence of empty water bottles; we learned that the hospital no longer has access to such bottles. Thus, we are hoping to set up some sort of recycling system to provide for a continued flow. Currently, we’ve just been collecting the empty ones used at our guest house.

In order to expand this system from 1 to 50 patients, this upcoming week I’ll be working on creating a user-manual for the health care provider as well as translating an instruction pamphlet for the patients into Chichewa (or basically asking Alex, the palliative care nurse, for his expertise :]). I am excited about the process of patient education as we work to get this technology into the field. Moreover, I hope to gather the device’s potential as well as immediate impact regarding morphine administration. Unfortunately, time is ticking. It’s important to get this rolling as soon as possible, so that we can be there in person to address any issues that arise. Anyways, that’s it for Morphine Dosing for now. Next week, I’ll continue the focus on palliative care, but will share our work on DataPall: A Electronic Medical Record for the ward.

A Drawing of Blantyre

I realized looking back at my previous posts that I had promised a description of Blantyre which I haven’t given yet. The start of this week has been occupied mostly with more technology surveys which I have already discussed quite a bit, so I figured now was an appropriate time to write this post.

Blantyre has a population of 650,000, which is roughly the size of Denver, Colorado. It is surrounded on almost all sides by mountains, including Mt. Magete which is the third tallest mountain in Africa. As one of the largest cities in Malawi, Blantyre is unique from a lot of the rest of the country in that it has a lot of poverty but also a lot of significant wealth. There are large banks and car dealers that look entirely American, with big glass windows and gated parking lots. We have also glimpsed sides of the city itself that seems to house some very nice office buildings and commercial areas. At the same time, we have seen some of the less affluent parts of the city that act as a reminder that Malawi is not the US. We see children leading blind grandmothers around the markets asking for change, and people walking through town without shoes on their feet. Malawi has a per capita GDP of $900 (the US’s is $52,800), and it is considered one of the poorest and most densely populated countries in the world. This fact may be less apparent in the parts of Blantyre we spend most of our time, but it is nonetheless true in the city.

One of the most colorful and interesting parts of the city is the Blantyre market. The market is very large, and it offers not only produce but also street food, fabric, electronics, clothes and shoes. As a visitor, I have learned that it is important to hold your ground when bargaining or you could easily be subjected to prices much higher than what they tend to charge locals. Employing the little chichewa I know always helps. The produce market sells almost anything you could think of; fresh vegetables, fruits such as bananas, oranges, and apples, passionfruit, pumpkins, eggs, garlic and ginger, coconut, papaya, avocado, and even live chickens. We have also bought popcorn kernels and dried hibiscus flowers which you soak in boiling water to make tea. We tried what is called a “national cucumber” which looked like a small cucumber that had long spikes protruding from all sides of the fruit. Even though we didn’t know what to expect, we were somewhat disappointed in the national cucumber- it tasted like an unfortunate combination of a lime, a cucumber, and an onion. In the breads and dry goods section, they sell something called an “Obama roll” which is a large, puffy bread roll. Thandie from the office told me that the bread was so named because it is a beautiful roll, and the people in Malawi consider President Obama to be beautiful too.

It is also always exciting to explore the other parts of the market as well. We have found a lot stands with a lot of beautiful chitenge fabrics, and I think after our six or so weeks in Blantyre we have made a pretty significant contribution to the income of some of those merchants. The chitenge is a 2×1 meter piece of cotton fabric which serves indiscriminate uses in Malawi. Women tie them around their waists and wear them as skirts, and sometimes wrap them around their heads in a turban-like manner. Sometimes they will tie the chitenges around their backs with  young children inside of them, so that the infants rest on their mother’s backs and the moms can have both hands free. Around the hospital chitenges are laid out like picnic blankets as families wait for their loved ones inside. On cold days people wrap up in them to stay warm, and in the church service we attended they were even included in some of the hymns as props. All around the city men sit outside on the streets with sewing machines, and you can bring your fabric to them to make you a dress or a pair of pants.

Unfortunately the other interns and myself haven’t had that many opportunities to explore much past the market except for some of the stores and tailors, and the wood market. Blantyre is a pretty large city to cover by foot, and where we are staying is about a forty minute walk to the start of downtown. I hope that my description of the market and the basic information about Blantyre helps to draw a clearer picture of the city, although as a visitor and not much of an inhabitant myself I guess I am not completely qualified to try to draw a complete one. Here are some pictures I have of the area that may help further the image: