Stakeholder Questions & Key Customers

  1. Identify three different primary stakeholders on your project, and come up with a list of 10 distinct questions you would ask each of them. Remember the Aspirational / Emotional / Functional categories of needs and desires and try to find a balance of questions that might give you information in each of those areas.

 

Three primary stakeholders in our project are our service providers, our advocates, and our users. 

 

Our service providers are the healthcare professionals and nurses who will be administering the tests we design in country. Ten questions that we might ask them include:

  1. What are your personal goals as a healthcare professional?
  2. What are some services you used that have improved your ability to provide care?
  3. Do you deal with any specific problems that you think could easily be addressed in your industry?
  4. What do you enjoy/dislike about working in the healthcare industry?
  5. What do you think people misunderstand about Sierra Leone’s healthcare system?
  6. What could be done to make your day to day work life better?
  7. Are there healthcare devices that you find difficult to use? Are there ones that you find easy to use? What about them makes their use easy/difficult?
  8. What do you believe are the local community’s perspectives on the healthcare system?
  9. What roles do local healers play in the healthcare system? 
  10. What do you believe is the general public’s understanding of sickle cell disease here in Sierra Leone?

 

Our advocates will be those in Sierra Leone who we partner with in order to raise awareness about the symptoms of sickle cell disease, as well as anyone who supports our venture. Our advocates also include the health administration of Sierra Leone to continue the widespread implantation of our device and venture. Ten questions we might ask them are:

  1. What are some of the main struggles you have faced trying to raise awareness about sickle cell disease?
  2. What could be done to make your day to day work experience better?
  3. How can our venture help yours?
  4. What do you believe should be our main concern/focus in the process of implementation of our device?
  5. What does an average work day look like for you?
  6. Why do you do the work you do?
  7. What are some of the most important values in your life?
  8. What have you found are the greatest misunderstandings about sickle cell disease in Sierra Leone?
  9. What communication tactics work best when explaining the disease and the importance of knowing symptoms and causes?
  10. What experiences/mistakes have taught you the most about what works and what doesn’t work for improving awareness about SCD? 

 

Our users are the newborns and all others that may use the product. In the case of the newborns, the questions may pertain to them but will likely be asked to mothers. We may ask them:

  1. What reservations would you have about using our product?
  2. Would you feel comfortable with a small amount of blood being taken from your newborn for this screening?
  3. What do you know about sickle cell disease?
  4. Do you have any questions about the purpose of this device?
  5. Are you able to travel to a hospital or clinic to give birth? 
  6. Are you planning to give birth in a hospital/clinic, or at home?
  7. Have you been tested for SCD or the  sickle cell trait?
  8. Have you thought about family planning as it pertains to SCD?
  9. How do you and your family prefer to receive information?
  10. How do you receive healthcare? OR Do you receive healthcare?

 

 

  1. Identify all of the key customers for your product/service/creation/solution (your “animal,” if you will). Name some specific ways that you will insure that your project’s “animal” will meet all of their Aspirational, Emotional, and Functional needs and desires.

 

The key customers for SicklED are the community health systems and administrations, parents of infant patients, and ultimately the newborns being tested. Our project must ensure participation from the community health systems for implementation to work. Some incentive should be involved because at the end of the day these organizations need to make money. This could be the promise of an increase in patients with SCD who were diagnosed by the device that need treatment. Or, the incentive could be a portion of the profit with an agreement that SCD treatment will be expanded at that location to a reasonable degree. Functionally, the device must be easy enough to use and interpret for local health workers. We plan on having a local educator at each health system to oversee the trainees of our device, so their feedback on the usability of our test strip throughout the design process will be very important. Parents are also an important aspect of the implementation process. The thought of a diagnosis can be scary, especially when little is known about the disease in Sierra Leone. Throughout our implementation process, we will supplement the device with educational programs about the disease and the importance of diagnosis with one of our partners SCCAN (Sickle Cell Carers Awareness Network). This, along with the connection of diagnosis to possible treatment plans, will hopefully ease any worries the parents may have. Although newborns cannot necessarily speak on the device, we must ensure that it does not harm them in any way. We also must ensure that the diagnosis is acted on and that some form of treatment is available to meet the aspirational needs of these newborns. The project’s goal is to increase life expectancy and decrease mortality rates, which can’t happen without the availability of treatment. Ultimately, by implementing our test strip to diagnose SCD, we hope to raise awareness on the preval

 

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Midterm Presentation Reflection

  • Identify FIVE specific things in your slides that you could have done differently.

One of the comments from the judges mentioned including an image about the disease in adults – not just children. This is a very easy and specific change that could help viewers understand the device in one of our key targets – newborns. 

Building off of this, we could’ve clarified that the device works for both newborns and adults. Although the device is directed to newborns – because of the lack of diagnostic devices for this age group – its dynamic range allows it to also be accurate for adults. This is an important piece of information that we feel may have confused the audience. 

Another important thing that could’ve been done differently was the scientific jargon. Although this made sense to us and some of the judges, the students seemed to be very confused. Next time, we will do a very broad overview of the science of the device and go into more detail in the questioning as need be.

A few of the judges emphasized the education component of our project in their comments – which is definitely something we could highlight more in our presentation next time. Some of this was missed due to time constraints but, our team believes a clear slide about our plans for sickle cell education programs and their importance should be added next time. 

Lastly, the judges suggested having an additional slide on the future plans of the project. When we talked about the future, it was a lot of talking and few visuals. For next time, we could do a better job of adding engaging visuals on the slides that supplement what we are saying so that viewers can both see and hear our plans.   

  • Identify FIVE specific ways in which you could have delivered your presentation better.

One improvement that could have been made was to include the information about our partnerships and in-country connections at the beginning of our presentation so that we could avoid getting this part of the presentation cut off. Since our presentation ran a little long, our last slide had to be quickly summarized. This led to judges having questions about the education aspect of our project and how we were going to use our connections to help with the follow up procedure after diagnosis. By placing this slide earlier in the presentation we would have avoided this confusion and had more of an explanation. 

Furthermore, one of the judges suggested having an additional slide on the future plans of our project. While we included a general outline of what we were planning to do for this summer as well as fieldwork in Sierra Leone, we could have mentioned more specifics about what this plan will look like in action. This would likely entail shortening some of the background information we provided in order to allow for longer discussion of our fieldwork plans.

Another factor to consider to improve the delivery of our presentation would be to offer a more simplified and concise description of how our test strip scientifically functions. In our presentation, we summarized how our device works successfully, incorporating the most important scientific terms. However, we could improve in our summarization so that the general audience is less confused. 

From observing other teams’ project presentations, including the GRO Mushroom team, it would be helpful for our team to bring in a sample of our test strip during our presentation to allow the judges and audience to better visualize and understand our device and how it works. Having a physical sample in hand might allow our team to better explain how it functions. 

A final way we could have improved this presentation would be to have a clear signal to one another indicating which of us would answer each question or have a better way to determine who would speak. We had some feedback regarding talking over one another and this may have been a good way to reduce this issue.

  • Identify FIVE specific ways you could have built your credibility further.

We could have built our credibility further by mentioning the IRB approvals that we have received for doing fieldwork in Sierra Leone. This would allow the judges to see that our work is approved for in-country applications and that our project is quite credible. 

We also could have had more of a discussion around the previous awards and funding that we have received. As mentioned earlier, our project was cut a little short, and so an in depth discussion of our partnerships, awards, and funding was cut out. Allowing the judges to hear about the various organizations that have approved or praised our work would build further credibility. 

Another way we could have built credibility would be by elaborating on our connection to Dr. Jaja and the work that he will help us to do in the future. His collaboration with us will be extremely beneficial in furthering our venture and testing our device.

To further build our credibility, we could also elaborate on the systems of the operations of our project, for the wide-spread implementation of our device in Sierra Leone to make our dream a reality. We should further discuss how we plan to bring the materials of our test strip for use in Sierra Leone,  to educate health workers how to use our device to diagnose and record sickle cell disease, as well as implementing specific treatment plans. 

Another point that could have further built our credibility would have been to provide more specific information on our educational plan. I think we spent a lot of time on the device and its implementation, which left something to be desired for the other side of our venture. The education is very important to the success of the venture as a whole as well as the device implementation and may have deserved more time in our presentation.

  • Identify FIVE specific questions that you could have answered better. What was the question, how did you respond, how should you have responded?

One comment by a judge was that we should have limited the ‘cross-talking’ while we were answering questions. This is an extremely important point because looking at each other/trying to figure out who should answer what question is informal and takes away from the focus of our presentation. The judge asked us a question about the technicalities of our device and if we were using human blood to test our strips. Since we had been talking about the antibodies on our test strip we were confused on whether or not he was asking about the mouse and goat antibodies we used. We should have responded by simply explaining that we are using purified HbS and HbA from humans. 

Our answer to the question of what is our ultimate goal and metric of success could have been answered more clearly. We had stated that there would be ideally a reduction of under 5 deaths by 5,000 per year after 5 years of integration. It should have also been stated that ideally there should be a way to measure the success of the education aspect of our campaign. Another good metric is the test strip being in the standard operating procedures for all places in Sierra Leone where children are born. This is a difficult thing to quantify due to the high number of home births, but it should have been stated as well with this particular question.

There was a question on how stable the test strips are and how long they last. Our answer was that we have used them for a certain amount of time after sitting around for a few months. After this it devolved into talking about the different antibodies and hemoglobin being used. This could have been answered better by saying that we do not currently have a very good understanding of how long these test strips last, but we could have included that we have been testing in the lab with strips that were prepared in December. This may be the only accidental test to determine the shelf life because the strips were prepared before fieldwork that got canceled. However, they have been still functional in recent tests which show that they remain stable for at least ~2-3 months. This was mentioned briefly, but should have been the main point of the answer.

We were asked how our venture would be different from other similar projects in the past. We responded by addressing our competitors and the differences between us and them. This was a pretty effective response, but it may have been a little indirect for the specific question. It would have been beneficial to answer directly the core innovations of our device first. These are its low cost and being able to be used on newborns without diluting the blood.

Another question we were asked was is it cost prohibitive to test every single newborn. I think our team had a hard time understanding this referee because we did not mention cost in our answer to this. We spoke about how we would reach as many newborns as possible and attempt to test all of them, but we omitted the key point of the question, which was the cost of testing.

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Feeling Human & Engagement Philosophy

  1. List ten things that make you feel human.
    1. Eating and liking different food than other people
    2. Being exhausted after a long day
    3. Being sore after a tough workout
    4. The satisfaction of finishing something (a project, a race, a task)
    5. Discovering a connection with another person
    6. Caring about things that otherwise have no effect on my life
    7. Making music
    8. An answer to a question popping into my head hours after the question is posed
    9. Dreaming
    10. Gaining an understanding of difficult concepts
  2. Articulate your philosophy of engagement as it pertains to your work with the GSIF / LVSIF.  Specifically discuss:  (1) Why should I engage? (2) How must I engage? (3) With whom must I engage? (4) What kinds of challenges, opportunities, and approaches should I care about? (5) What might my epitaph read?

My engagement is based upon the potential positive effect that I can have on a very large number of lives. This leads into why I engage. I feel as though this program along with my own personal goals align in a way that let me see how much impact I can have immediately. This venture is set out to help solve an issue that can improve the lives of many people. I think the methodology for any kind of engagement must have a few basic features. Engagement should be respectful, responsible, well researched, and done with as open a mind as each individual can muster. The with whom I engage comes from more the project I joined than my own personal choice. Although it is not misaligned from demographics I may have chosen personally, this project chose to work with newborns in Sierra Leone due to it being a place of high prevalence and low diagnosis of sickle cell disease. It is a very good candidate for being a jumping off point in the expansion of this venture. I think that any challenge, opportunity, or approach that may make a change to the product or venture’s effectiveness is important to consider. Right now the primary objective of this venture is to increase the effectiveness of the test strip. This challenge requires a lot of consideration and work in the lab and must be tended to because it is currently a barrier to our success. Further, opportunities or alternative approaches should be considered if they have the potential to increase a venture’s impact while maintaining the same goals/morals that the project already had established. This is assuming that the project’s backbone is sound and does not require a great change to make it effective. Although I am not sure what kind of post-death procedure I will want to have done, I think it will likely be a cremation. In that case I will likely not have a physical tombstone and epitaph, however I have a few ideas for what I would like to be on a potential epitaph in my memory. It would likely reflect something that I value or my sarcastic personality. It may be something simple like “Aiden McCurley, Remember me as I was”.

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IRB & Presentation Plans

Does your work require IRB approvals…right now? At a later stage? If Yes, articulate your detailed IRB strategy. If No, explain why you don’t need IRB approval and identify situations when you might need IRB approval.

Yes, our team does require IRB approvals right now, seeing as the last approval we received was in 2021. IRB’s need to be updated yearly, so we will need to go through this process again. In order to go about this process, we will first fill out a research application form, in which we will outline our project and purpose, our protocol, precautions, confidentiality and consent. Something to consider for our project specifically are the elements of informed consent. We will need to ensure that those who potentially participate in the clinical trials in local hospitals and clinics fully understand the research we are conducting, data confidentiality, as well as risks and benefits. We will need to consider the best way that this information can be delivered; the most effective method may not be in an overwhelming document full of fine print. Furthermore, we will be utilizing letters of support from mentors such as Dr. Cheedy Jaja; he has already expressed his approval as our team has gone through the IRB application process previously. 

Since we will be working with human subjects, we will also need to fill out a human subjects application, in which we will outline the research design and research procedures, as well as how the data will be used to answer proposed research questions. We will also specify that anyone under the age of 18 will need a parent’s legal verbal consent. Furthermore, we cannot only test adults because newborn blood samples (which the device would be used for) are proven to have high fetal hemoglobin and less normal blood, so our device does not need a dilution step. The elimination of this step is preferable to increase efficiency. So if we were to test on adult blood samples, it would not provide accurate and useful results for the development of our research. 

Our team will also need to fill out a Lehigh University Review Board International Research Appendix, since our research will be conducted in Sierra Leone. We will have to specify that while our participants may not be fluent in English, we will have Dr. Jaja and his medical team who are fluent in the official language in Sierra Leone. Because children who are under the age of 5 will not be able to understand what our research entails, we will need to outline the significance of a legal guardian’s consent. 

Finally, we will utilize and update the consent forms we have already outlined in previous years to ensure the information is complete and up to date with our current project standing. This will include information on the voluntary nature of the study, how to go about contact and questions, consent, confidentiality, and duration. Willing participants that are adults will sign the form, while minors will need to give verbal consent.

Develop an outline for your mid-semester presentations. What supporting evidence will you provide for each point? How will you boost your credibility every step of the way?

Our presentation will start with an introduction of the problem of sickle cell disease in Sub-Saharan Africa. Then we will introduce our team – who we are and what we will be doing. We will build our credibility in this section by explaining our past accomplishments and really developing the idea of how far along our project has come. We will also build the credibility of our device by being transparent about where we are and explaining the science behind how it works in a way that the audience can understand. Then, we will switch to talking about Sierra Leone, specifically why our device will be important in this country and how we will be solving the diagnostics problem of sickle cell disease. The disease places a heavy burden on the healthcare system but is often overlooked, something we hope to change with newborn diagnosis. If we still have time, we can add a section about the financial plan to display the strategy to get this project off the ground. It is important that we are realistic about our project goals and have financial budget statistics to prove that we are capable of implementing our device in Sierra Leone. Our credibility will be established throughout the presentation through the transparency of what we know and do not and how we can improve in terms of our project goals. We will make sure to also have updated and credible data to support our claims about why this issue is important and why we believe we can make a difference. We will work to make our presentation simplistic and to the point, explaining all of the important details about sickle cell anemia (understanding that not everyone is familiar with the disease) and how we plan to tackle the epidemic in Sierra Leone through our diagnostic device. Aware that our test strip only focuses on diagnosing the disease, our team will be prepared to respond to our treatment and care plans as well to further build our credibility. Additionally, we will state which global partners we are in collaboration with to help facilitate our project and implement our device into Sierra Leone communities. 

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Design, Stakeholders, Validation, and Alien Concepts

1. Based on your life experience, skills and interests, what would a design process that is both uniquely yours and effective look like?
I think my design process would be based around my enjoyment of staying organized in my work. I think that being a student athlete for many years has forced me into learning effective time management and staying organized goes right along with that. When I make major decisions I prefer to lay out all the, information, pros and cons, and try to  educate myself first. I also, like to allow myself time to sit on decisions to eliminate an emotional response. Often this helps me get away from my gut decisions or reactions and make an educated and level-headed decision. Based on this I think my design process would be in three phases. The first of which would be to gather all the information I can. The second would be to give myself a few days to sit on the information. The third would be finalizing a design/decision.
2. Identify your three most important stakeholders and list five UNIQUE attributes for each one of them.
  1. One important stakeholder in this venture would be the children who are going to be the main target for sickle cell disease screening.
    1. The fact that they are children means that they have a unique level of autonomy. It needs to be noted that they do not yet have full decision making power as they may be infants or toddlers when they are being tested and cannot give informed consent to being tested.
    2. Children may require pediatric healthcare that may not always be available in Sierra Leone.
    3. Educational programs may need to be suited for both adults and children so that they can learn about sickle cell disease effectively. Children will not be able to handle the same content as adults, but still need to be informed.
    4. Children may be more inclined to be screened if their is some small treat that goes along with it. (more suitable for toddler age than infant)
    5. Schools may be a good place to hold mass screenings.
  2. Another important stakeholder would be the parents of Sierra Leone.
    1. This group is important because it has most of the control over deciding to be screened.
    2. The parents may have varying levels of education and information should be suited for that.
    3. Parents may have varying access to transportation and screening should be made convenient for them.
    4. It should be noted that children are not always born in a hospital and thus screening may need to be centered around a system that reaches more of the population.
    5. Parents are likely to have a low level of income and the product should be made affordable by their standards.
  3. A third stakeholder are the people that work in the healthcare systems of Sierra Leone
    1. They require a product that is easy to use and yields reliable results.
    2. Instructions should be clear and concise so that there is a high level of repeatability.
    3. The mobility of the healthcare system should be assessed so that we understand the reach that each facility and staff can have.
    4. Standard of training is likely different in Sierra Leone and that should be assessed when creating product instructions.
    5. Design should be made similar to other products that these health workers are familiar with to allow fast integration.
3. Identify three ways in which you will validate your project concept, technology, usability, and business model.
One way the effectiveness of SicklED’s concept/product will be validated will be through data collected through repeated lab testing. This justification would take time and repetition, but eventually should yield reputable results. Another way to make the concept validated would be to observe the success of similar programs and use their success to justify our path or plan for progression. A third way would be to have conversations with health professionals and get their opinion/consultation on our product and process. This along with their support could add reliability to the venture and allow it to spread more quickly. Depending on the magnitude of the professional’s renown, this could be more or less effective.
4.  Give three examples of something very interesting you learned from a friend that was a completely alien concept to you. 
One alien concept was the restaurant etiquette of other countries. It was very strange to me that waiters and waitresses were paid a normal wage in most places. I am so accustomed to the American custom of the staff being paid a very small wage and working for tips as their main source of income. Another foreign concept to me was that many people find that they cannot do work in their room. The idea of going to a library to study or be productive does not really make sense to me because I have never had trouble just doing work in my room. This is interesting because it gives an idea about how different people function and are effective workers in different spaces. A third concept is how some artists, musicians, etc. believe that they do not come up with any of their ideas for their work. Essentially, there is an idea that many believe to be the case, which is that there are ideas in the ether that exist and sometimes people catch them. This idea is very interesting because it does sometimes feel as though inspiration strikes people abruptly and ideas  just occur without warning.
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Questions, Logic Model, and M&E

1.List the top 20 questions your team needs to answer to advance the venture forward. Categorize the questions if necessary.

  1. How can the accuracy of our product be improved?
  2. Will the current infrastructure of health services in Sierra Leone be able to easily integrate our product?
  3. How can we reduce the cost of per strip test?
  4. Which design of the test itself is the most effective for accuracy as well as ease of use?
  5. How can we ensure/convince people to use our product as a regular part of post-childbirth care?
  6. What specific data are we looking to gather in Sierra Leone?
  7. How can we continue to develop current as well as establish new partnerships with those in Sierra Leone?
  8. How should we continue searching for funding for our venture? What proposals do we need to be writing and when are those applications due?
  9. What kind of system will it take to mass produce and distribute our product?
  10. What is the most important information to gather while in Sierra Leone to further the venture?
  11. Is our product currently too complex for health care workers?
  12. What is the most effective way to train health care workers to use the product in a consistent and replicable way?
  13. What is the best use of our current data when applying for grants/funding?
  14. What information is most useful in trying to convince others of this product’s effectiveness/usefulness?
  15. How can information on Sickle Cell Disease best be spread throughout different populations?
  16. What does post-diagnosis treatment and care look like? Does it need improvement and how can we help with that?
  17. Who will be in charge of producing the device in the long term?
  18. How can we prevent cross contamination on our product?
  19. What sort of interviews should we be conducting when in Sierra Leone? What questions will we be asking locals? 
  20.  How can our plan be improved to help the most people possible?

 

2.Develop and Visualize the Theory of Change (Logic Model) for your venture.

Inputs

  • Lab work, reagents, materials, time and labor to produce prototypes
  • collaboration with global partners and other sickle cell organizations

Outputs (Activities)

  • A more accurate and inexpensive product
  • System for treatment following diagnosis
  • System for mass production and use of the product
  • Train and educate medical professionals on a repeatable method to use the device effectively – measured by the number of clinics that have implemented our device
  • Number of children who are diagnosed correctly and are able to receive treatment

Outputs (Participation)

  • Trained medical professionals who know how to use the device and give effective plan of care based on results
  • Guidance from Sickle Cell Advocacy groups and World Hope International on how to maximize use and benefits

Outcomes (short)

  • Raise awareness of  Sickle Cell Disease
  • Increased rate of SCD screening
  • Increased access to diagnostic screening for Sickle Cell Anemia
  • Increased birth planning, especially among those carrying the sickle cell trait or those who have the disease
  • Medical staff will be able to educate mothers or legal guardians on how to receive treatment for SCD

Outcomes (long)

  • Reduce mortality rate of children across Sierra Leone due to Sickle cell anemia
  • Widespread access to a diagnostic device for sickle cell 
  • Community members fully educated on their options for treatment after diagnosis and how to proceed with carrier status
  • Increased life expectancy of children diagnosed with Sickle Cell in Sierra Leone

Assumptions

  • Hospitals will be cooperative in implementing our device
  • Many patients/parents of children will consent to be screened for SCD

External Factors

  • Economy fluctuations 
  • Political instability
  • Government regulations (pandemic)

 

3.Develop a M&E plan for your venture.

Clearly list all assumptions.

Identify short-term and long-term success metrics.

(Optional) identify specific methods to measure the metrics.

  INDICATOR DEFINITION

How is it calculated?

BASELINE

What is the current value?

TARGET

What is the target value?

DATA SOURCE

How will it be measured?

FREQUENCY

How often will it be measured?

RESPONSIBLE

Who will measure it?

REPORTING

Where will it be reported?

Goal Reduce  mortality rate of children across sub-Saharan Africa due to Sickle cell anemia Number of children under the age of five who have died due to sickle cell anemia in the past year divided by the number of live births, times 100 Currently, 50 to 90% of SCD-affected children are dying before the age of five in Sub-Saharan Africa (Grosse, S. D., Odame, I., Atrash, H. K., Amendah, D. D., Piel, F. B., & Williams, T. N. (2011). Sickle cell disease in Africa: a neglected cause of early childhood mortality. American journal of preventive medicine, 41(6 Suppl 4), S398-S405. doi: 10.1016/j.amepre.2011.013 200 test strips to be administered for diagnostic testing Hospital records  of deaths of children in sub-saharan Africa who were diagnosed of SCD and died under the age of five Annually CDC’s National Vital Statistics System (NVSS) captures all deaths from all causes across every state in the nation

 (Understanding Death Data.) 

Annual hospital records
Outcomes Rate of children being tested for Sickle cell anemia when born in sub-Saharan Africa Number of children being tested at birth divided by the number of live births, times 100 Percentage of early diagnosis of children with SCD using our test strip device  Distribution of numbers of individuals with sickle cell disease, with the trait, and with normal hemoglobin amongst 200 test stips administered.  Annually Our team in collaboration with global partners (World Hope International and other Sickle Cell Disease Organizations) Organization of records of those diagnosed with SCD and SCD trait to plan for treatment based on the use of our device
Outputs Raise awareness on the importance of diagnosing sickle cell anemia in order to reduce child mortality rates.  Number of children diagnosed with sickle cell anemia divided by the number of live births, times 100 

Number of children diagnosed with sickle cell anemia trait divided by the number of live births, times 100 

Percentage of children with SCD who need treatment and care to prevent mortality

Numbers of individuals with SCD relative to total population in need of treatment plan to prevent mortality

Annually

Trained medical professionals and guidance from groups

Community members more educated on importance of testing themselves and their children for SCD and how to receive treatment

Increased birth planning 

Raised Awareness of SCD prevalence in Sierra Leone communities

Continuous testing of our device based on reported records of diagnoses and success and reliability of our device

Collaborated on by: Kathleen Gifford, Anjali Shah, and Lauryn Jones

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SDG’s and Sierra Leone

1.What SDGs does your project target? What might be reasonable indicators for those SDGs?

  Our project – sickle cell diagnostics in Sierra Leone – targets SDG 3 (good health and well-being) SGD 9 (industry, innovation, and infrastructure), and SDG 10 (reduced inequalities). Parallels can be drawn from nearly all the sustainable development goals to our project, but these three seem to be the most crucial. The project’s goal is to design a low-cost diagnostic device for sickle cell disease. Our venture is starting in Sierra Leone, but we have hopes of expanding across Sub-Saharan Africa where nearly 45% of the population are carriers for the disease. This is a stark contrast from the international carrier rate of 2.1% (Plackett, 2021). Our device aims to relieve some of the burden that this disease puts on healthcare systems and lessen the substantial inequality in health services and outcomes caused by its prevalence. Another issue in Sub-Saharan Africa is lack of knowledge surrounding the disease. By making our device the norm for children at birth, we can eliminate the gap in suffering to treatment – promoting good health and well-being. Another very important aspect of this project is the device itself. 

 

2.Describe ten cultural factors that might impact your project at various phases in its lifecycle.

We have several project goals associated with our sickle cell anemia diagnostic test strip device, taking into account the cultural factors that might impact our project. 

  • One factor to consider is the stigma around sickle cell anemia in Sierra Leone, as there is a lack of understanding of the disease and its painful effects. Religious and cultural beliefs also play a role in the stigma behind the disease. Thus, our team should work to reduce the stigma of sickle cell anemia in order to lead to widespread use of the test strips in Sierra Leone. 
  • A second cultural factor is the lack of knowledge in the technology of our device and how to use it. Thus, we should work to make our test strip easy to use and highly reliable. 
  • A third factor to consider is that women in Sierra Leone on average give birth to six children. Our venture seeks to identify sickle cell disease as soon as possible in this country and if women are having this many children it will both become more important and more urgent that these diagnoses happen early in their lives.
  • A fourth factor is the lower financial status of the country as a whole. This low income causes the expense of our product to become a focus. It is very important to those that this project intends to affect, that the test strip is at the lowest cost to them as possible.
  • A fifth factor is that Sierra Leone has different social classes that have different amounts of wealth and access to care. It is imperative that this project can reach and have an impact on the extremes of their society. In other words, both the wealthy and poor should be able to have a similar ability to have an accurate and cheap sickle cell disease diagnosis.
  • A sixth factor is that Sierra Leone has the highest death rate and the second highest infant mortality rate in the world. This demonstrates further the need for a product that aims to have an indirect effect on these rates for the better.
  • A seventh factor is that medical facilities in Sierra Leone are underfunded and can reach only 35% of the population. This funding issue may be due to only 1% of the government’s annual budget going towards these facilities. The issue of medical care reach may make it difficult to immediately implement and make an impact with our project’s product.
  • An eighth factor to consider is the basic economy of Sierra Leone. Sierra Leone’s economy is dependent on mainly agriculture, including cash crops such as coffee, cocoa, tobacco, etc. In order to fully implement our test strip device, our team should gain an understanding of how Sierra Leone’s healthcare system plays a role in its economy. 
  • A ninth factor is the lack of access to proper sanitation and clean drinking water.  Our device involves blood samples, and with the implementation of our test strips, healthcare providers in Sierra Leone should be educated on sanitation protocols. 
  • A tenth factor to consider is how much the government allocates its money to healthcare. Less than 1 percent of annual government spending is allocated to healthcare. Thus, it is important for our project team to partner with other organizations related to sickle cell anemia in order to fully implement our device for widespread use. 

 

3.Give three examples of cultural practices that can be leveraged to address community / market problems.

  One cultural factor that could be leveraged when addressing the underdiagnosis of sickle cell anemia in Sierra Leone is the polite and manner-conscious tendencies of the area. Sierra Leoneans pay attention to courteous and eloquent greetings, as well as respecting elders. This could be leveraged to our advantage when trying to raise awareness about sickle cell disease. A community that is welcoming and willing to listen to what we have to say will be relatively easy to communicate and work with. Another example of a culture aspect that would be helpful is the importance of kinship networks in Sierra Leonean’s lives. In their culture it is important to assist one’s family throughout their lives. Our research is extremely relevant to keeping families alive and healthy since sickle cell anemia is taking the lives of children. Therefore we can leverage the importance of family and health to encourage those in Sierra Leone to help spread awareness about sickle cell anemia. Finally, the growing importance of education in Sierra Leone could be leveraged to our advantage. If we could potentially work with local schools to implement small lessons educating the local students of sickle cell and its symptoms, this could definitely help us quickly and effectively spread awareness to communities. Furthermore, hopefully through word of mouth students would be able to cause a chain reaction of knowledge spreading. 

Collaborated on by: Kathleen Gifford, Anjali Shah, and Lauryn Jones

References

Culture of Sierra Leone. Retrieved from https://www.everyculture.com/Sa-Th/Sierra-Leone.html

Placket, B. (2021). Why the middle east is a sickle-cell hotspot. Retrieved from https://www.nature.com/articles/d41586-021-02144-y

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GSIF Post 1

I enrolled in this course/applied for these fellowships because it seemed like it was an excellent way to combine a few things that I care about. My two main focuses over the past few years is to set myself up for a career that can use science to help others. These projects and the impact that they seek to have do exactly that. I am interested in medicine and biology which makes me a very good fit for the SicklED project that allows my background knowledge in these fields to have value. This project was also a good fit for me because I have a minor in Maternal and Child Population Health and SicklED is hoping to improve early diagnosis of sickle cell anemia and change the child mortality rate for the better. This along with the impact on a large scale in another county (and hopefully this becomes countries eventually)  made this an easy choice. Along with these reasons I am seeking a future in the medical field and feel that this experience and involvement with this project may help to set me apart in applications. However, this is dependent on our success, so the first and only focus now is to further the venture.

I think that as a student of biology and hopefully medicine I need a few things to be successful. The first of which is an understanding of how biological systems function. Much of this will be learned through coursework in my major. Another piece would be understanding how biology can be used to help people or improve their lives/health outcomes. I believe this course may help more in this area. Some of the topics that we plan to cover are ethics, culture, research, and health care systems. All of which can help me to use biology to help others more effectively than I could have before. Education in ethics allows for potentially less harm to be done while attempting to further or current or future ventures. This is a potential because ethics studies moral principles and frequently how actions can or cannot be justified. Learning more about research techniques could improve my effectiveness of doing work with biology by improving technique, efficiency, or quality or results. Finally, furthering my knowledge of health care systems, specifically in Sierra Leone, can give me a new perspective on how vastly different places view and treat healthcare. Additionally, my project SicklED is focused on this country and knowledge of it could help me become a better biology student for the very specific venture that I am currently involved in.

This issue of eyeglasses access is quite complex and would likely need many steps to reach a full solution. I think a few main areas that could really make a difference if addressed are diagnosis and distribution. I believe that diagnosis would be the more difficult of the two due to needing potentially a skilled/trained workforce to prescribe the correct glasses or a way to digitally assign people properly prescribed eyeglasses. In order to make a significant impact, the better strategy would be to design a system on a computer that can determine someone’s eyeglasses prescription accurately. An additional bonus would be to have it work effectively without an internet connection. With something like this in place it become possible to begin to remedy the unmet need for eyeglasses. This however creates an issue with distributing a tablet or similar device that would house the diagnosing program. The cost could be kept low by having a very large number of people using the same device and a large company like amazon working to distribute said tablet. Cost for tablets, especially those that are not name brand, has been declining recently and a tablet that could have this functionality is likely going to cost less than $100.00 a piece. This of course adds up as the scale of the project would increase. The issue of distributing the actual eyeglasses could be made cheaper by entire towns/villages completing the prescription program and ordering all the glasses together in a bulk order, rather than individually. A local hospital or similar community structure could house the tablet and function as the place where diagnosis, ordering, delivery, and distribution of eyeglasses could occur. This makes it less personal and structures like hospitals are frequently more accessible to the general population.

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