HUMAN PRACTICES

Integrated Human Practices

Indonesia experienced such a horrific Diphtheria Outbreak at the end of 2017. Before the incident, the anti-vaccine and fake vaccine campaign began to be loudly echoed by certain groups during 2016 to mid-2017, causing a decrease in vaccine coverage and herd immunity in Indonesia. By the end of 2017, 20 Indonesian provinces simultaneously reported diphtheria cases in their respective regions. Based on various news sources, there were 600 diphtheria cases that occurred, and 32 of them were fatal. This caused a massive stir in the community.

The main obstacle of diagnosing diphtheria is time-consuming diagnostic tool. The medium culture took almost 5 days to show result. Within a narrow timeframe, patients experiencing vague clinical symptoms were considered infected, and each of them was given immediate Diphtheria Antitoxin (DAT) administration and treated in isolated environment. Although the procedure aimed to enhance patient’s safety, it led to a huge number of over-diagnosed cases, shortage of DATs in several places, and limited isolation rooms in regional hospitals. The chaos also contributed to rising medical expenses for no apparent use.

We, iGEM UI team, realized that there is a need for a rapid diagnosis method that can detect diphtheria quickly and accurately. Learning from previous mistakes, we continuously seek for a rapid and cost-effective diagnostic tool to enhance accuracy in diagnosing diphtheria. In the long run, we also hope to contribute in reducing national medical expenses. With this vision, our project will inevitably provide a practical diphtheria-specific diagnostic tool as it is accessible, affordable, and effective. Furthermore, we strive to achieve a bigger dream by establishing this diagnostic modality as a primary diagnostic tool for diphtheria detection worldwide.

‘Listen and Implement’ is our basic Human Practice motto. Therefore, we strived to integrate our lab work with feedback from experts, stakeholders, researchers, government, and society along the way, so that our project could be beneficial for everyone. With this approach, we make sure that our main project has evolved based on our Human Practices work.

Consulting with the Expert

dr. Robert Sinto, SpPD, K-PTI
Division of Tropical and Infectious Diseases, Department of Internal Medicine, Faculty of Medicine Universitas Indonesia, Cipto Mangunkusumo National Hospital, Jakarta, Indonesia

To earn a strong background and comprehensive understanding about our project, we consulted with dr. Robert Sinto, SpPD, K-PTI about the diphtheria outbreak in 2017. dr. Robert comes from Division of Tropical and Infectious Diseases, Department of Internal Medicine, Faculty of Medicine Universitas Indonesia - Cipto Mangunkusumo National Hospital, Indonesia.

dr. Robert provided us a holistic view of diphtheria outbreak management in Indonesia at that time. We got a lot of information about conventional diagnosis steps taken at national referral hospitals in Indonesia. According to him, the mechanism of conventional diphtheria diagnosis using throat swab was still not effective enough. Due to waiting period for bacterial culture, many suspected patients got injected with Diphtheria Antitoxin (DAT) without being clinically diagnosed. This led to over-diagnosed and scarcity of DAT in several places in Indonesia.

Therefore, we found the urgency of inventing a fast and reliable diphtheria diagnostic tool.

Reaching the Frontliners

Midwife Ria Magdalena D, Am.Keb - Frontline Health Worker

Even though more than half of our team is filled with medical school students, none of us has ever directly experienced or diagnosed with Diphtheria. Therefore, we have come down from the lab to meet people who have been fighting diphtheria at the forefront.

Midwife Ria, health worker at the primary health care center Sukmajaya, was pregnant when the outbreak occurred. But the enthusiasm of her in dealing with diphtheria outbreak deserves two thumbs up. From her, we got some keypoints:
- In clinical settings, if there is a person suspected of having diphtheria, the people around him must also be diagnosed. Diagnosing a large group of people requires a lot of money and human resources. Therefore, the cheap and efficient diagnostic tool that is being worked on by this team can be a solution to overcome the problem. It is needed by the health care workers.
- There are a lot of aspects regarding a disease, including: immune system, food, lifestyle, and stress management.
- Education for the closest people of the victim is important as they do not realize that they have a higher risk of being infected by Diphtheria, therefore is needed to be tested, too.
- Some people do not have booster for their vaccine.

Lulu Chotim Amsari - Faculty of Medicine, University of North Sumatra, Medan, Indonesia

Lulu was one of the people involved in 2019 diphtheria outbreak in North Sumatera, Indonesia. She is willing to share stories about the situation when the outbreak occurred. Screening was done thoroughly and immediately after two fatal cases. In this outbreak, the handling was done quickly so that more severe cases can be avoided. However, the problem that arises from waiting for a definitive diagnosis from bacterial culture is still a scourge.
drg. Anugerah - Frontline Health Worker at Kalimulya Primary Health Care Center

We talked to her as an approach to gain insight from potential user regarding our product. From her, we obtain several information:
- The best public education to deliver is about the importance of vaccination, because several families (even in her area) do not want their kids to be vaccinated.
- Our product concept is good, however, we need to assess our product based on Peraturan Menteri Kesehatan RI (Regulation of The Minister of Health of The Republic of Indonesia) before distributing to primary health care center. Our product has to be validated and tested, especially because we use bacteria
- Diphtheria rapid diagnostic tools are not only needed when an outbreak occurs, but also in daily clinical settings.
- Make sure the diagnostic tool can be easily used by all health workers, not only in large hospitals, but also in remote locations.
After talking to her, we analyse our product based on Minister of Health Regulation Number 62 of 2017 on Marketing Authorization for Medical Devices, In Vitro Diagnostic Medical Devices and Supplies (Peraturan Menteri Kesehatan RI No. 62 Tahun 2017 tentang Izin Edar Alat Kesehatan, Alat Kesehatan Diagnostik In Vitro, dan Perbekalan Kesehatan Rumah Tangga)

We learned that we have to ensure that our product (Article 6):
- Has good quality and production process
- Safe and clinically useful (proven by clinical trials)
- Not using prohibited material
We also assess our product using Pedoman Penanganan Diagnostik In Vitro dalam Rangka Menjamin Mutu, a guideline from our Ministry of Health to ensure the quality of in vitro diagnostic tools. There are three main aspects that we need to consider:
- Standard of Procedure (SOP)
  - Clear SOP and trained health care workers are needed
  - Health workers working >3 years in Primary Health Care Center are classified as compatible
- Storage
  - Product should be kept in deep freezer (<0ºC)
  - Cover with a plastic bag to prevent dew
  - Temperature control should be checked three times a day
- Transportation
As we want our product to be accessible for everyone in Indonesia, we have to ensure that the primary health care center has compatible health workers, storage, and transportation. drg. Anugerah said that her primary health care center has all of that. But we need to make sure that our product is clinically proven and has clear SOP.

Recognizing the Bacteria's Nature

dr. T. Mirawati Sudiro, PhD and dr. Dimas Seto Prasetyo, SpMK
Department of Clinical Microbiology, Faculty of Medicine, Universitas Indonesia

dr. Mira and dr. Dimas are staffs of Microbiology Department, Faculty of Medicine Universitas Indonesia. From them, we gained knowledge about Corynebacterium diphtheria and its natural behavior.

After we explained our project overview, they gave some considerations regarding this project.

The modified E. coli that is used as a diagnostic tool is a living organism. We need to consider the viability and mutation rate of the bacteria once it’s commercialized. In this case, we planned to check the mutation rate of the modified E. coli regularly after several times of use.
Also make sure that the bacteria are not pathogenic.
The storage aspect of the future product should also be considered. Bacteria need certain temperature and environment to keep viable.
If the tool is commercialized, consider the disposal aspect.

Involving the Government

dr. Yana Yanti Suleman, SH
Former Chief of Disease Control and Environmental Sanitation in Gorontalo Health Office, Indonesia

dr. Yana is a former chief of Disease Control and Environmental Sanitation in Gorontalo Health Office, Indonesia. She gave us a view regarding financing and government responsibility in diphtheria case. From her, we knew that diphtheria patients’ treatment is not covered by Indonesian Health Insurance System (BPJS). However, funding for the treatment of diphtheria patients is the responsibility of their own respective local governments. Inexpensive and effective diagnostic tools can certainly reduce the financial burden borne by the local government.

Polishing the Final Work

dr. Ninik Sukartini, SpPK(K) - Department of Clinical Pathology, Faculty of Medicine, Universitas Indonesia

dr. Ninik is a clinical pathologist from Faculty of Medicine Universitas Indonesia. We consulted the specificity and sensitivity aspects of our diagnostic tools with her. Sensitivity is an important aspect in making a diagnostic tool. We also have to make sure that our tool detects only diphtheria toxin to prevent false positive results. With a careful consideration of sensitivity and specificity of the tool, the overtreated or misdiagnosed case can be prevented.

Dr. Fadhilah, M. Si - Department of Medical Chemistry, Faculty of Medicine, Universitas Indonesia

Dr. Fadhilah, M. Si is a chemist in Faculty of Medicine Universitas Indonesia. She helped us docking our protein model. Docking is very essential for our project. Before consulting to her, we only utilized webserver analysis, which from her point of view, is not quite accurate. From her, we knew that our docking was different from our ligand (Dipthox). With her assistance and help, we finally used a tool called Molecular Operating Environment (MOE) to give analysis for our docking, even the molecular dynamic of our protein. This tool helped us shape our currently used protein model.

Brainstorming the Big Picture of the Project

Mr. Rahmat Azhari Kemal, MSi - Mentor of iGEM UI_Indonesia 2019

Mr. Rahmat Kemal is our assigned iGEM mentor. At the beginning of our Human Practice work, we discussed the main idea and framework of our project with him. Through his advice, we were able to examine what problems arose from our project, how our project affected the society, and how the community contributed to our project. We also constantly shape and perfect our ideas in human practice and public engagement activities based on our discussions with him.

Prof. Ari Fahrial Syam, SpPD-KGEH, MMB, FINASIM, FACP - Dean of Faculty of Medicine, Universitas Indonesia

Prof. Ari has mutual spirit with iGEM UI_Indonesia 2019 team, as both of us want to reduce the dissemination of hoax in our community. He is the founder of “Apa Kata Dokter” (available on PlayStore), which an application which includes confirmations regarding medical misconception. From him, we learned that we must stand up against hoax, especially medical-related hoax. General population is susceptible to unclear source naming itself to be able to make one healthy, but unfortunately, a lot of them are hoax. Therefore, it is our responsibility to clear the misconceptions. From the talk, we shape our public engagement program to obtain hoax from people around us and confirm it on our podcast (releasing soon).

Aulia Reski and Dwiantari Satyapertiwi - iGEMers at Metionin 2019 (iGEM Indonesia Meetup 2019)
At Metionin, a meet up of Indonesian IGEMers held by ITB, we met our seniors, Aulia Reski and Dwiantari Satyapertiwi. After presenting our project, they gave us insights that has huge impact on our project:
- We should collaborate with healthcare professionals in the government sector and locals (we have done it by interviewing dr. Robert, dr. Yana, drg. Anugerah, and Midwife Ria)
- Use the legit coordinate to present the location of the project
- Explain more about the global data to explain something worldwide and make it integrated with our local data and problems which we want to tackle
- The presentation must include the project output and future implementation idea
- We changed our project title to How I Met Diptho to maintain our novelty and uniqueness

Education and Public Engagement

Wiki Analysis

To involve the public in our wiki, we made a survey regarding the quality of our wiki, therefore we know what the public expect. After consulting with Altariqh Dwiatmaja, an experienced UI/UX designer, he suggested us to make a user testing method targeting people that use IGEM Wiki interface. So, we asked iGEM ITB_Indonesia 2019 and IGEM Sriwijaya 2019 to give our wiki some feedback. The results are:

From the result of each question above, we made a conclusion that our wiki gave a good impression to the visitors. From question number 2 and number 3, we found out that overall, our content is quite understandable to other fellow iGEM teams. However, we feel that we still have to improve our wiki content and how the content is delivered to the visitors so that it can be easily understood. In this case, improving the wiki design could be a way to increase visitor comprehension about the content.

Some suggestions we obtain are to make our wiki mobile friendly and use videos/GIF to make our content more understandable. To make improvement from last year’s wiki, the suggestions are to remove or fill empty sections and increase our picture resolution.

How Green is Our Lab: An Assessment by Nature

We asked our wet lab division to assess the laboratory-sustainability in PRVKP Lab. The tools we use was a quiz provided by Kathryn Ramirez-Aguilar which was published on Nature website. The result for our lab is:

Podcasting

Mr. Syaqiq, one of our teachers in the Faculty of Public Health, Universitas Indonesia told us that we need to take our public engagement program to the next level, using new trend in the community, especially targeting the millennials. He suggested us to try making a podcast.

Our team got the chance to join the podcast training titled “Create a Podcast for Beginner” which given by MozBelajar (Mozilla Community Space). Therefore, we could extend and enhance our method of intervention, especially for Indonesian people who like to hear some audio information while they did another thing at the same time. That condition is proven by the statistic data that shown 80,82% of people in Indonesia is ever heard the podcast in the past six months (Rane, 2018)

After the podcast training, we know the steps, tips, and tricks to make good podcast. The summary of the meeting is available on(link). We use Buzzsprout for our podcast hosting and Spotify as our podcast directory. We named our podcast “Diphtalk” and it is available on Spotify. We use Bahasa as our main targets are Indonesian, but we will translate the podcast into English so we could accommodate listeners worldwide.

We successfully crafted one episode talking about Diphtheria in Depok. On the next episode, we will talk with:

Ummu Salamah, the leader of anti-vaxx movement, to discuss about their perspective regarding the usage of vaccine (to be aired on 26th of October);
dr. Yulia, on “Diphtheria on the Eyes of Microbiologist”, to discuss about diphtheria in both clinical and lab settings (to be aired on 27th of October)
The introduction of igem and synthetic biology with Iqbal, also answering questions from previous questionnaire we gave to freshmen.

Social Media (Instagram)

With 150 million users of Instagram in Indonesia, we believe it could be one of our intervention segment to raise the people’s awareness and enhance their knowledge about diphtheria (Pratnyawan, 2019). Therefore, we crafted some journeys related to overviews of our iGEM project which include:

Vaccination of the pre-clinic medical students;
Gamification, in form of Bingo about the Risk-factors of diphtheria;
Transfer of knowledge between iGEM Universitas Indonesia and Imperial College London;
Direct-intervention to Indonesia care for cancer kids foundation.

Science-Exhibition

We will exhibit our diagnostic tool research project titled “How I Met Diptho” in Indonesia Science Expo 2019 as the representative of iGEM UI_Indonesia 2019 together with Universitas Indonesia, which will be held on October 26^th, 2019. This event is considered as an international event and will be the threshold for another technology development invention which will improve the feasibility and quality of the current Diphtheria screening tools. Hopefully it could further prevent another Diphtheria outbreak epidemic in Indonesia and also in the world.

We will present the results of this exhibition during the Giant Jamboree.

Pilot Project for Testing Intervention Tools

Together with the social services group from Faculty of Medicine Universitas Indonesia, we tested our tools of intervention to match it up with the public knowledge, so it can be useful and effective for educating the people. The pilot project used Hoax-pamphlet and Posters as our tools and conducted in Cipayanggu Village, Harjawana Sub-district, Lebak District, Banten Province.

Indonesia Care for Cancer Kids Foundation Intervention

Together with Buddhist Religion Group from Universitas Indonesia, we created an intervention event to the cancer children which recognized vulnerable to diseases including Diphtheria. We crafted rundown with Project Planning Matrix as our base for intervention which will include bio-synthetic storybook for children, kahoot! games for teenagers and powerpoint presentations for adults. Those events will focus on three things which are cancer-related issues, the importance of vaccination and how to tackle the hoax in general. Moreover, we also use the intervention tools that already tested in the pilot project and gave it to participants.

Dissemination at Pre-Clinic Medical Student Vaccination

We gain insights about hoaxes which pre-clinic medical students in Universitas Indonesia have heard while capturing moments about them having a Diphtheria vaccination booster. It was required to get booster before getting into the clinical phase because of the high prevalence of infectious diseases. Our team members got the booster at this event, too. We asked the students to post the pictures on their instagram accounts to promote our activity! We also had a talk with dr. Elsa Hufaidah from Rumah Vaksin which supply the boosters for the students. She said that Rumah Vaksin was made as a response for disseminating antivaxxers group in Indonesia. They want to promote and educate the public that vaccine is important and halal.

High-risk Population Intervention

After getting permission from the village leader, we will do the door to door intervention which proven effective to increase the acceptance of information that we provide. We will do the activity at Abdijaya, Depok, West Java (6.3929° S, 106.8503° E) (on going activity, 27th of October)

Meetups: IGEM ITB and Imperial College London

We had the chance to present our project and exchange insights from IGEM ITB and Imperial College London. It was refreshing to share our stories with common IGEM team!

Next Generation: Engaging Freshmen to Synthetic Biology

Synthetic biology is a topic that is still less commonly understood by the society. To find out how 'strange' synthetic biology is according to nonexperts’ point of view, we conducted a survey involving freshmen of Faculty of Medicine, Universitas Indonesia 2019. Before collecting their opinion about synthetic biology, we first carried out a presentation about what is iGEM in general and what project we are working for this year’s iGEM. Most of them looked enthusiastic when listening to our presentation.

Below are the results of our survey to the freshmen about synthetic biology (we got 19 respondents in total):

According to your opinion, what is synthetic biology? How closely related is it to the medical world?
Most of them answered the definition of synthetic biology correctly. They also argue that synthetic biology has a very close relationship with modern medicine, especially in therapeutic aspects. Some of them also mentioned the use of synthetic biology in medicine such as stem cells and genetic engineering
How well do you understand about synthetic biology? (1 stands for don’t understand at all, 4 stands for very understand)
From your point of view, does a medical doctor need a good understanding of synthetic biology?
(1 stands for not at all, 4 stands for urgently need)
Which of the following branches of synthetic biology have you studied in High School?
Are you interested in synthetic biology? (Ya = yes, Tidak = no)

For those who choose no, we asked them about their reasons. Most of them answered that they have never been exposed to synthetic biology at all, while others said that they didn’t understand the importance of synthetic biology yet.
Is our presentation about iGEM enough to make you interested in getting to know further about synthetic biology?
(1 stands for not at all, 4 stands for very interested)

From the results above, we can conclude that the freshmen’s interest in synthetic biology is actually quite high. Most of them have been able to identify the uses of synthetic biology in medicine, and they also understand that the advancement of medical technology which is assisted by synthetic biology also helps improve the quality of public health. Some people who felt less interested argue that they actually have the desire to find out more, but unfortunately, they lack the opportunity to be exposed to such topic.

Therefore, as an iGEM team members, we feel the strong urge to spread the knowledge about synthetic biology to others, hoping that the more people understand about synthetic biology, the more advanced human civilization will be.

Human Practice Catalogue

References

Rane. 2018. Survey Podcast 2018 di Indonesia. Accessed online at 21st of October 2019 and available at https://suarane.org/survey-podcast-2018-di-indonesia/
Pratnyawan, Agung. 2019. Pengguna Instagram dan Facebook Terbesar ke-4 di Dunia. Accessed online at 21st of October 2019 and available at https://www.suara.com/tekno/2019/06/19/133252/pengguna-instagram-dan-facebook-indonesia-terbesar-ke-4-di-dunia
Peraturan Menteri Kesehatan RI NOMOR 62 TAHUN 2017. Izin edar alat kesehatan, alat kesehatan diagnostik in vitro dan perbekalan kesehatan rumah tangga.
Ramirez-Aguilar, K. (2019). Quiz: how green is your lab?. [online] Nature.com. Available at https://www.nature.com/articles/d41586-019-02830-y [Accessed 19 Oct. 2019]

Team:UI Indonesia/Human Practices