Stakeholder Identification & Engagement Strategy
To create successful solutions, it is crucial to understand the concerns and needs of the affected community. We developed a systematic approach to stakeholder engagement, classifying stakeholders by their influence and interest in our project to determine optimal outreach strategies.
Stakeholder Matrix
Low Interest
High Interest
Low Interest
High Interest
Select a quadrant
Click on any quadrant in the matrix to view detailed stakeholder information.
Interview Framework
We used a systematic four-step framework to ensure organized communication and effective implementation of stakeholder feedback.
Goal
Determine the goal of our communication. What information or feedback do we want to gain or give through this interaction?
Method of Communication
Determine the method through which we could best communicate with and continue to connect with stakeholders. What would be the most effective medium of communication?
Analysis of Suggestions
Unpack any recommendations made on our project. How does this stakeholder's unique perspective provide us with new avenues to develop our project?
Implementation
Apply changes to our project based on our analysis of suggestions. How might we incorporate what we have learned from this stakeholder's perspective into our project?
Email Outreach Template
In order to start our conversation with stakeholders, we relied on both previous connections and cold emailing. We ensured that each email was personalized to the receiver and included sufficient information about our project and goals to increase the likelihood of response.
Dear [Stakeholder name],
I hope this email finds you well!
My name is [insert your name], and I am part of team DNHS-SanDiego-CA for iGEM, the International Genetically Engineered Machine competition. This year, our project is centered around the ALS disease, specifically looking to minimize factors that contribute to stress granules under oxidative stress conditions in ALS patients.
Given your [role/leadership/advocacy, etc.] in the ALS community, we would be honored to connect with you and learn your perspective on ALS to gain insight into the [social] influence of the disease. Please let us know if you [or someone on their team] is available for a short meeting or call whenever is convenient for you. Your insights would be greatly appreciated and crucial to shaping our project to better serve the ALS community.
We look forward to hearing from you!
Sincerely,
[Your name]
DNHS-SanDiego-CA
Each stakeholder we interviewed provided a different perspective on our project, allowing us to adjust our approach and future directions to better align with our goal of creating a project that is useful in the real world.
Interview: Jeffrey Powers (Team Gleason)
Goal
Our main goal in communicating with Mr. Jeffrey Powers was to understand the current challenges faced by ALS patients and caregivers, as well as the most urgent gaps in care. We also aimed to learn how assistive technologies, nonprofit support, and collaboration with tech companies can improve the quality of life for people with ALS.
Method of Communication
We conducted an interview with him over Zoom after connecting through LinkedIn and corresponding through email. This allowed us to ask guided questions and gain open-ended responses. It was a conversational format which gave us detailed insights into Team Gleason's mission, current obstacles, and real stories from ALS patients and families.
Analysis of Suggestions
Mr. Powers emphasized several key points. The first key point was that there was a significant gap in education for providers, particularly speech-language pathologists, regarding ALS-specific needs. This is because speech-language pathologists are usually prepared for pediatrics and teaching younger students, and they lack education in helping adults with ALS. Secondly, he told us that patients currently prioritize assistive technologies that help them live independently, because effective therapeutics are still limited and there's not much they can do. His perspective highlighted the importance of centering our work on patient experiences and ensuring that our solution is adaptable to a variety of ALS patients, as each patient faces their journey in ALS progression differently.
Implementation
Based on these insights, we will ensure that our TDP-43 aptamer project stays closely connected to the real needs of ALS patients. He also highlighted the need for therapeutics—the reason that ALS patients are currently favoring assistive technologies is because there are no therapeutics that can help them currently, so our project's contribution to helping create ALS therapeutics will benefit them. Since Mr. Powers emphasized the importance of improving daily life, we will focus on how our therapeutic approach could ultimately translate into tangible benefits for patients, such as slowing functional decline. His input will help us visualize how our aptamer-based approach might complement assistive technologies by addressing disease progression at the molecular level. In addition, by keeping stakeholder communication ongoing, we can refine our project goals to ensure that our therapeutic direction remains relevant, impactful, and responsive to the lived experiences of the ALS community.
Key Interview Highlights
- Personal Connection: Mr. Powers was inspired by his uncle who had ALS when he was a kid. He was diagnosed in the early 2000s, when there were no cures/resources. After his diagnosis, he was basically set home to die, and there was no education and resources to help them. As a die-hard Saints fan, Steve Gleason was a hero and local legend, and when he was diagnosed with ALS, Mr. Powers joined Team Gleason and has been with them for almost 6 years.
- Funding Challenges: The funding for nonprofits has dropped, but Team Gleason has faced a 300% increase in requests in the past 5 years—from 150 requests in 2019 to 800 in the current year. It's getting harder and harder to address all requests.
- Provider Education Gap: Educating the providers is a big gap, especially speech-language pathologists. It's not a part of their curriculum to be educated on ALS specifically, and most of them aren't prepared to help adults; mainly pediatrics.
- Tech Collaborations: Team Gleason works with big tech companies like Microsoft and Google. Steve Gleason challenged Microsoft engineers to build him a powered wheelchair, and that's how they now can offer assisted wheelchairs to patients. They have a Microsoft executive on the Gleason Board.
- Sister Organization: Team Gleason has a sister organization called Answered ALS, which raises funds to do research and create therapeutics for ALS. They gather data about ALS from patient samples and work to make ALS open-source data accessible to any researcher.
- Advice for Students: The best thing to do is to talk with patients who have ALS and ask what their challenges are and how you can be most helpful. This can be done through surveys, patient interviews, etc. It's important to know the patient's view so that we can accurately help them in the areas where they need help.
Interview: Banu Hariharan - "Future of Lab Science"
Goal
To understand the "why" behind scientific exploration and gain insights into the future direction of scientific research, particularly regarding interdisciplinary collaboration and ethical responsibility.
Method of Communication
We conducted a virtual interview with the former researcher from Illumina after initial outreach through email. This format allowed for a conversational and reflective discussion, encouraging the interviewee to share personal experiences from their time in research and their insights on where scientific fields may be headed in the coming decades.
Analysis of Suggestions
The researcher emphasized that the "why" behind scientific exploration is rooted in curiosity, creativity, and societal impact. They noted that while science often focuses on data and results, it is equally important to consider the human motivations behind discovery—the desire to understand, to innovate, and to improve lives. They also reflected on how the future of science will increasingly depend on interdisciplinary collaboration, open data sharing, and ethical responsibility, as technology accelerates the pace of discovery.
Implementation
We applied these insights by integrating a stronger focus on the human element of science within our project. Rather than viewing our work purely through a technical lens, we began emphasizing the purpose and impact behind our research—why it matters, and how it contributes to the future of scientific progress. The discussion also encouraged us to consider the ethical and social dimensions of our work, ensuring that our scientific goals align with long-term benefits for society.
General Public Engagement & Community Education
Science requires funding and buy-in from the general public to achieve its purposes and create changes in society. We engaged our community through strategic social media campaigns and direct outreach at public events.
ALS Walk Survey
At the ALS walk hosted by ALS San Diego, we conducted surveys to understand community knowledge about ALS and synthetic biology. These surveys helped us understand just how important it was to engage the general public about synthetic biology and ALS.
Key Findings from ALS Walk Surveys
From the surveys we conducted at the ALS Walk, we learned that many participants were unfamiliar with ALS beyond its name, the well-known Ice Bucket Challenge, and loved ones with the condition. Specifically, several people admitted they had not heard much about the scientific efforts to better understand or treat the disease, and even fewer knew about the role synthetic biology could play in developing new solutions and therapeutics.
After we explained our project idea, most respondents expressed that they found it very promising and impactful. One participant we talked to said they appreciated the idea of using developing science to address a disease that currently has limited treatment options to slow progression. A common topic that came up while discussing our project was expenses and accessibility concerns for patients. These interactions helped us consider the importance of ensuring future applications of our project remain affordable.
Collegiate Mini Jamboree
We attended the Collegiate National Mini Jamboree, which included a High School division. While competing in the high school division, we watched top iGEM teams such as Lambert and KhanLab present their project to the rest of the division. From this, we learned valuable presentation skills, such as vital team synergy and impressive scientific diction. In the previous team discussions following the jamboree, we made necessary changes to our presentation to incorporate these novel capabilities.
During our specific presentation, we were able to successfully present our slideshow to the judges and gain insight from their feedback. The judges specifically requested additional information about aspects of our project, such as our Monte Carlo system and the efficacy of our lab work. With thorough answers, we were able to clear the judges' doubts, but discussions did arise during team meetings about how to appropriately acknowledge them. Therefore, another improvement that we worked on was communicating our project to the judges.
STEM Fair
We participated in our community's local STEM fair, playing an integral role in educating children about the basics of DNA. We set up a booth with a presentation on synthetic biology and its interesting applications, such as genetically modified organisms. After our presentation, we encouraged kids to further explore the properties of DNA by providing materials and guiding them through a DNA bracelet-making process, using beads to replicate the process of matching corresponding nucleotides. We received feedback from parents that this activity allowed the children to further their knowledge in the classroom by giving them a visualization of how different nucleotides come together to make unique bracelets, each in a double helix shape.
The STEM fair also allowed us to increase our community reach by better spreading knowledge of iGEM, advertising our library talks, and getting the community more involved in our research. We used this as an opportunity to gain a variety of feedback on our survey from different demographics, allowing us to understand the true impact of neurodegenerative diseases on people in our community. Overall, the STEM fair was a great way to spread and gain knowledge of the impact of our project as well as get children in our community interested in STEM at a young age.
Community Member Symposium
We held a symposium for adults in our community to inform individuals well versed in a variety of subjects about the impact our research has on a variety of people. For many participating members, this was the first time they'd heard about ALS and new methods of treatment that are possible through ASOs and aptamers. We guided them through the intricacies of our research, scicomm, and software process, informing them on how our project combines a variety of fields to achieve a final goal.
The symposium received impressive attendance and provided us with an opportunity to showcase and detail our work to our community. The community was proud of the work we are doing to impact those around us, and the feedback we received from the symposium was integral to understanding our approach to providing a clear and concise research process to communicate our findings to those who are not experts in the field. We learned about how our project might be received by members of the community, who will ultimately be the people taking the treatment.
Interactive Application
This year, we created an interactive application to help spread awareness of ALS. This interactive application included a variety of pages, such as videos, quizzes, podcasts, and an information page about ALS.
Stories of Our Community Podcast
Our team created our very own podcast called, "Stories of Our Community," where we discussed our interviews with different ALS advocates, and we aimed to spread awareness of people's experiences with ALS and how the public can participate in their initiatives. The podcast is available on both our application and on Spotify.
ALS Information & Resources
After conducting extensive surveys and interviews, we found out that although many people were aware of ALS as a concept, they did not know about the specifics. Because of this, our application provides an information page, containing a wide variety of facts and ALS resources available for the users.
Interactive Quiz
We also provided a quiz to test people's improvement from the beginning to what they gained from our application, as it covers the main ideas of ALS. They will be able to see their score, what out of the 10 questions that they got wrong and will also be able to retake the quiz as many times as they want to keep improving.
Symptom Tracker
Our application also provides a notes page for the users which acts as a symptom tracker to help them keep track of what they are feeling every day, if they are affected by ALS, to provide a better way to manage their stress.
Each component of our interactive application plays an essential role in making ALS awareness more accessible, engaging, and meaningful for the public. The videos and podcasts enable people to connect emotionally with real stories, helping them understand ALS beyond statistical information. The information page ensures that people have access to reliable, accurate resources that they can always return to and use to delve deeper into ALS research. Additionally, the quizzes encourage active participation, reinforcing what people learn and ensuring that they are able to take away more information about ALS than they began with. Together, these applications not only spread awareness but also promote a deeper understanding and encourage individuals to take action in supporting ALS initiatives.
Interschool Collaboration Symposium
Our team, along with two other local iGEM teams (Westview and Canyon Crest Academy), came together to present our projects at a symposium, sharing and learning about each other's research approaches.
Three-School Knowledge Exchange
Del Norte High School - Granulyze Project
Our team shared research on antisense oligonucleotides (ASOs) and their potential role in regulating stress granule dynamics, highlighting the therapeutic promise for neurodegenerative diseases like ALS.
Safety and Ethics Discussion
We discussed the safety and ethics of our research, particularly how synthetic biology tools can contribute to developing new therapeutic strategies, and the responsibilities that come with this kind of research.
Key Ethical Considerations
- Accessibility: Who would benefit from ASO-based therapies?
- Equity: How do we ensure advancements don't widen healthcare disparities?
- Social Impact: Effects on patients, families, and healthcare systems
- Responsibility: Ethical obligations in synthetic biology research
This expanded our view of "safety" beyond just the laboratory to include social, ethical, and human-centered considerations. Through this symposium, we fostered communication and collaboration among participants, building a foundation for continued partnerships in addressing pressing problems in synthetic biology.