May Mallahzadeh ⏤ 2024
May Mallahzadeh ⏤ 2024
Scoping
This page details the research exploration that led to the formulation of the questions this study aims to address.
Scoping
This page details the research exploration that led to the formulation of the questions this study aims to address.
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Share early, share often. The more we communicate about our hardships, the faster we get a workable solution.
Candido & Inez Jacuzzi, caregivers
Share early, share often. The more we communicate about our hardships, the faster we get a workable solution.
Candido & Inez Jacuzzi, caregivers
Intersection of healthcare and design research
The intersection of design research and healthcare is a vast and intriguing field with much to explore. To narrow down the topic and breakdown the map below, I turned to social media for inspiration and guidance. What I discovered was fascinating.
Intersection of healthcare and design research
The intersection of design research and healthcare is a vast and intriguing field with much to explore. To narrow down the topic and breakdown the map below, I turned to social media for inspiration and guidance. What I discovered was fascinating.
Observations on social media
Observations on social media
Did you know that every day, thousands of people share their health journeys, struggles, complaints, needs, and even solutions on social media platforms?
Why?
There are many reasons, including being lost and needing help navigating the healthcare maze, wanting to see they are not alone, sharing their solutions to help others, and finding answers.
Why?
There are many reasons, including being lost and needing help navigating the healthcare maze, wanting to see they are not alone, sharing their solutions to help others, and finding answers.
What happens to the data they share?
Often, nothing happens, or people who recognize the value of this data use it for their studies and take people’s ideas.
What happens to the data they share?
Often, nothing happens, or people who recognize the value of this data use it for their studies and take people’s ideas.
So why doesn’t mainstream healthcare take advantage and start seeing the patterns of problems being shared?
The healthcare system is very complicated and has different silos that don't communicate well with each other. Additionally, the value of lived experiences is not yet widely recognized as valuable within the system.
So why doesn’t mainstream healthcare take advantage and start seeing the patterns of problems being shared?
The healthcare system is very complicated and has different silos that don't communicate well with each other. Additionally, the value of lived experiences is not yet widely recognized as valuable within the system.
If the healthcare system could tap into these ideas, it has the potential to significantly enhance the experiences of both patients and providers.
Patients and providers are full of innovative ideas.
They want to collaborate and develop solutions together.
With the right environment and resources, they are eager to bring these ideas to life.
If the healthcare system could tap into these ideas, it has the potential to significantly enhance the experiences of both patients and providers.
Patients and providers are full of innovative ideas.
They want to collaborate and develop solutions together.
With the right environment and resources, they are eager to bring these ideas to life.
Assumptions
Assumptions
Informal secondary and primary research conducted through classwork to evaluate assumptions resulted in the following findings and key questions:
Informal secondary and primary research conducted through classwork to evaluate assumptions resulted in the following findings and key questions:
Lesson Learned
Lesson Learned
The healthcare system is not yet equipped to support innovation or participatory design, as it operates within many silos, and people's needs, concerns, and voices are often overlooked.
People often want to be heard but don't always wish to share ideas or innovations.
Patients and providers may not necessarily want to collaborate and work together directly.
Collaboration
Collaboration
Participation level
Participation level
Healthcare silos
Healthcare silos
The healthcare system is not yet equipped to support innovation or participatory design, as it operates within many silos, and people's needs, concerns, and voices are often overlooked.
People often want to be heard but don't always wish to share ideas or innovations.
Active patients are currently engaging in their healthcare journeys and decisions in three ways, mostly invisible to mainstream healthcare.
Active patients are currently engaging in their healthcare journeys and decisions in three ways, mostly invisible to mainstream healthcare.
Patient Engagement on Social Media
"Visible to healthcare" and "Invisible to healthcare" refer to whether certain patient experiences, needs, and feedback are recognized and acknowledged by the healthcare system.
Patient Engagement on Social Media
"Visible to healthcare" and "Invisible to healthcare" refer to whether certain patient experiences, needs, and feedback are recognized and acknowledged by the healthcare system.
Map key
Although social media allows people to connect and share their experiences and solutions, some patients go further by creating new platforms and spaces to address unmet needs that social media doesn't fulfill.
Although social media allows people to connect and share their experiences and solutions, some patients go further by creating new platforms and spaces to address unmet needs that social media doesn't fulfill.
Research Questions
How can the healthcare system effectively integrate the voices of individuals with lived experiences?
How can the silos among researchers, patients, and providers be disassembled to foster collaboration and inform healthcare decisions?
What are the perceptions and expectations of individuals with lived experiences regarding participation, engagement, and empowerment in healthcare delivery change?
Research Questions
How can the healthcare system effectively integrate the voices of individuals with lived experiences?
How can the silos among researchers, patients, and providers be disassembled to foster collaboration and inform healthcare decisions?
What are the perceptions and expectations of individuals with lived experiences regarding participation, engagement, and empowerment in healthcare delivery change?
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Limitations
This project is an exploratory MFA design research study with a time constraint that aims to highlight and address the issues within the three main silos of the healthcare system: patients, researchers, and providers. Access to these stakeholders is very challenging, and the complexity of the healthcare system cannot be fully understood within a year-long study. Due to these limitations, the focus of this study has been narrowed down to two key conditions: Long Covid and Diabetes.
Limitations
This project is an exploratory MFA design research study with a time constraint that aims to highlight and address the issues within the three main silos of the healthcare system: patients, researchers, and providers. Access to these stakeholders is very challenging, and the complexity of the healthcare system cannot be fully understood within a year-long study. Due to these limitations, the focus of this study has been narrowed down to two key conditions: Long Covid and Diabetes.
Participants
This study will focus on three key stakeholders: patients, providers, and innovators. Patients and providers, with their lived experiences, will be prioritized to ensure their voices are heard. Innovators, on the other hand, are professionals working in various roles within the healthcare industry, such as designers, inventors, and facilitators. These individuals actively listen to patients and providers as part of their job responsibilities. By exploring these perspectives, I aim to uncover needs, challenges, and opportunities to enhance health experiences, creating a holistic approach to finding effective solutions.
Participants
This study will focus on three key stakeholders: patients, providers, and innovators. Patients and providers, with their lived experiences, will be prioritized to ensure their voices are heard. Innovators, on the other hand, are professionals working in various roles within the healthcare industry, such as designers, inventors, and facilitators. These individuals actively listen to patients and providers as part of their job responsibilities. By exploring these perspectives, I aim to uncover needs, challenges, and opportunities to enhance health experiences, creating a holistic approach to finding effective solutions.
Why Long Covid?
People living with Long Covid identified, measured, and named the condition when they were not believed and unheard. They united, conducted their own research, and documented their experiences, ultimately drawing the attention of clinicians and researchers. This showcases the immense power and untapped potential of patient communities. Due to recruitment challenges and the value of comparing benefits across different communities, diabetes will be my second condition of focus.
Why Long Covid?
People living with Long Covid identified, measured, and named the condition when they were not believed and unheard. They united, conducted their own research, and documented their experiences, ultimately drawing the attention of clinicians and researchers. This showcases the immense power and untapped potential of patient communities. Due to recruitment challenges and the value of comparing benefits across different communities, diabetes will be my second condition of focus.
Post-COVID
Post-COVID
Post-acute COVID
Post-acute COVID
Chronic COVID
Chronic COVID
Long COVID
Long COVID
Long-haul COVID
Long-haul COVID
Why Diabetes?
Additionally, diabetes was selected because reaching out to and involving people living with diabetes is anticipated to be easier due to the larger population and the more established network of providers working on this condition. People with diabetes have a long history of coming together to design solutions and play an active role in their healthcare journey. They participate at all levels of awareness, impact, and innovation.
Why Diabetes?
Additionally, diabetes was selected because reaching out to and involving people living with diabetes is anticipated to be easier due to the larger population and the more established network of providers working on this condition. People with diabetes have a long history of coming together to design solutions and play an active role in their healthcare journey. They participate at all levels of awareness, impact, and innovation.
Type 2 Diabetes
Type 2 Diabetes
Type 1 Diabetes
Type 1 Diabetes