May Mallahzadeh ⏤ 2024
May Mallahzadeh ⏤ 2024
Research stages
On this page you can find details on participant demographics, research methods, and examples of the data collected.
Research stages
On this page you can find details on participant demographics, research methods, and examples of the data collected.
I am the coordinator, I am the advocate, I am the insurance specialist - and I am the patient.
Emily, Living with Long Covid
I am the coordinator, I am the advocate, I am the insurance specialist - and I am the patient.
Emily, Living with Long Covid
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Stages
This study was conducted in two stages.
Stages
This study was conducted in two stages.
Stage 1
Healthcare experiences interviews
Exploring current levels of participation and engagement among patients and providers, and identifying the need for collaboration between patients, providers, and researchers.
Hypothesis generation
Hypothesis generation
Compensation
Compensation
Responsiveness to patients
Accessible engagement
Accessible engagement
Stage 1
Stage 2
Stage 2
Provotype Feedback Surveys
Gathering collective insights on the proposed provocative solutions to the research questions.
Provotype Feedback Surveys
Gathering collective insights on the proposed provocative solutions to the research questions.
Healthcare experiences interviews
Exploring current levels of participation and engagement among patients and providers, and identifying the need for collaboration between patients, providers, and researchers.
Stage 1
Series of interviews with patients, providers, and researchers
Stage 1
Series of interviews with patients, providers, and researchers
Healthcare Experiences Interviews
Research Goal
Understand the types and extent of participation and collaboration among healthcare providers, patients, and researchers.
Research Tools
Semi structured interactive interviews, journey map, care map, scorecard activity.
This stage involved interactive interviews with 22 individuals, including people living with long covid or diabetes, providers caring for these conditions, and researchers/innovators in the healthcare space. Participants completed a care map, discussed and mapped out their healthcare journey,
Healthcare Experiences Interviews
Research Goal
Understand the types and extent of participation and collaboration among healthcare providers, patients, and researchers.
Research Tools
Semi structured interactive interviews, journey map, care map, scorecard activity.
This stage involved interactive interviews with 22 individuals, including people living with long covid or diabetes, providers caring for these conditions, and researchers/innovators in the healthcare space. Participants completed a care map, discussed and mapped out their healthcare journey,
and positioned themselves in terms of participation and engagement in healthcare delivery, sharing their views on empowerment within the healthcare system. Finally, they rated their experiences participating in research using scorecard activities. The activities were tailored and adjusted for different participant categories to ensure relevance and accuracy.
and positioned themselves in terms of participation and engagement in healthcare delivery, sharing their views on empowerment within the healthcare system. Finally, they rated their experiences participating in research using scorecard activities. The activities were tailored and adjusted for different participant categories to ensure relevance and accuracy.
Interview Guides
Following are the three interview guides for patients, providers, and researchers.
Interview Guides
Following are the three interview guides for patients, providers, and researchers.
Introduction
5 min
The interviewer introduced themselves and explained the project's background and goals.The interviewee was asked to introduce themselves and answer some warm-up questions.
Care map
10 min
Participants mapped out the people, services, and platforms that provided care throughout their healthcare journey.
Healthcare journey
20 min
Participants mapped out their healthcare journey, discussed each step in detail, shared the associated feelings, and talked about how they would change their journey for the better.
Participation in healthcare delivery
10 min
A participation map was shared with the participants, and they placed themselves on the map according to their level of participation and engagement in healthcare delivery. They also explained their ideal level of engagement.
ScoreCard activity
10 min
Participants rated cards related to their participation in research activities and mentioned some challenges they had been facing.
Wrap up and reflection
5 min
Participants were asked if there was anything they wanted to add, to reflect on the session, and if they knew any potential participants to introduce for the study.
Introduction
5 min
The interviewer introduced themselves and explained the project's background and goals.The interviewee was asked to introduce themselves and answer some warm-up questions.
Care map
10 min
Participants mapped out the people, services, and platforms that provided care throughout their healthcare journey.
Healthcare journey
20 min
Participants mapped out their healthcare journey, discussed each step in detail, shared the associated feelings, and talked about how they would change their journey for the better.
Participation in healthcare delivery
10 min
A participation map was shared with the participants, and they placed themselves on the map according to their level of participation and engagement in healthcare delivery. They also explained their ideal level of engagement.
ScoreCard activity
10 min
Participants rated cards related to their participation in research activities and mentioned some challenges they had been facing.
Wrap up and reflection
5 min
Participants were asked if there was anything they wanted to add, to reflect on the session, and if they knew any potential participants to introduce for the study.
People living with long covid and/ or diabetes interview guide overview
People living with long covid and/ or diabetes interview guide overview
lasted between
50-70 min
lasted between
50-70 min
Conducted
Online
Conducted
Online
Name
Long Covid
Long Covid
Diabetes
Diabetes
Both
Both
21- 78
Age range
21- 78
Age range
Wrap up and reflection
3 min
Participants were asked if there was anything they wanted to add, to reflect on the session, and if they knew any potential participants to introduce for the study.
Wrap up and reflection
3 min
Participants were asked if there was anything they wanted to add, to reflect on the session, and if they knew any potential participants to introduce for the study.
Followup questions
5 min
Based on the available time, a series of questions regarding communication with patients, challenges in healthcare delivery, and participation and involvement in healthcare delivery decisions and research were asked.
ScoreCard activity
10 min
Participants rated cards related to their participation in research activities and mentioned some challenges they had been facing.
Participation in healthcare delivery
10 min
Participants rated cards related to their participation in research activities and mentioned some challenges they had been facing.
Participation in healthcare delivery
10 min
Participants rated cards related to their participation in research activities and mentioned some challenges they had been facing.
Introduction
5 min
The interviewer introduced themselves and explained the project's background and goals.The interviewee was asked to introduce themselves and answer some warm-up questions.
Introduction
5 min
The interviewer introduced themselves and explained the project's background and goals.The interviewee was asked to introduce themselves and answer some warm-up questions.
Healthcare providers giving care for people living with long covid and/ or diabetes
Healthcare providers giving care for people living with long covid and/ or diabetes
lasted
30 min
lasted
30 min
Conducted
Online
Conducted
Online
Long Covid
Long Covid
Diabetes
Diabetes
Both
Both
Followup questions
5 min
Based on the available time, a series of questions regarding communication with patients, challenges in healthcare delivery, and participation and involvement in healthcare delivery decisions and research were asked.
Wrap up and reflection
5min
Participants were asked if there was anything they wanted to add, to reflect on the session, and if they knew any potential participants to introduce for the study.
Wrap up and reflection
5min
Participants were asked if there was anything they wanted to add, to reflect on the session, and if they knew any potential participants to introduce for the study.
ScoreCard activity
10 min
Participants rated cards related to participation of providers and patients in their research activities.
ScoreCard activity
10 min
Participants rated cards related to participation of providers and patients in their research activities.
Participation in healthcare delivery
10 min
A participation map was shared with the participants, and they placed patients and providers on the map according to their level of participation and engagement in healthcare delivery that they assumed. They also explained their ideal level of engagement for those stakeholders.
Participation in healthcare delivery
10 min
A participation map was shared with the participants, and they placed patients and providers on the map according to their level of participation and engagement in healthcare delivery that they assumed. They also explained their ideal level of engagement for those stakeholders.
Healthcare project journey
15 min
participants mapped out a project steps and talked over their challenges and good points and shared what stakeholder was involved in any of the steps and how the experience could be better.
Healthcare project journey
15 min
participants mapped out a project steps and talked over their challenges and good points and shared what stakeholder was involved in any of the steps and how the experience could be better.
Introduction
5 min
The interviewer introduced themselves and explained the project's background and goals. The interviewee was asked to introduce themselves and answer some warm-up questions.
Introduction
5 min
The interviewer introduced themselves and explained the project's background and goals. The interviewee was asked to introduce themselves and answer some warm-up questions.
27- 41
Age range
27- 41
Age range
lasted between
30-60 min
lasted between
30-60 min
Conducted
Online
Conducted
Online
Researchers and/ or Innovators working in the healthcare space
Researchers and/ or Innovators working in the healthcare space
Breakdown of stage 1 activities
Breakdown of stage 1 activities
Care map
The activity opens the discussion about how patients received care and who was involved. The care map activity was designed based on, and draws from, the Atlas of Care by Rajiv Mehta.
Goal:
The warm up activity aimed to create a space for participants to share their healthcare stories, exploring how much of their care and condition management came from the healthcare system versus other resources.
Care map
The activity opens the discussion about how patients received care and who was involved. The care map activity was designed based on, and draws from, the Atlas of Care by Rajiv Mehta.
Goal:
The warm up activity aimed to create a space for participants to share their healthcare stories, exploring how much of their care and condition management came from the healthcare system versus other resources.
Patients’ Activity
Patients’ Activity
Healthcare journey
Mapping out participants' healthcare experiences using a predefined map with stages and steps allowed them to add or remove steps, envision their journey, identify pain points, and highlight what currently works for them.
Goals:
Visualize the entire healthcare experience from the patient's perspective.
Identify key stages and steps in the current healthcare journey.
Highlight pain points and areas of frustration.
Uncover opportunities for improvement and innovation.
Foster a deeper understanding of patient experiences.
Empowers patients to envision improvements in their journeys.
Healthcare journey
Mapping out participants' healthcare experiences using a predefined map with stages and steps allowed them to add or remove steps, envision their journey, identify pain points, and highlight what currently works for them.
Goals:
Visualize the entire healthcare experience from the patient's perspective.
Identify key stages and steps in the current healthcare journey.
Highlight pain points and areas of frustration.
Uncover opportunities for improvement and innovation.
Foster a deeper understanding of patient experiences.
Empowers patients to envision improvements in their journeys.
Patients’ Activity
Patients’ Activity
Healthcare project journey
Mapping out participants' experiences in designing a study, formulating research questions, and executing the study, while examining how they involve patients and providers and addressing the challenges they face.
Goals:
Understand the process participants use to design and conduct a study.
Evaluate how participants involve patients and providers in the research process.
Identify challenges faced during study design and execution.
Gain insights into potential improvements for more effective and inclusive research practices.
Healthcare project journey
Mapping out participants' experiences in designing a study, formulating research questions, and executing the study, while examining how they involve patients and providers and addressing the challenges they face.
Goals:
Understand the process participants use to design and conduct a study.
Evaluate how participants involve patients and providers in the research process.
Identify challenges faced during study design and execution.
Gain insights into potential improvements for more effective and inclusive research practices.
Researchers’/ Innovators’ Activity
Researchers’/ Innovators’ Activity
Participation in healthcare delivery
A map adapted from the Spectrum of Public Participation, developed by the International Association for Public Participation, was shared. This map introduced different levels of participation and engagement for those most impacted by research and design. Participants were asked to reflect on how they perceive their current involvement and how they would like to be involved in healthcare delivery change
Goal:
The aim is to understand the extent and manner in which participants want to engage in sharing data and how they can feel empowered in the process.
Participation in healthcare delivery
A map adapted from the Spectrum of Public Participation, developed by the International Association for Public Participation, was shared. This map introduced different levels of participation and engagement for those most impacted by research and design. Participants were asked to reflect on how they perceive their current involvement and how they would like to be involved in healthcare delivery change
Goal:
The aim is to understand the extent and manner in which participants want to engage in sharing data and how they can feel empowered in the process.
All groups’ Activity
All groups’ Activity
All groups’ Activity
All groups’ Activity
ScoreCard activity
Adapted from the work of The Council of Medical Specialty Societies (CMSS) and the Patient-Led Research Collaborative (PLRC), participants rated various cards on a designed scale related to different levels of participating in research.
Goal:
This activity aims to delve into a more detailed understanding of participants' involvement in various types of research, from hypothesis generation to analysis, and including other considerations like compensation.
ScoreCard activity
Adapted from the work of The Council of Medical Specialty Societies (CMSS) and the Patient-Led Research Collaborative (PLRC), participants rated various cards on a designed scale related to different levels of participating in research.
Goal:
This activity aims to delve into a more detailed understanding of participants' involvement in various types of research, from hypothesis generation to analysis, and including other considerations like compensation.
Stage 2
Series of Surveys with Patients, Providers, and Researchers
Stage 2
Series of Surveys with Patients, Providers, and Researchers
Provotype Feedback Survey
Research Goal
Investigate researchers', patients', and providers' opinions on the designed provotype, understand their needs and behaviors, and explore different modes of participation, collaboration, and involvement in the healthcare system to enhance healthcare experiences. Additionally, identify potential areas for future focus.
What is a Provotype?
A provotype is a provocative potential solution designed to stimulate discussions and dialogues around a specific topic.
Surveys in qualtrics begin with background and warm-up questions about participants' participation, collaborations, and involvement in healthcare-delivery change. Participants are then presented with a provotype and asked for their feedback and ideas.
Provotype Feedback Survey
Research Goal
Investigate researchers', patients', and providers' opinions on the designed provotype, understand their needs and behaviors, and explore different modes of participation, collaboration, and involvement in the healthcare system to enhance healthcare experiences. Additionally, identify potential areas for future focus.
What is a Provotype?
A provotype is a provocative potential solution designed to stimulate discussions and dialogues around a specific topic.
Surveys in qualtrics begin with background and warm-up questions about participants' participation, collaborations, and involvement in healthcare-delivery change. Participants are then presented with a provotype and asked for their feedback and ideas.
