Project 1: Impact Case ​

@Shaw @Maggie @Ethan @Yinghou

Team Contract ​

Common Objective:

• The team is focused on creating a meaningful, useful, and impressive application rather than aiming for specific grades.

Personal Goals:

• Ethan: To utilize classroom knowledge in building a cool and personalized app.
• Shaw: To find and solve a meaningful problem while enjoying the process.
• Yinghou: To develop a complete app with a sophisticated interface and innovative features.
• Maggie: To construct a well-functioning, cool app that has significance.

Meetings:

• Weekly meetings for approximately an hour via Zoom, with in-person gatherings as needed.

Quality of Work:

• Past work will be reviewed during meetings, and development will often involve pair programming.

Task Distribution:

• Tasks will be divided between front-end and back-end according to individual preferences.
• Members are responsible for notifying the team and teaching staff if a deadline cannot be met.

Decision-Making:

• Decisions will be made democratically, with the whole team voting on all major decisions.

Problem Statement ​

Problem Area ​

Palliative care improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social, or spiritual. The quality of life of caregivers improves as well. According to the World Health Organization (WHO), palliative care is often not included in national health policies and systems, and training on palliative care for health professionals is often limited or non-existent. Particular problems within this domain might be: How to enable broader access to patients and caregivers, How to better facilitate conversation and communication during this critical time for different stakeholders, and How to give various types of palliative care on demand.

Tentative Solution ​

An app to aid mental health through the facilitation of communication between palliative care patients and their family members or related people in their network. The main niche of this app is to be patient-centric by placing the control of the communication in the hands of the patient.

Draft Impact Case ​

The problem of fostering communication between patients who suffer life-threatening illnesses and others is important because it could greatly improve the quality of life of patients and their families.

Our solution to address this problem is to design a communication app centering the patients, empowering them with control over their communications with family, friends, and healthcare professionals. We believe this is a good solution because the topic of death in palliative care patients is often a stigmatized topic, resulting in many mental health issues and a lack of communication.

We will measure the success of our outcome by conducting user tests and surveys.

Identify interviewees ​

• Stakeholders
  1. palliative care patient
  2. patient’s loved ones (aka family or friends)
• Healthcare Professionals
  1. doctor
  2. nurse
  3. caregiver
  4. palliative care expert

Research Findings ​

• Palliative Care Guidelines Plus (PCG Plus)
  • Provides healthcare professionals with guidelines for palliative care.
  • Gap: May not be directly accessible to patients and their families, limiting their understanding and involvement in care planning.
• Serious Illness Care at Ariandne Labs
  • Aims to ensure every seriously ill patient has conversations about their goals and priorities.
  • Gap: While the program seeks to improve communication, it is not widely accessible to patients and caregivers and hard to track their wishes outside of clinical settings.
• My Pain Diary
  • An app that helps patients track and manage their pain.
  • Gap: While useful for tracking pain, it may not address other aspects of the patient such as emotional support or logistical planning for end-of-life care.
• CaringBridge
  • A free social networking platform for patients to communicate with family and friends.
  • Gap: Focuses on communication and updates but may not offer tools for advanced care planning or decision-making support.
• Axxess Palliative Care
  • Offers clinician-specific point-of-care documentation for palliative care organizations.
  • Gap: Tailored for clinician use and may not directly engage patients in the documentation or care planning process.
• Cake
  • End-of-life planning platform.
  • Gap: I encountered some difficulties in accessing detailed reviews and specific features of Cake to fully understand potential gaps.

From this overview, some common gaps across the solutions may include:

• Lack of integrated patient engagement in care planning and documentation.
• Insufficient tools for patients to initiate and document their care preferences outside of healthcare settings.
• Limited resources for comprehensive end-of-life planning that address legal, emotional, and physical care aspects.
• Potential lack of access or awareness of these tools among patients and families.

Interview ​

1. Ethan —> Caregiver (i.e., nurse)
2. Yinghou —> Family member of the patient
3. Maggie —> Medical professional (student in rotation)
4. Shaw —> Expert in palliative care

Interview Questions ​

Maggie:

• From your experience, what are the most common communication issues faced by palliative care patients?
• Can you share any experiences where you felt a patient's quality of life could have been improved with better communication tools?
• What kind of information do you think palliative care patients would want to communicate through an app?
• In your opinion, how can technology be used to empower palliative care patients in their communication with healthcare professionals and their families?
• In your experience, what do you think hospitalized patients could benefit most from?
• Do you think there is any stigma associated with talking about death and what do you think would be an appropriate approach to this topic?
• What does the current support for palliative patients look like, and what do you think is lacking the current program?

Ethan:

• What is your connection to the healthcare system?
• What do you aspire to be within the healthcare system?
• Give me a brief overview of your curriculum as a nursing student.
• Has your curriculum touched on palliative care at all?
• How frequently/long have you been working with patients?
• In your opinion, what is the most important aspect of patient care?
• What forms of communication are employed? Is it mostly in person? Is it digital? Are there organized or formal communication structures?
• Is there validity (benefits) in having digital communication structures within the healthcare system?
• Before we finish, are there any other interesting perspectives/observations that you would like to share about palliative care or digital communication within the healthcare system?

Shaw + Erik:

• Understanding the Expert’s Background and Experience
  1. Can you share your journey and experience in the field of palliative care?
  2. What motivated you to specialize in palliative care?
  3. Could you describe a few instances where you felt your work profoundly impacted your patients and their families?
• Insight into the Palliative Care Landscape
  1. How would you describe the current state of palliative care in our health system?
  2. What are the most significant barriers you've encountered when trying to provide comprehensive palliative care?
  3. How has palliative care been integrated into national health policies from your experience, and what gaps still exist?
• Expert’s Perspective on the Problem Domain
  1. What are your thoughts on the challenges of access to palliative care for patients and caregivers?
  2. Can you discuss the importance of communication in palliative care and the common obstacles faced?
• Feedback on the Tentative Solution
  1. We have proposed an app designed to facilitate communication between patients and their support network. How do you see technology playing a role in palliative care?
  2. From your professional perspective, how might a patient-centric communication app impact palliative care delivery?
  3. What features do you believe are essential for an app aiming to aid in mental health and communication for palliative care patients?
  4. What potential risks or challenges should be considered when designing an app for palliative care communication?
• Recommendations and Final Thoughts
  1. How can we ensure that an app for palliative care patients maintains a high standard of privacy and security?
  2. What measures would you recommend to ensure that such an app is inclusive and accessible to all patients, regardless of their age or technical skills?
  3. Can you suggest any additional services or features that might complement our app and further support patients and families?
  4. In what ways could we involve healthcare professionals in the development and implementation process to ensure the app meets practical needs?
  5. How should the success of this app be measured from a clinical and patient well-being standpoint?
  6. Lastly, do you have any advice or any other insights for a team developing technology solutions for palliative care?

Yinghou:

• How often did you talk to your dad during those days?
• In terms of communication, was there any problem or something you felt that actually could be better?
• How would you explain the way your dad acted?
• How was your family feeling?
• Was there any special thing/ regretful things you may remind about those days?
• Do you think anything could actually help your dad?
• In general, how would you describe those days?

Interview Summaries ​

Interview 1 (Maggie + Emily): ​

Medical student Emily, during her rotation at a Colorado Springs hospital, shared her insights about the communication needs of palliative care patients. She suggested features for a patient-centric app that caters to these needs and supports their families.

Key Points:

• Palliative care patients often feel unheard and desire a patient-centric approach.
• Many patients lack family members; an app could help connect them with friends, akin to the Bumble app.
• The app should also support family members dealing with the situation.
• The app needs to be easy to use, accessible to all, and use clear, direct language
• The app could manage expectations and provide educational resources.
• A digital diary with a forum feature could help patients feel heard and build a community.
• Providing resources about end-of-life symptoms could make the process less traumatic.
• The app could facilitate family members to send cards or reminders to patients.
• Respecting patients' religious beliefs is crucial; a survey during app setup could set preferences and priorities.
• The app should facilitate communication of these preferences to the care team.

Interview 2 (Ethan + Riley): ​

This interview was conducted with Riley, a current senior at Simmons University within their nursing program. She gave excellent insight into a nursing student's curriculum and daily life. Specifically, Riley has more experience working within an intensive care unit (ICU) from her curriculum and outside of school. Here are some key takeaways from our conversation:

• as a nurse/caregiver, it is critical to express empathy towards the patient / loved ones
  • easy to become desensitized to the environments within healthcare clinics
  • “a normal day for [a caregiver] is the worst day of [the patients / their family] lives.
• palliative care is a super important aspect of health care, yet overlooked at times
  • candidly admitted that palliative care is not a main focus within their curriculum
  • palliative care is generally stigmatized by patients’ loved ones
  • patients generally see it in a more positive light in that “it is a door to end the suffering.”
• digital forms of communication have both pros and cons
  • patients and their families feel more involved in the treatment process
  • source of friction = attempting to interpret the results of scans labs from online research
• communication within the healthcare system has extensive restrictions and protocols
  • HIPPA —> in our app, communication with healthcare professionals likely infeasible
  • narrow focus to communication between patients and family

Interview 3 (Shaw + Erik): ​

Erik is a seasoned palliative care expert with over two decades of experience at Dana-Farber's Outpatient Palliative Care Clinic. He also leads as the Director of the Serious Illness Care Program at Ariadne Labs, where he focuses on the program's research development and its wider implementation. Some key points from our interview:

• Current State of Palliative Care:
  • A significant gap exists in palliative care provision, with only 15-20% of the 20 million patients in need receiving adequate care. This shortfall is attributed to resource scarcity.
  • A geographical imbalance is noted in the availability of palliative care services, with a concentration of experts in the eastern regions, leaving the central and western areas underserved.
  • Marginalized and underrepresented groups face even greater barriers to access.
  • Palliative care is often misunderstood and associated with end-of-life scenarios, contributing to a societal stigma that hinders its acceptance and integration into patient care.
• Communication Challenges for Patients:
  • Repetitive Narration: Patients are emotionally taxed by the necessity to recount their medical history repeatedly.
  • Unwarranted Advice: Well-meaning advice can inadvertently lead to patient frustration.
  • Sharing Updates: The struggle is real for patients when it comes to communicating their health updates to loved ones and caregivers.
• Opportunities for Improvement and Potential Obstacles:
  • AI agents have shown promise in facilitating emotionally intelligent conversations, sometimes outperforming human interactions.
  • There’s not an integrated platform that allows patients to effectively update their health status or document advanced care directives and wishes.
  • Physical challenges such as impaired vision are common among the seriously ill, posing difficulties in the use of digital tools.
  • Engaging healthcare providers remains complex; however, a platform that could generate concise and relevant health summaries for professional review would be beneficial.

Interview 4 (Yinghou + Cici): ​

In this interview, we talk with the 24-year-old girl Cici, who reflected on her father's passing when she was 21. Many details remain sharp and revealing. Her recollections of those "unreal" days underscore a common struggle for families in palliative care, where the dread of loss disrupts the normal rhythms of communication.

• The interviewee's parents shielded her from the harsh reality of their impending loss, which limited her conversation with her dad: Both societal and familial cultural norms that typically exclude the youth from conversations about death.
• A general discomfort and avoidance around the topic of death in the family restrict the conversation. Under the intense situation, people are afraid of hurting each other, thus many conversations are regretfully missed.
• The interviewee’s dad (the patient) was found to be more comfortable talking about his situation with someone who is not directly related, such as the nurse.
• The lack of a safe and comforting way for the dying to express themselves creates an overarching fear of the unknown within their whole families. The interviewee believed that finding a way for her father to share his thoughts more comfortably could have benefited everyone involved.
• “Do something for the patient to express” to help better the whole family “to understand and to respond.”

VSD Analysis ​

Revised Impact Case ​

The problem of fostering communication between patients who suffer life-threatening illnesses and others is important because it could greatly improve the quality of life of patients and their families. Based on our interviews, we discovered that communication often deteriorates in palliative scenarios due to stigma, cultural barriers, and inexperience with end-of-life discussions.

We propose an app designed to sustain and nurture communication between palliative care patients and their families throughout the illness journey and beyond. Upon initial use, the app will start with an introductory survey to tailor the app according to their preferences and needs. Then progress on to an educational resource segment, informing patients and families about the palliative process, what to expect, and how to prepare for the stages of death. Throughout the palliative care process, the app will help support communication between the patient and their family members through various features, such as secure messaging and the exchange of digital tokens. After the patient passes, the app offers a unique a ‘time capsule’, allowing patients to share pre-composed messages and memories, aiding families in the grieving process.

We believe this is a good solution because addressing the taboo of death is crucial as it contributes to mental health struggles and communication breakdowns in palliative contexts. Our app offers a dual benefit: a 'listening ear' and a therapeutic space for patients, as well as a supportive tool for families to cope with the impending loss and transition.

The effectiveness of our app will be gauged through user feedback and targeted surveys pre- and post-implementation, assessing the impact on user experience and the quality of communication.