TIME 2023 – ongoing
SKILL Service Design, Co-creation, Content & UI design, Videography
CLIENT National Heart & Lung Transplant Centre Dublin
TEAM Mater Transformation

The Transplant Window

“The hope is to get those additional five years of life.”

—  Patient (64), currently waiting for a single lung transplant

Accepting deteriorating health and the need for a transplant is an immense emotional and physical challenge for both patients and their loved ones.

The transplant journey is unique to each individual, with different stages and experiences, but strict adherence to medical regimens is vital for success. This process includes major surgery, followed by lifelong aftercare to prevent rejection and manage complications, which can be challenging both physically and mentally.

Identified stages of a lung transplant journey
through co-creation with staff and patients

Defining the problem

“I don’t remember one single comprehensive item that talks me through what would happen.”

—  Steve (41), double lung recipient

The aim of the project is to provide patients and their carers with a complete information system for lung transplantation in Ireland that will accompany them at all times on their life-changing journey from day one.

Audio excerpt of a patient interview, March 2024

How might we ...

Project phase 1/4

Ethnographic research

Visiting the outpatient clinic

We visited the outpatient clinic to observe the current experience firsthand and gain a deeper understanding of the challenges patients face, putting ourselves in their shoes.

Current information resources

We conducted an in-depth analysis of the current patient information, with a focus on the 80-page lung transplant booklet provided to patients at their assessment stage at the Mater, to evaluate its comprehensiveness and effectiveness.

Visiting the ward

To gain a holistic understanding of the transplant journey, we also gathered insights from staff by spending time onsite in the wards and shadowing various members of the multidisciplinary team.

In-depth patient and care partner interviews

Listening to patients' voices

Over several months of interviewing patients about their transplant journeys, we’ve gained valuable insights into the diverse challenges they face. Each story is unique, shaped by different medical needs and coping strategies. Engaging with care partners has also revealed the significant role they play and the often-overlooked difficulties they encounter.

These conversations emphasize the need for more comprehensive support from national transplant services— better communication, coordinated care, and mental health resources to address the full spectrum of patient and care partner needs.

Generated insights

The transplant journey

After synthesizing the interviews, we identified key patterns and recurring issues. Four main areas emerged as particularly important: access to information resources, tailored support for families and care partners, connections with transplant peers, and communication with healthcare staff.

Project phase 2/4

Sensemaking

The transplant journey

To deeply understand the entire transplant process, I have developed several journey maps that capture the staff’s actions, and the usage of information resources. 

This has proven to be a successful tool for engaging in discussions with staff and provides a better understanding from a patient's viewpoint.

Co-creation with staff

Through numerous workshops and co-creation sessions with the healthcare team, we validate our research findings through the perspectives of various transplant roles:

• Physicians
• Pre and post transplant nurses 
  
• Surgeons
• Pharmacists
• Physiotherapists
• Dietitians
• Psychologists
• Social Workers
• Palliative Care

Defining principles

As a result of the research and stakeholder engagements, we have developed design principles that outline the key needs our future end-to-end support system has to address.

A support system needs to ...

Project phase 3/4

Content gathering

Information chunks

Based on the research, we identified key pieces of information that need to be addressed throughout the transplant journey. To make these accessible, we printed them on cards, enabling all stakeholders to easily engage with those insights.

Card sorting with patients

We invited patients to review all the topics and organise them across 7 standardized stages of the transplant process. This gave us valuable insight into their preferred timing for information at each stage, enabling us to better tailor future resources.

Staff co-creation

We have maintained ongoing collaboration with the multidisciplinary transplant team to ensure they stay aligned with our evolving understanding of patient needs. During a workshop, we collectively determined who would be responsible for gathering specific chunks of information.

Prototyping website and physical booklets

Booklet prototypes

We are developing physical booklets to complement the website’s self-care service, designed to be a co-fillable tool for both patients and their medical teams. These booklets will be a practical resource, helping patients track their progress and communicate effectively with their healthcare providers.

Website wireframes

Paper wireframes are the first step to explore different the narratives and usability aspects of the website. This iterative process allows us to test and refine the user experience, ensuring the final design meets the diverse needs of patients and their caregivers.

UX Storyboard

This animated UX storyboard helped us to communicate our vision for the website to the medical team and highlights the different touchpoints of patients and care partners over time.

Project phase 4/4

Work in progress

Website development

The development of the patient-friendly website is currently underway with the collaboration of a third-party web development agency. This agency is fully informed of the core needs of the patients and is working closely with us to ensure a seamless, intuitive experience.

All medically approved content, curated by content designers and multidisciplinary teams, is being provided to ensure the information is accurate and reliable.

The goal is to create a website that effectively supports patients throughout their transplant journey, with easy access to the right information at the right time.

Video creation

Videos are a central feature of the transplant website, offering an accessible and informative medium for patients and families. With contributions from medical staff and real patient stories, the video series covers essential topics such as medication routines, ICU experiences, and how to communicate transplant details with family and children.

I have been heavily involved in video production, from creating storyboards and recruiting patients and staff to filming in the hospital and handling digital post-production.

Project management & documentation

The project progress is documented in FigJam, which includes affinity boards, interview notes, research synthesis, and prototyping outcomes.

Notion is used throughout the project to manage meeting documentation, track content gathering, and ensure reporting is up to date, while also measuring progress against the project's initial goals.