TIME 2023/24, ongoing   SKILL Service Design, Design Research   CLIENT National Heart & Lung Transplant Centre Dublin   TEAM Mater Transformation

The Transplant Window

Challenge

• Streamlining and digitising the amount of information given to transplantation patients
• Incorporating the needs of care partners and healthcare staff

Approach

• Double Diamond Process 
• Design research, journey mapping, in-depth interviews
• Co-creation with healthcare staff, patients and care partners

Goal

• Build an end-to-end patient education and support system for lung transplant patients and their care partners

The ‘Transplant window’ is the period of time during which a successful transplant can take place.

To get into this ‘window,’ it takes a lot from patients and their care partners. Lung transplant is only offered to patients who have severe lung disease for which other treatment options are no longer adequate.

Patients must adhere to a strict medical regimen to firstly optimise their chances of a successful transplant. If they become successful candidates for transplantation, they must prepare for and undergo life-changing major surgery. The implications of this procedure are to prepare for a lifetime of aftercare to avoid rejection reactions or other complications.

Identified stages of a lung transplant journey

What is needed?

 
The aim is to provide patients and their care partners with a comprehensive information system for lung transplantation that supports and accompanies them on their life-changing journey.

A large team is involved in the care of a lung transplant patient, ranging from physicians, nurses and carers before and after the transplant to dieticians, physiotherapists, pharmacists and psychologists. Each of them provides the patients with special information, medical education and accompanies them on a human level.

Healthcare providers often rely on verbal education, even though patients’ memory for medical information is often poor, especially if they are anxious or have language barriers.

There is a need for a major paradigm shift in healthcare, away from the traditional model where patients are passive ‘recipients’, towards a self-empowered model.

— Sláintecare (2017), WHO (2015)

Phase 1

Ethnographic research

Visiting the outpatient clinic

Current information resources

Visiting the ward

Patient interviews

 
In a first round of interviews, we were able to have in-depth chats with 12 transplant patient and 5 care partners as well as 13 staff members of various roles.

In conversation with patients who are either waiting for a transplant or have already undergone successful surgery, we have gathered insights on the following topics:

Insights interviews

Phase 2

The Transplant Journey

Developing the transplant journey

To better understand the entire transplant process, we focused on developing an analog journey map that shows all roles of staff, when they come into contact with patients, what information they pass on and when they leave the process.

This has proven to be a successful tool for engaging in discussions with staff members and visualising the parallel steps for them from an external perspective.

Staff workshop

The current state of lung transplant information

To better engage with the healthcare staff, we have been conducting a workshop. There was great participation from 8 different roles in the transplant unit: 

• Physician
• Transplant coordinators
• Post transplant nurses 
• Surgeon
• Pharmacist
• Physiotherapist
• Dietitian
• Psychologist

It was a good opportunity to share all the research findings with staff and get them thinking about when to give out patient information and in what format. This workshop resulted in a visual documentation of the status quo of patient information.

Measurements

The current state of lung transplant information

For the evaluation of the impact of future digital support toolkits, pre and post-intervention measures include:

• Patient experience surveys
  
• Analysis of self-care behaviours
  (diet, exercise and medication compliance)
• Safety incidents (medication errors)
• Preventable crises phone calls
  and hospital re-admissions

Defining principles

How might we ...

This future support system needs to ...

Phase 3

Card sorting

The first step in the content gathering process is using the card sorting technique.

The card sorting helps us to collect the experiences of the patients and especially their care partners to find out at which point of the journey they would like to receive which information or address certain topics. Afterwards, we can simply compare the participants' results.

Staff engagement

We were able to establish a fix core team of 4 staff members who are willing to drive the project forward with us. 

We hold regular monthly meetings to discuss progress and the next steps. We are currently also trying to involve a patient representative.

For the content creation process, the entire multi-disciplinary team will be on board to contribute information that patients need to receive. 

Process documentation

The entire process is visually documented in FigJam, containing observation photos, affinity boards, interview notes, research synthesis.

In addition to FigJam, the tool ‘Notion’ is used to support meeting documentation and stakeholder management.