eMPowEr

Twinning solution

Palliative care tool for cancer patients suffering from Malignant Pleural Effusion (MPE)

Twinning type

Knowledge exchange

Main policy priority

Digital tools for citizen empowerment and for person-centred care

Originator

National University of Galway (Ireland)

Adopter(s)

The Netherlands Cancer Institute/Antoni van Leeuwenhoek Hospital (Netherlands), Deventer Hospital (Netherlands)

Short description

Malignant pleural effusion (MPE) occurs in up to 15% of people with any cancer and MPE patients generally have a predicted survival of 3-12 months. Their symptoms are managed through palliative care with the goal to relieve their breathlessness, limit the time they spend in hospital, and support a good quality of life during their end-of-life stage. This twinning aims to design a digital tool to support patients with advanced cancer who experience MPE to manage their symptoms independently and improve their quality of life, and to facilitate healthcare professionals to monitor patients’ symptoms remotely. The originator, NUIG, and Adopter institutes, in The Netherlands, NKI/AVL and Deventer, will conduct a knowledge-exchange twinning to establish the requirements for an optimum digital tool in this area. In 2018, 23.9% of all cancer diagnoses in The Netherlands were due to breast and lung cancer, which are the two most common causes of MPE. As healthcare services and treatments continue to improve, more people with cancer will be living for longer, and will require palliative care to manage their symptoms. Research has shown that the requirement for palliative care in over 85-year olds could double by 2040.

News

Twinning activities

The goal was for the originator NUIG team to meet with clinical experts from NKI/AVL, and Deventer hospital in The Netherlands to run Discovery Sessions to identify their unmet needs in relationship to treating MPE patients and establishing their requirements for a digital tool. The NUIG team completed the Discovery Sessions with the two clinical centres outlined, and as sessions were conducted online due to COVID-19 the team also conducted sessions with clinicians in Galway University Hospital Ireland in Ireland, Amsterdam UMC in The Netherlands, and MD Anderson in the US. The team wanted to ensure that the feedback collected included any potential variations due to geography or centre resources. Overall, the team collected feedback from five clinicians, eight carers and one patient. Due to receiving only one response from a patient it is not possible to produce actionable points for the patient cohort, though within this patient population carers are typically heavily involved with their symptom management regarding MPE and, therefore, provide valuable insights into patient needs. A first draft paper mock-up design was created by NUIG’s College of Engineering and Informatics based on the design inputs gathered from the Discovery Sessions with the adopter institutes and patient/carer groups. The core originator team provided feedback on the design on a number of occasions until the final design and required functionality was achieved.

Outcomes

There were three outcomes from the twinning: 1. A set of Actionable Points gathered from Stakeholders (Clinicians/Carers/Patients) that served as the design input for the smartphone app. 2. The design and development of a functional smartphone app that can be tested with clinicians and patients. 3. A network of adopter centres that will support future patient studies to assess the usability of the app amongst patients and their carers.

Added value and benefits

The twinning between NUIG and University Hospital Galway was beneficial as the twinning activity helped to strengthen what was already a very positive working relationship, however through the discussions around the app we believe the clinician in University Hospital Galway is now more ‘bought in’ to the team’s vision for their whole device offering. Furthermore, the clinician in this centre has agreed to conduct a patient study to assess the usability of the app. The twinning between NUIG and the centres in the Netherlands was also a positive one. Although we had no significant previous interaction with these centres they were fully engaged with the qualitative survey to assess the clinician needs and all felt the activity was a worthwhile endeavour. Ethical approval for a patient study to assess the smartphone app is potentially a complex process and thus may prevent the app to be tested initially in the Dutch centres, but due to their involvement in the twinning, once the app is approved for use the clinicians will be motivated to adopt based on their input to the design and benefit they see it can offer their patients.

Barriers and success factors

The key enabler for the success of this twinning was the common goal amongst the originator and the adopters, which was to improve the patient pathway and quality of life for patients with malignant pleural effusions. In addition to this taking a structured approach to all interactions meant that the most relevant insights were captured. Although not a significant barrier to the overall success of the project, the engagements with adopters may have been more meaningful if there hadn’t been travel restrictions which prevented the teams from having a face-to-face interaction and in-depth discussion relating to the whole patient pathway. On the other hand, the COVID-19 restrictions have highlighted the need for a digital approach amongst clinicians to support vulnerable patients at home due to their susceptibility to infection.

Outlook

The originator NUIG team are currently in the planning stages for a patient study involving three sites across US and Europe to test the device in Q1/Q2 2021. This patient study will involve a quantitative and qualitative approach through survey and interviews to assess the value and usability of the app. After the initial patient studies assessing the apps usability, the insights from the study will be used to further optimise the design of the app. The newer iteration of the app will then be assessed again in conjunction with NUIG’s catheter technology in Q4 2021. Assuming the benefits of the app are demonstrated within the second patient study, the NUIG team then aim to release the app for consumer use in early 2023 following approval from the relevant regulatory bodies.