Improving Healthcare for individuals with poorly understood chronic illness


Research Area:

Chronic illness/ Service Improvement

What is the research about?

The research is part of a multi-phase PhD project exploring the journeys, needs and experiences of individuals in Ireland who live with poorly understood chronic conditions or “unexplained” symptoms (including ME/CFS, Ehlers-Danlos Syndrome, POTS, FND, Fibromyalgia and others). The aim is to create recommendations for change.

The current opportunity is for 2 individuals with lived experience to be involved in the analysis of patient interviews. No academic background is needed – the contributors will be trained in methods and encouraged to draw on their personal expertise throughout.

Opportunity for:

Person living with condition / Service user

Involvement Opportunity Details


Time commitment:

3 meetings (up to 1.5 h, online) and 1 methods workshop (online, 2 hours)

Contact between meetings:

Contact by email to arrange meetings, share data , and circulate documents post meetings (1 time per week= 5 instances). The researcher is available for contributor-initiated contact beyond this. Contributors will be conducting interview analysis between meetings.

Length of involvement:

5 weeks of involvement, with opportunity for further engagement in dissemination and manuscript write up

Start date for involvement:





If online, explain how:

The methods workshop and meetings will occur online via video-conferencing modality preferred by the contributor (e.g. Zoom, Teams). Contact will be by email. Interview transcripts will also be shared by email in a PDF document.

If in person, explain where:

Not applicable

Other ways of communicating:

Mobile / Whatsapp

Funding available for:

PPI contributor’s time

If no funding available, explain why:

Not applicable

Other Information

Stage of the research study/ programme:

More than one research study

Is this opportunity for PPI in a PhD:


Closing date to contact researchers:


Research Team

Contact person:

Natalia Duda


Trinity College Dublin

Contact email:

Researcher background:

Doctoral researcher (Psychology) and Patient

Research funder:



Interested in this PPI Opportunity?

Please complete this form and click SUBMIT

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