And patient and a doctor share thoughts

Putting patients first with public patient involvement

  • Research

As one of the few educational institutions in the world dedicated solely to health sciences, RCSI is distinctive in our focus on advancing global healthcare and transforming the patient experience.

RCSI's researchers and clinician scientists have a unique clinical and patient-centred focus to drive impactful discoveries and insights into critical global health issues, allowing us to better understand and respond to changing healthcare needs. This reflects our institution-wide commitment to the third Sustainable Development Goal: good health and well-being.

Our patient-centred approach allows us to fully appreciate that people with lived experience of health complications and illness, have unique and valuable perspectives on the patient experience in healthcare that can enhance the relevance, quality and impact of research. That is why we are committed to embedding public patient involvement (PPI) across all RCSI-led research, supporting patients and the public to become involved in research at every stage of the journey, from research design through to dissemination of results and translation into healthcare practice.

A partnership for change

Here, RCSI’s PPI Manager Lorna Kerin shares one example of how PPI can unite patients in a community, raise awareness among researchers and clinicians of the patient experience and give rise to meaningful research collaboration.

RCSI joined the national PPI Ignite Network as one of seven lead PPI Ignite sites in 2021, and the RCSI Public Patient Involvement (PPI) Office was established to drive the institutional PPI capacity building initiatives and to progress RCSI commitments to the National PPI Ignite Network.

One of the initiatives that illustrates the power of the PPI collaborative approach to partnering with patients on projects is the Sjögren’s syndrome PPI project led by RCSI researchers Dr Joan Ní Gabhann-Dromgoole and Dr Emily Greenan.

Sjögren's syndrome is an autoimmune disease that causes the patient’s white blood cells to attack the body’s mucous membranes, causing severe dry eyes and mouth, fatigue, joint and muscle pain and a range of disease associated complications significantly impact patient day-to-day activities and quality of life. While the numbers in Ireland are not yet known, up to 1% of the population can suffer from this autoimmune disorder, predominantly women who are typically aged between 40-50 years at first onset. However, patients are greatly underdiagnosed in clinical settings due to the variety of associated medical symptoms.

The challenge facing the researchers, who wished to involve patients in their research, is that there was no dedicated health charity or centralised patient support network. The dilemma was how to invite patients to collaborate in research as partners if you can’t find them in the first place?

Benefitting from some PPI training and working with a patient advocate Deirdre Collins, the researchers planned the first Sjogren’s syndrome patient information event in Ireland. Taking place on World Sjögren’s Day in July 2021, the event was attended by 209 participants and resulted in 15,285 Twitter impressions, further demonstrating the demand for support and engagement on the condition.

This event was the first time most of the attendees had ever met other people with the same syndrome, having suffered with the condition in isolation for years or even decades. During the event, patients were provided with direct access to clinical and research specialists to ask questions about different aspects of the condition they live with every day. Evidence-based advice for managing the diverse range of symptoms was provided by invited clinicians specialising in ophthalmology, dentistry, dermatology, rheumatology, endocrinology and primary care.

People living with Sjögren’s syndrome also heard the perspective of lived experience from the collaborating patient advocate and the need to build a patient community for peer support and research. Participants were offered the opportunity during and post-event to identify their own priorities as patients for research topics and to express their interest in collaborating in PPI with RCSI researchers. This has resulted in a growing database of patient-identified research topics and a pool of motivated PPI research collaborators.

The patient advocate later remarked: “I was completely unaware of PPI before, but I'm very excited about its possibilities now. I've had numerous messages from people with Sjogren's who attended the webinar and loved your talk. There's lot of excitement about patient involvement which is incredibly uplifting.”

Showing the progress that can be made when a community of interest is brought together, the researchers have initiated research with this new network of patient advocates to produce empowering research with PPI at its core. Also very significant, given the complete absence of support for Sjogren’s patients, is the development of a patient-informed webpage in collaboration with RCSI to offer patients the evidence-informed information, guidance and support they need.

You can listen to this fascinating discussion between Deirdre Collins, a patient advocate living with Sjogren's syndrome and Dr Joan Ni Gabhann, RCSI Lecturer in Ophthalmology and Immunology, about their experience of collaborating to involve patients as research advisors, facilitated by Lorna Kerin, RCSI Manager of Public Patient Involvement.

Patients can opt in to become more involved in Sjogren’s syndrome research or PPI by contacting sjogrensireland@gmail.com. The patient support organisation can also be found on Twitter, Facebook and Instagram. by searching for 'Sjogrens Ireland.

To find out more about PPI at RCSI, please follow @RCSI_PPI_Ignite on Twitter.

Sjögrens Syndrome Ireland webinar

Join the first Sjögrens Syndrome Ireland webinar where we will be joined by scientists from the Ocular Immunology Research Group RCSI, experts in public patient involvement and Sjögrens patient advocates who will discuss how to improve Sjögrens research in Ireland.

Date: Tuesday, 19 July 2022

Register now


RCSI is committed to achieving a better and more sustainable future through the UN Sustainable Development Goals.

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