For Public & Patients

The Patient Voice in Health Research

Partnering with patients and the public to shape the research agenda

We believe that through public and patient involvment (PPI) in health research, we can better shape the research agenda together, improve the quality of our research, its relevance to society and positively impact on patient outcomes ultimately.

The concept of public and patient involvement (PPI) in research is relatively new in Ireland. PPI describes a whole variety of ways in which researchers can engage with the people for whom their research is relevant. It is an important step in ensuring that the real life experiences of patients are considered in decision-making processes around research.

At UCD Conway Institute, the Patient Voice initiative began in April 2016 when more than 100 cancer survivors and their families joined health care professionals, researchers, patient advocates, funding agencies and charity groups at an open forum in UCD. The discussion focused on placing survivorship at the heart of the research agenda and giving participants the opportunity to voice the questions and concerns that matter most to cancer patients and are likely to improve the relevance of cancer research. Today, the initiative has expanded considerably and now involves researchers working in the disease focused research areas below.

Contact Us: 
Elaine Quinn, Institute Manager (Communications & Education), UCD Conway Institute
T: +(353-1) 716 6706 | E: elaine.quinn@ucd.ie

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Hosted by UCD Centre for Translational Oncology
Led by Professor Amanda McCann

Engaging cancer patients, cancer researchers and other interested parties (families, carers, patient advocates and healthcare professionals) in discussions and decision making that positively impact on cancer treatment and patient outcomes.

Event TitleFormatDateReports
Placing Survivorship at the Heart of the Research Agenda Research laboratory tours & facilitated roundtable discussion 13-Apr-2016 2016 PVCR Report_Survivorship
Creating the Roadmap Talks & designing a survey for patients to be involved in research 19-Oct-2016  
Is there a Clinical Trial for Me? Talks & panel discussion 12-Apr-2017  
Fund my Research & Know my DNA Talks & interactive session on advanced diagnostics 11-Apr-2018  
Research in Action (in conj. with launch of UCD Centre in Translational Oncology)   Cancer research laboratory tours 12-Sept-2018  
Have your Say - National Patient Experience Survey Facilitated workshop with National Cancer Registry of Ireland 10-Apr-2019

2019 PVCR Report_NCRI

2019 NCRI Policy Response

Streamlining participation in health research biobanks  Facilitated workshop with National Biobank Working Group  9-Oct-2019 2019 PVCR Report_NBWG
Dragons' Den - Involving Patients & Carers in Research  Facilitated roundtables hosted by research groups in partnership with the National Cancer Research Institute UK  25-Feb-2020 2020 PVCR Report_National Cancer Research Institute (UK)


To learn more or get involved, contact: patientvoicecancer@ucd.ie; (+353-1) 716 6308

 

Hosted by: UCD Centre for Arthritis Research
Led by Dr Emma Dorris

Developing patient and researcher partnerships to help us expand our research into a more inclusive and holistic model with the goal of improved research relevance for patients.

To learn more or get involved, contact patientvoicearthritis@ucd.ie

Hosted by: UCD Diabetes Complications Research Centre (DCRC)
Led by Dr Fiona McGillicuddy

Engaging researchers and patient communities to exchange knowledge and information to ensure that our core objectives are guided by patient experience and expectations.

To learn more or get involved, contact:dcrc@ucd.ie