Patient & Public Involvement (PPI)

HRCI and our members sit at the interface of the health research community and the general public. Many of our member organisations were started by, are currently run by or heavily involve people affected by illness.

They work daily to shape the research agenda in more ways than you can imagine, including through funding research, organising research conferences, developing patient registries, shaping care based on evidence and supporting clinical staff to carry out research.

They also play a very important role in highlighting patient perspectives on research and in ensuring that the patient voice is central to all decision making about health research. For these reasons, PPI is a very strong focus for HRCI.

We work to improve PPI in Ireland in the following ways:

  • Supporting our members in their activities to involve patients, through the HRCI PPI Shared Learning Group
  • Organising meetings and conferences on the topic
  • Being involved in national PPI initiatives, including three of the five national PPI Ignite awards and a Clinical Research Coordination Ireland (CRCI)-led Clinical Research PPI Working Group
  • Working with the Health Research Board to including PPI in the Joint Funding Scheme process
  • Producing PPI tools and templates
  • Participating in a UK group of medical research charities involved in PPI

 In September 2018, HRCI (then MRCG) published ‘Developing a PPI Strategy: A Guide’ which provided practical advice on developing a patient and public involvement (PPI) strategy for research activities.

HRCI Member Stories

The All Ireland Institute for Hospice and Palliative Care (AIIHPC) is a leading charity organisation in the area of hospice and palliative care. It serves as a collaboration of hospices, health and social care organisations and Universities in Ireland. Their main aim is to advance education and research to improve the quality of palliative care treatment for people living with life limiting conditions.

The All Ireland Institute for Hospice and Palliative Care has a well-established group through which service users and carers bring their views and skills to comment on the work of AIIHPC and the wider palliative care community in palliative care education, research, policy and practice. A think tank of stakeholders helped inform AIIHPC for setting up the group which was established in 2013. The group is called Voices4Care and it currently has 42 members. All its members provide a service user/carer and interested citizen perspective, in addition to there being a sub-group specifically for members who have an interest in palliative care research.

 

The Irish Cancer Society was established in the 1960s by a physician hoping to improve the quality of care for patients suffering from non-melanoma skin cancer. The charity is now the leading voluntary funder of cancer research in Ireland, receiving over 90% of their funding from volunteer activities. The charity also provides support to patients and families that have been affected by all types of cancer.

 

The Irish Cancer Society held a meeting of stakeholders on May 10th of this year. The aim of the multidisciplinary meeting involving patients, clinicians, professionals and scientists was to discuss the possibility of a third collaborative research centre The meeting was held before any call for proposals were made. The Irish Cancer Society recruited a number of patient stakeholders, including approximately 10 of their existing volunteers with personal experience of cancer between the ages of 40 and 70. They were invited to give their opinion on how to guide and shape the new research centre. The charity received extremely positive feedback from the patients and the other professionals that attended the meeting. The meeting was the first of its kind but is paving the way for further collaboration within the charity.

 

MSD Action Foundation was established in 2015 by parents Michelle and Alan Finglas after their son Dylan was diagnosed with Multiple Sulfatase Deficiency (MSD). The charity is exclusively volunteer run with Michelle, Alan and the directors playing pivotal roles. All funds raised go to the research translational potential to treat or cure MSD. The charity aims to provide the best possible chance to patients that are suffering from MSD.

 

The MSD Action Foundation are currently working with the leukodystrophy centre in the largest children’s hospital in the world- Children’s Hospital of Philadelphia (CHOP) to complete a natural history study. The study follows the normal disease progression of approximately 20 children living with MSD. The charity plays a key role in making patient families aware of the research study at CHOP. They also see the importance of educating patient families on the potential benefits of the study. The charity hope to use the study to fulfil FDA criteria to enter clinic. They see this as a critical element to bring successful safety and effective research from bench to bedside which could provide life- saving treatment for children effected by this rare genetic condition.

 

Fighting Blindness is an Irish patient-led charity funding world-leading research into treatment and cures for blindness. In parallel, the organisation provides a variety of support services while also empowering patients and families affected by sight loss through education.

 

To inform the development of their new research strategic plan, Fighting Blindness launched a survey in 2018 to capture the research priorities of those living in Ireland with sight loss. With questions, that covered every aspect of the research process from basic science, translational research and social science, over 260 people affected by sight loss had the chance to share their opinions on what is relevant and matters to them most. The most significant finding revealed that 92% of those surveyed looked for a focus to be placed on therapies that has the potential to slow down, stop or reverse the progression of disease. Also emerging strongly from the feedback, was the need to pursue research that identifies the impact of day to day living with a visual impairment. Demonstrating meaningful public and patient involvement in research, this initiative contributed to the development of a three year research strategic plan that reflects the voice of the sight loss community in Ireland. Additionally, the important feedback received will also serve to shape future research communications and to inform advocacy campaigns around improved services and better access to treatments.

 

Link to Irish Government websiteLink to Pobal websiteLink to Health Research Board website

Link to Irish Government websiteLink to Pobal websiteLink to Health Research Board website