Public & Patient involvement in CEPHR Centre for Experimental Pathogen Host Research.

Clinical research aims to help improve health and well-being by increasing our understanding of the diagnosis, treatment and prevention of disease. Patient involvement is the creation of a partnership between patients, members of the public and researchers to try to make the research process more effective.

Patient and Public Involvement (PPI) refers to patients, service users, carers, families using health and social care services, people with lived experience of health conditions (who may or may not be current patients), patient advocacy organisations, and members of the public.

The National Institute for Health and Care Research (NIHR) define public involvement in research as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”. Examples of public and patient involvement activity include working with researchers to develop or comment on research materials, providing advice as members of a project steering group, and undertaking elements of research e.g. conducting interviews with participants.

CEPHR wishes to create a new PPI group to engage with and support the research they are conducting. This new PPI group wishes to recruit new participants, primarily people who engage with the Infectious Diseases services.

What you contribute as a PPI representative can be shaped around your interests, skills and time. Some commit to regular activities while others may volunteer as opportunities arise.

Research activities for PPI involvement

Given the broad and diverse research activities being carried out by CEPHR, we anticipate several research activities  that would either directly involve people or facilitate their involvement in activities such as: 

• Exercises to identify and prioritise the types of research that will be supported by CEPHR
• Co-designing research projects and proposals
• Reviewing research grant proposals
• Participating in research project steering groups 
• Reviewing clinical trial protocols or study information for participants 
• Collecting or interpreting data
• Disseminating or implementing research findings

Become a PPI participant with CEPHR

If you wish to become a part of our team as a PPI participant, we are looking for representatives that have experience, knowledge or interest in any of the following:

• As a patient or someone engaged in medical services with the Infectious Diseases department.
• As a family member or carer of a patient
• As a member of an organisation that represents patients and public interests in issues relating to Infectious Diseases.

Essential Attributes 

• an ability to listen to others 
• interest in and commitment to improving health and social care 

Desirable Attributes

• knowledge or experience of a specific illness or social care context 
• confidence to discuss issues with health and social care professionals 
• knowledge or experience of the research process 
• experience of taking part in meetings or panels 
• experience of reading documents and providing feedback

Support for PPI

CEPHR believe that people who engage with the Infectious Diseases services should have a guiding voice in shaping our research. PPI involvement will ensure that the research we conduct reflects the needs of patients and service users, thereby helping to ensure that our work has impact.

We value the professional experience and time that you will give to us as a PPI participant, and we will offer payment for your time as well as reimbursements for any travel costs. 

Contact

If you wish to become a PPI participant for CEPHR, please contact us at Rachel.maccan@ucdconnect.ie to find out more.