Role Description of PPI Representative in Centre for Experimental and Pathogen Host Research (CEPHR)

Background

Clinical research aims to help improve health and wellbeing 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.

Established in 2019, CEPHR brings together researchers and research groups from across UCD who focus on infection-related research.  CEPHR members comprise clinical, translational, statistical and biomedical researchers working interactively on aspects of host and pathogen research. Such areas of research activity include studies on COVID-19 pathogenesis, vaccination as well as HIV research. This document sets out the roles and responsibilities for the PPI Representatives who work in partnership with CEPHR to implement Patient and Public involvement in its research activities.

What is PPI?

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. Something that they all have in common is that they are passionate about getting more people involved in research so that we can develop better care and treatment for everyone.

PPI representatives volunteer their time to help spread the word about health and care research to patients and the public, and especially those groups who are currently less likely to take part in research. They also help research and healthcare staff understand more about the experiences of those who take part in research.

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.

Responsibilities

A PPI representative is invited to be a part of CEPHRs’ research activities to lend his/her individual perspective as a person living with HIV (PWH). A PPI representative may be asked to: 

  • attend meetings of committees/groups 
  • review research documents 
  • take part in research steering groups 
  • respond to consultations 
  • undergo relevant training 
  • assist researchers with grant applications 
  • assist with PPI training for researchers

Through these activities he/she may be asked to give views on the:  

  • topics researchers are studying 
  • research questions they are asking 
  • wording of patient information sheets 
  • methods of recruitment of patients or clients to research studies 
  • burden/impact of a participant taking part in a study 
  • the way in which the research findings are being shared

Support

CEPHR will ensure the provision of an ongoing programme of support for PPI participants which will be tailored to individual needs. This may include: 

  • a named point of contact 
  • induction 
  • mentorship 
  • training e.g. in the research process/being heard 
  • travelling expenses and subsistence 
  • written guidance 
  • visits to Research Centres 
  • other activities identified by PPI representative

Duration of the role

  • There is a requirement to attend 2 meetings a year which will be held in person.
  • We may ask you to read and review the study documents, offering advice on the aspects that you think are important. We would expect this to take no longer than 1 hour.
  • The term of involvement we require is three years for this particular role; however if you are willing to contribute on future projects, the term of the role could be extended. 

Person specification

Patient representatives should have experience, knowledge or interest as 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 and express views in a polite but effective manner 
  • 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

Contact Details

  • We wish to recruit 8-20 members of the group for each meeting to provide support and advice. 
  • Dr Rachel MacCann is the PPI programme developer and can be contacted through the department on rachelmaccann@svhg.ie 
  • Dr Polina Smolovyk is the point of contact for PPI administration and PPI liaison officer and can be contacted through the department on polina.smolovyk@ucd.ie
  • Training and access to resources such as terminology glossaries will be arranged as appropriate 
  • Regular updates or feedback will be provided on a regular basis as we value your commitment and participation
  • Payment will be provided for time given per session and travel reimbursements will also be provided. Refreshments will be provided where appropriate.
  • Child and carers care cover is not available.

Considerations before applying for the role: 

  • You will also be asked not to disclose any confidential information and to sign a Code of Conduct before participating. If unsure over confidentiality issues, this should be discussed with Dr Polina Smolovyk. 
  • Do you have the time to be involved?
  • What do you wish to achieve by being involved?
  • What support would you require?

 

Thank you for your support.