Clinical Research PPI Working Group

CR PPI Working Group

Clinical Research PPI Working Group (CR-PPI-WG)

Since 2016, HRB CRCI has partnered with IPPOSI on the topic of patient and public involvement (PPI) in clinical research leading to the formation of a Clinical Research PPI Working Group (CR-PPI-WG)

Background

In February 2016, HRB CRCI and IPPOSI invited clinical research entities and other stakeholders in clinical trials, including industry representatives and patient advocacy groups, to nominate a representative to be part of the Clinical Research PPI Working Group (CR-PPI-WG). The initial aims of the group were to assess the readiness of the stakeholders to engage with PPI, to define a common understanding of PPI and to develop a network of shared learning about PPI among all stakeholders, but in particular, among the Clinical Research Facilities/Centres.

What do we mean by ‘patient and public involvement’ (PPI) in clinical research?

In general, PPI in research means research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. (INVOLVE definition – http://www.invo.org.uk)

From a clinical research perspective, this is distinct from, though clearly related to, work that is done to raise public awareness of clinical research and to increase participation in clinical trials. Thus, ‘actively involved in clinical research’ means (for example) activities such as where patients and members of the public:

– help to decide what will be researched

– are involved in developing a grant application

– provide early input into the design of clinical studies

– are members of a clinical study steering committee

– work with researchers to develop patient information material

 

What it is not?

PPI does not include the recruitment of study participants. This is participation of the public rather than involvement.

PPI does not typically include work aimed at raising awareness among the public around research, such as media publications of research findings, and outreach activities such as open days in research facilities. This can be described as engagement, not as involvement.

However, in order to encourage patients and the public to take part in research and /or PPI actions, some engagement activities are required.

Mission

The mission of the CR-PPI-WG is to facilitate cooperation and sharing within the member organisations with respect to PPI knowledge, resources, training and innovation, to ensure that:

  • The leaders of clinical research in both academia and in industry become PPI champions in their organisations
  • The voice of the public and patient is included in a meaningful way across the full research cycle of all clinical research conducted in Ireland
  • Duplication is avoided and available resources are maximised
  • Public and patient members of the WG have a strong influence over how the WG operates

Work Group Structure and Membership

The group is coordinated by a Chairperson, supported by a Deputy Chairperson. The group meet 4-5 times per year. Individual members of the WG take responsibility for specific, defined tasks to be completed outside of WG meetings. The CR-PPI-WG agree on an annual work plan for each year. Each member organisation will cover any costs associated with participation in CR-PPI-WG, including telecommunications, travel and subsistence.

Members of the group can be from:

  • CRFs/CRCs
  • Clinical research networks / other academic research entities
  • The HRB, HRB CRCI and IPPOSI
  • Patient organisations with an interest in connecting with researchers
  • Commercial companies involved in clinical research
  • Members of the public interested in contributing to research

How to get involved?

To express interest in joining the group please contact the Chairperson or  Deputy Chairperson:

Chairperson:

Edel Murphy, Development Officer, HRB Primary Care CTNI.

Email: edel.murphy@nuigalway.ie

Deputy Chairperson:

Eilis O’Toole,  Clinical Research Nurse, Wellcome Trust HRB Clinical Research Facility at St James Hospital.

Email: eiotoole@tcd.ie

Members of the CR-PPI-WG include: