Patient and Public Involvement (PPI)

Groups: Is there a right or wrong model?

The principle function of this group is to represent the views of an increasingly aging

population, with a membership comprising academics, representatives of local organizations

including Age UK, Alzheimers UK, LINks, Polish communities to name a few, and service

users and carers.

Researchers bring projects to the group for input and assistance and there are opportunities to

join project teams or as in the case of the Emergency Department generate a PPI group to

oversee the project and become integral to the research process.

Information can be relayed via the representatives to the organization's membership providing

access to a wider population and their perspectives.

This group has had significant impact on projects and ensures that the voice those directly

affected by services is heard.

LNR CLRN Age and Aging PPI Forum

This is a summary of independent research funded by the National Institute

for Health Research (NIHR)’s [name of research programme] Programme.

The views expressed are those of the author(s) and not necessarily those

of the NHS, the NIHR or the Department of Health.

Paula Wray, PPI Lead Special thanks to all the members of the Age and Aging Speciality Group supported by Simon Conroy and Aidan Dunphy and the

LNR CLRN and the Cardiac and Pulmonary PPI Group supported by Theresa Harvey-Dunstan and Gemma McCarthy and the LNR

CLAHRC

Group of service users that have been through cardiac and pulmonary rehabilitation, healthy

individuals and clinical staff. Dynamic meetings reflecting real engagement with the exchange

of information, value, and control between increasingly equal partners.

Members all bring their experiential knowledge but also a diverse array of skills which results

in a group whose value is greater than the sum of its component parts.

Individuals are:

• Assigned to individual project teams as full members

• Able lead on own initiatives

• Have significant input into project development and outcomes

Rehabilitation Theme PPI Group

Both groups have shown significant impact on project design and direction.

Emergency Care of Older People Programme Grant – PPI Co-applicants

and PPI group members integral part of research team, influencing methods

and focus, a role that will supported to develop further.

Activate Your Heart - online rehabilitation programme PPI input resulted in

an accessible workable format that provides individualized programme of

support and empowers patients to take responsibility for their own

rehabilitation and lifestyle choices.

Provide mechanisms for the dissemination of research information.

Newsletter – Best Foot Forward produced by the group

Website - developed to improve engagement and utilizing the skills of a

group member

Feedback to community groups – Dementias & Neurodegenerative

Diseases Research Network (DeNDRoN) Brains for Research initiative,

increasing recruitment

Both group offer members

Mentorship and support

Reimbursement for expenses

Peer support

Training opportunities

Roles and Outcomes

Principles for PPI Groups

In conclusion the groups both have the shared goal of ensuring

that the patient and public perspective is not only heard but

listened to and acted upon. In different ways, they provide a

forum where research projects can be presented and at which

a greater range of perspectives can be considered.

As with all PPI any group established should not be too

prescriptive, rather allowed to evolve and capitalize on the

strengths and skills of its composite members, including;

academics, clinicians, patients and public. There is not a set

model rather principles that will provide the foundations for a

group along with sufficient support to fulfill their role including

the provision of a PPI friendly environment with opportunities for

real engagement and involvement.

PPI Forum Patients

and Public Representa

tives

Researchers & Clinicians

Service Users and

Carers

Wider Population

Community Groups

• Topical

• Geographical

• New Research

Ideas

• Design Input

• Review Draft

Proposals

• Patient Information

• Representative

Voice in Research Meetings

• Active

Involvement in Dissemination and Implementation of Results

PPI Group

‘Not just consulted but really involved!’

‘Help others through

what I had been

through’

‘Gain knowledge that is reliable and

increase my confidence’