Patient and Public Involvement and Engagement (PPIE) in

research

Magdalena Skrybant, PPI AdvisorNathalie Maillard, Head of Programme

Delivery (Operations)

01/05/2023 CLAHRC West Midlands

CLAHRC West Midlands

Patients andthe public

Health & social care staff

Applied healthresearchers

The Collaboration

CLAHRC West Midlands

Impact of PPI on research

“No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost-effective.”

Professor Dame Sally C. Davies Chief Medical Officer, Department of Health

CLAHRC West Midlands

PPIE in CLAHRC

Active Partnership: “Doing research ‘with’ or ‘by’ the public, rather than ‘to’, about’ or ‘for’ the public”.

INVOLVE, http://www.invo.org.uk/about_us.asp

• PPIE advisors in each theme• PPIE advisors at each level in CLAHRC WM model• Selection process• Advisors from different backgrounds• Advisors with wealth of skills/knowledge/experience

CLAHRC West Midlands

PPIE in implementation

• Formulating research ideas – are the right questions being asked?• Supporting research bids/grants – PPI often a requirement• Reviewing/designing research – e.g. Designing questionnaires• Reviewing patient/public facing research literature• Contributing patient experience: what are the challenges/what works

well• Data collection – patients/public as researchers• Aware of networks that are useful with recruitment to studies• Helping disseminate research results. What is best way to

communicate the messages?• Evaluating PPI engagement – how can we do it better next time?

CLAHRC West Midlands

PPIE implementation

“Service user involvement in research means more than asking people to share their views on a particular topic or issue. Service users can also be involved in planning or making decisions about the research itself, in undertaking research and in evaluating research. Involving service users as active partners in these processes is thought to achieve better quality research, which might lead to better quality health services.”

NHS Service Delivery and Organisation R&D Programme. Department of Health, October 2006.

CLAHRC West Midlands

My PPIE experience

• From a research background (Polish history) : wanted to ‘give something back’

• Have several long-term, chronic conditions: wanted to ‘give something back’

• Became involved in CLAHRC BBC• Invited to be co-applicant on CLAHRC WM bid. Attended interview

after shortlisting.

oCommenting on bids – are researchers asking the right questions?oCommenting on research design oCommenting on draft reportsoSystematic ReviewsoDisseminating findingsoInterview panels

CLAHRC West Midlands

Exploring Impact (Staley 2009)

In a structured literature review of 89 papers PPI reported to:

• Help increase recruitment to all types of research• Particular value in qualitative research where participants asked to

share experiences• Particular value for clinical trials, helped improve trial design and

ensure use of relevant outcome measures• Frequently reported to benefit people involved

CLAHRC West Midlands

PPI Governance & Structures

CLAHRC West Midlands

PPI Internships

Consultation with PPI Supervisory Committee

A 3-pronged approach agreed:1) Organise 1-2 days during any given month where PhD student with

shadow someone in health and social care organisations who has a role in PPI

2) Link to a PPI Advisor as ‘buddy’ – PPI Advisor to provide their own insight on their role and challenges they face as PPI Advisor

3) PPI advice on PhD work can be brought to the PPI Supervisory Committee as required – PhD student would receive feedback from PPI Advisors on a specific part of their project

CLAHRC West Midlands

PPI Training

• NIHR Trainee PPI working group – developed a training module for healthcare professionals and

researchers – provides evidence of the impact of PPI on research activities– we need your help to pilot the tool

CLAHRC West Midlands

Further Information

Website: www.clahrc-wm.nihr.ac.uk

Twitter: @CLAHRC_WM

Sign up to our News Blog: http://eepurl.com/OMOEP

Email: n.maillard@warwick.ac.uk

This work was funded by the National Institute of Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care West

Midlands (CLAHRC WM). The views expressed are those of the author(s) and not necessarily those of the NHS, NIHR, or Department of Health.