PPIE in Research (CRF York Conference)

Public and Patient Involvement and Engagement (PPIE) is a unique and dynamic approach to healthcare development that has the potential to bring a range of benefits to patients, professionals, and society as a whole. PPIE refers to involving patients and the public in the planning, design, delivery, and evaluation of healthcare services, research, and policy-making.

The benefits of PPIE specifically in research are numerous and diverse, and they can have significant impacts on the outcomes and quality of the applicability of health intervention research programs. A recent event about PPIE was organised by the members of the Department of Health Science’s Contract Researchers Forum (CRF) at the University of York. The event brought together an exciting group of healthcare researchers and practitioners who shared their experiences and tips for conducting PPIE in health research. 

What struck me foremost, apart from the wonderful diversity of study topics that were shared, was that all the attendees were unanimous about involving patients in the planning and evaluation of research. This could arguably result in healthcare providers gaining valuable insights into patient needs, preferences, and priorities. To support healthcare researchers to tailor their studies to better meet the needs of patients, and improve patient satisfaction and research outcomes, the main takeaway from this event was the need for researchers to be mindful of avoiding tokenism. For example, Dr Wendy Burton spoke about the PPIE work she conducted for HENRY, an 8-week parenting programme providing lifestyle advice about eating habits, being active and nutrition, with the aim of reducing obesity in children. Wendy avoided tokenism in her research by involving parents in the research throughout the duration of the study and involving them in decision making and interpreting the results, building relationships with the parents as well as making PPIE meetings accessible and fun.

Jen Brown also provided valuable insights into her PPIE work conducted as part of the DIAMONDS project. Jen shared her “top tips” with attendees, including investing effort into supporting the involvement of neuro-diverse participants in the project; listening to participants, personalising relationships and making participants feel a part of the research study. Jen offered ways to involve PPIE members throughout the project by sharing results, celebrating milestones and personalising communication with patients.

Another highlight from the talks was that PPIE has the unique potential to promote transparency as well as accountability in health research, and a part of this is ensuring the use of accessible language to communicate with patients and the public. Recommendations by Karen Glerum-Brooks of the National Institute of Health and Care Research (NIHR) - Research Design Service (RDS), highlighted the importance of using jargon-free language when designing research projects. This may help patients to make informed decisions about whether to take part in research, their care and be better informed about their options.

Philip Kerrigan and Simona Manni shared an example of how to of approach PPI in new and creative ways. The Unlocking Nature project brought to light the wonderful dynamism of research by practice. Unconventional perhaps but the project provided recorded materials which demonstrated its positive effects on participants and stakeholders. An interdisciplinary research approach that becomes a creative adventure for the participants where they can express their feedback through novel media films, and not limit research to the standard ‘people around tables’ format. In this way researchers can explore new approaches without losing the opportunity to connect with participants. The participants were encouraged to think 'outside the box' by exploring their lived experiences from various viewpoints brought together by a common media-led output goal - short films that blended the research data with participant artistic expression.

In summary, the CRF event highlighted the diverse and unique approaches to PPIE and how PPIE can support the development of new treatments and therapies that better meet the needs of patients. Democratisation inherent in PPI seems to be effective in promoting quality and transparency, where roles and hierarchies between researchers, patients, stakeholders and healthcare executives could be obscured.  By involving patients and the public in research and development, healthcare professionals can gain valuable insights into patient experiences and needs, leading to the potential development of more effective treatments and therapies.

To find out more about the Department of Health Sciences Contract Researchers Forum, go to (add link to website) or contact the Co-Chairs of the CRF - Dr. Emily Peckham (emily.peckham@york.ac.uk) and Dr. Stephanie Bramley (stephanie.bramley@york.ac.uk).

Cristobal Catalan