Patient Public Involvement: what it is and why it matters in the context of dialogue

Patient Public Involvement (PPI) is a type of work that involves an active engagement of service users, carers and the public in the planning, commissioning, conducting and evaluation of research. This simply means giving voice to people, either patients or the public to be heard, ensuring that their views, knowledge and experiences are listened to when developing and designing research strategies and proposals. The INVOLVE as part of the National Institute for Health Research has defined PPI as research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This definition includes research funders and health and social care professionals who design and do research so as to ensure perspectives of the public as reflected in research.

The aforementioned discussion brings us to the importance of understanding public needs when planning for research bids and conducting projects, which is potentially the core concept in dialogues. Dialogue is an essential part of our everyday lives and so are PPIs, which involve productive conversations between professionals and the public that help to meaningfully bring up their actual needs on the table e.g. equal access to health care services and address them using pioneering modes. This is theoretically a sound method to reduce the challenges in today’s hectic world.

Here I wish to mention some of my personal experiences with a PPI session, conducted as part of a research bid, in a small community of migrants from Iran living in the UK, Dorset. There have been a growing number of migrants from Iran to the UK in the last decades and they are a very understudied population. These migrants are among the ethnic groups that are not recognised by the UK census data and many identify themselves as Asian or as belonging to other backgrounds. I was basically interested in knowing:

  • How being a part of this community affects help-seeking behaviour for mental health and well-being services
  • What is the awareness about mental health issues and the stigma related to these problems

Participants in this PPI session stated that there is a fear of expressing their identity in Iranian migrants even in British-born individuals and therefore their original identity is mostly ignored and/or denied which is a great stressor. Thus, this factor could greatly affect their help-seeking behaviour where they feel they can be misunderstood and/or judged and also, there is stigma related to mental health problems. The PPI session also identified literacy about symptoms of mental health problems and language barriers as the two other main factors that could affect seeking help from the related services for these conditions. This is a great example of how having interactive conversations with the public can help researchers in directing and planning their research. In this case, there is a need to improve health literacy in this population of migrants as well as improving the knowledge of health service providers of cultural needs.

In conclusion, PPI makes planning and conducting research more public and/or patient-oriented. It is, therefore, a novel way of empowering patients and the public and thus, transforming the lives of individuals and groups through research. Professionals need to be more resilient in their research and keep interactive conversation with patients and the public in order to address research needs that will improve the quality of life of individuals and at a wider glance our society.

Dr Mariam Vahdaninia

Dr Mariam Vahdaninia

Independent Researcher

Dr Mariam Vahdaninia obtained her MSc (Epidemiology) and Ph.D. (Health Sciences) in the UK. She is a Post-Doctoral Research Fellow and is currently an independent researcher. She has conducted a number of researches on population health and public health topics and has a special interest in the health promotion of migrants in the UK

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