"Our local communities are key to successful research”: Meet Maria Piggin

Maria Piggin is partnerships and training manager at the NIHR BRC Imperial Patient Experience Research Centre. Here, she discusses the importance of involving patients and members of the public in research and the positive impact of lived experience on research.

Tell us about the NIHR BRC Imperial Patient Experience Research Centre (PERC).

PERC is a core facility of the NIHR Imperial Biomedical Research Centre (BRC), a translational research partnership between Imperial College Healthcare NHS Trust and Imperial College London.* Some of our team undertake ‘research on research’ and some support NIHR Imperial BRC researchers to involve patients and the public in shaping and designing their health research to ensure it meets the needs and priorities of the North West London population.

Tell us about your role at this centre as Partnerships and Training Manager.

I manage a team of four public involvement and community engagement officers who support the NIHR Imperial BRC researchers across 14 research themes to meaningfully involve patients and the public in their research. We support researchers to do this including facilitating public involvement activities and participating in community outreach opportunities so health researchers can build trust and relationships with the population they serve. We also manage and support a group of approximately 75 Community Partners who are part of 15 steering groups across the NIHR Imperial BRC’s research themes and PERC and involved in all the governance activities of the NIHR Imperial BRC. Our team also co-delivers training (with Community Partners) on involving patients and the public in research to Imperial College London students and healthcare professionals.

What are some of the main training principles that you give to researchers wanting to involve patients and the public in their research?

The main principles are understanding that

  • public involvement in research is part of their role as a researcher, integral to undertaking research and can’t be delegated to someone else
  • researchers are in a position of privilege and have an obligation to address the important issue of underrepresentation in research by Black and ethnic minority communities as well as other under-served groups. This includes building relationships with groups affected by their research areas as early as possible e.g.this could be a community where a condition is more prevalent or a patient group or charity. These relationships can’t be delegated as they are about trust and unfortunately researchers and research institutions are not always trusted so approaching people when you need something from them won’t work. Reciprocity is key.

What are the benefits of actively involving patients and the public in research?

Research which addresses unmet need identified by those living with a condition avoids wasted research. Involving all stakeholders from the start (or even before the start of a project so you are sure you are researching the right question), makes for more impactful research. All other service/product developers ask their customers what they want/need so why is research any different? Those involved in research can advise on recruitment and retention to studies, lobby for implementation of research findings or further studies and use their own professional skills and networks to add value such as through links to possible funding options.

Do you have examples of how patients and the public have positively impacted on research?

Our PERC blog has lots of great examples across all different kinds of research. We partnered with Mosaic Community Trust to conduct research into attitudes towards vaccination of under five-year-olds. We found that low vaccine rates were not usually because of vaccine hesitancy but related to logistical issues of accessing vaccine appointments, needing time to ask questions about the vaccine and its impact and needing a private space to breastfeed an unsettled child after having a vaccine. Read more about this project.

Following consultation with a woman living with breast cancer-related lymphoedema, a group of engineers developed a device to help prevent this condition. This is another example of how lived experience has impacted research. Read more about this project.

How do you see patient and public involvement and engagement (PPIE) developing in the future?

My hope is that in future when research is first mentioned to students, the definition will include that it is always conducted in partnership with those who will be affected by it and that these relationships between the researcher and patients/the public need to be formed long before a funding application is drafted. I hope this will lead to demystifying research and researchers for the benefit of the public and that researchers will be less hesitant to let patients and the public into their world. Community outreach is key – for our population to understand that they are central to successful research which will ultimately benefit them, they need to see us in their communities as often as possible.

What have been some of your career highlights to date?

Although the inclusion of steering groups of Community Partners (without prior research or public involvement experience) across all the NIHR Imperial BRC research themes is fairly ambitious and a lot of work, it is inspiring to work with such motivated and enthusiastic individuals who we hope will help us extend our reach into communities we don’t yet have relationships with. It was also very humbling to receive the Imperial College Medal this year for my work in public involvement in research.

Who inspires you at work?

Having recently had a lab tour at the Hammersmith campus, I am in awe of the researchers who spend hours seeking new knowledge to address health conditions and treat patients in lab settings.

*NIHR Imperial BRC was awarded £95m in 2022 to continue developing new experimental treatments and diagnostics for patients. Find out more.