The Importance of Patient and Public Involvement in Research
Patient and public involvement (PPI) in research is important, challenging and rewarding. It can improve the quality and relevance of research as PPI representatives bring a different perspective to the study. Asking research questions that patients see as priorities, and co-designing approaches that the public and patients are more likely to engage with, all help research to have more impact. In 2019, PPI was becoming more commonly recognized to include in research and the University College of Dublin’s Ocular Pharmacology and Genetics Group (UCD OPGG) decided it was time to see the full benefits of this.
Many people think that PPI is solely having members of the public or patients working alongside research teams to gather and interpret data. However, in my opinion, to fully incorporate PPI into the research cycle, it’s important to implement PPI from the planning stages of research and be intertwined throughout the project. What we define as PPI, is a way to ensure that researchers ask the right questions and in a way that the public and patients understand, as well as making sure that the people participating in and affected by our research are approached in the right way. PPI does not include the use of people as participants in research and does not provide data for individual research projects. Additionally, PPI is not an attempt to make amateur scientists out of lay people. It is research coordinated with patients rather than to or about them. It is the concept of involving people, who are not scientists, in the research and seeking their input to shape and guide it. It is about moving their role from participant to partner; for patients often have a great understanding of the need for research at all stages of the spectrum, from basic to applied.
The OPGG-IRD-PPI panel was established in 2019 and was set up with help from Fighting Blindness. The panel is comprised of seven people living with an inherited visual impairment or their family member and four UCD OPGG researchers working on IRD. Currently, the four researchers are my principal investigator (PI) and three PhD students including myself. The panel has been working together to capture the perspectives of the PPI representatives and assist us in making decisions on future research.
The members of our group bring their lived experiences and substantial knowledge pertaining to the priorities of Irish patients with inherited sight loss. By collaborating, the aim of the panel is to make our research more relevant to society in order to make a bigger impact on a patient’s quality of life. To ensure our research projects generate meaningful outcomes for people living with sight loss, our UCD research group ensures PPI contributors are involved in all aspects of the research project, from writing the grant application to dissemination of results. For new research proposals, we have strived to implement a two-way partnership between the researchers and PPI contributors in deciding research priorities, project management and dissemination. Our main goal is to implement beneficial PPI activities that will enhance the quality of our research.
All our IRD research outputs, including theses and article publications, are discussed with the PPI panel. We then work together to define how to circulate the key outcomes to the public in a lay manner. Such communications thus far have included lay abstracts for theses and publications, in addition to coordinating nationwide and online press-releases for research publications.
An example of the work carried out by the PPI panel include assisting in drafting a lay abstract for a 2020 publication on IRD research in the Journal of Biological Chemistry, Non-photopic and photopic visual cycles differentially regulate immediate, earl, and late phases of cone photoreceptor-mediated vision. The abstract successfully explained the aims and achievements of the research in lay terms, taking a complex subject called the visual cycle, and making it comprehensible to all. The IRD PPI panel also co-wrote press releases, such as Shedding light into molecular mechanisms on how the protein RAB28 is involved in inherited blindness, which aimed to boost the reach and impact of our publications. The researchers and PPI panel drafted an engaging descriptor of the research project, leading to increased coverage of the research and greater understanding amongst the IRD patient community. Additionally, the panel have worked closely with individual OPGG researchers to provide feedback on lay abstracts and research presentations. Such input, which is beneficial to early career researchers, allowed the scientists to hone their writing and presentation skills.
When I mentioned to the group about writing this blog, I asked them for some quotes on their experience and opinions on how our PPI panel works, including what they initially expected. The responses varied, but the most notable was that before the group was initiated none of them understood how long research takes, and why it can take 20+ years for therapy development. Being part of the panel has “humanized the research”, a member expressed to me Another member noted how patients needed to be educated on the benefits of PPI, and whilst the research being discussed may not directly affect them, “it may well benefit the field as a whole”. The overall opinion of the panel, “why would patients not want to get involved?”
I believe that being a part of the group has benefitted our research group enormously. Although my project is categorized as basic cellular and molecular biology, interacting with the panel has emphasized the potential downstream impact of the research we undertake at the laboratory bench. It has also stressed the significance of being able to effectively communicate the goals and outcomes of our basic science to those it matters the most, the patients. It has helped me improve my lay communication greatly too. I now can describe my project without using scientific jargon and I feel confident explaining my research to all audiences. Additionally, several of our research projects became patient-focused with gene variants associated with IRD as central elements. We have even started to include a PPI panel member on our interview boards for hiring new researchers.
To me, the significance of the panel and its benefits were especially highlighted throughout the Covid-19 pandemic when both patient advocates and researchers were keen to remain involved. Although the panel meetings changed from in-person to virtual via Zoom, the enthusiasm of the panel members never waned. The panel members are always delighted to hear how our research is progressing, and many send personal correspondence and congratulations when they hear via social media of any accolades that researchers in the group have been awarded. Furthermore, with each meeting we, the researchers, always discover additional meaningful information from the panel. For example, in one meeting where we discussed each panel members' condition and gene mutation, if known, it made us realize that we have much more work to accomplish as researchers. This meeting also highlighted how much the panel wanted us to succeed with our research goals. In 2019, I joined the PPI panel when my PI asked me if I would like to be involved. Since then, it has been fantastic to see how the working relationship of the panel has grown.
If this blog has given you inspiration to set up your own PPI panel, let us provide you with one key piece of advice: just get started. Send an email to your associated research charity organizations and publicize the opportunity on social media platforms. You will be glad that you did.
Not sure yet? Feel free to contact me at firstname.lastname@example.org if you want to learn more or have further questions. Watch the video below to learn about our shared PPI experiences.