My name is Lucy Frith and I work at the University of Manchester, and I am a co-applicant on the project. One of my roles is helping co-ordinate the public involvement for this project. In this blog post I am going to tell you a bit about why and how we have organised the public involvement for this project.
At the planning stage of the project, we thought that it was very important to get the views of those who had lived experience of online sperm donation, people who have used online sperm donors to form their families, donor and those running the online sites, really embedded in the project from the start. To this end, we recruited people to be members of our public involvement groups at the start of the project. We now have three public involvement groups representing our three key groups (people who have used online sperm donors to form their families, donor and those running the online sites) and these groups have met a number of times over the last year.
The main job of these groups is to keep us, the researchers, grounded in the realities of online sperm donation. The terms ‘patient and public involvement or public patient involvement (PPI) are commonly used to capture a broad range of activities that aim to develop effective links between researchers and the general public. While public involvement has become a wide-spread phenomenon in health and social care research, it is less often used in social science research but the value of having public contributors involved closely in research projects is increasingly being recognised. Public involvement in research can improve the quality and relevance of the research for the end user, and it is for these reasons why we decided to embed a commitment to public involvement in this project.
Our public contributors have a number of roles in our project. At our first face to face meeting last year, 2022, they played a key part in helping us design the project artwork, logos and look of the project website that you see now. Their feedback on appropriate images, making sure they were inclusive, captured the right messaging for our project were really useful. They have also helped us recruit for the project. They also helped us develop our recruitment material and made sure that all the project documentation, consent forms, information sheets and advertising materials, were clear, easy to read and covered all the important points that potential participants might need to know. This is important as making sure people who participate in research are properly informed about why the research is being done, what participation entails and what the outcomes will be, are all key elements in good ethical research practice.
As we collect our data, our public contributors will be involved in analysing and interpreting our data, and we are planning interactive analysis sessions, so that our understanding of the data we collect can be enriched by the understanding and lived experience of our public contributors. They will also play an important part in how and where we disseminate our findings, so that we are sure that our research outputs will reach the right people. We will also co-create outputs with our public contributors, writing blogs, briefing documents and presentations so that our outputs can be assessable and relevant to all our stakeholders.
To support our public contributors, we are committed to co-learning and co-mentoring amongst the research team and public contributors. In our face-to-face development day coming up this summer, we are planning to do an overview of narrative analysis, a way of analysing qualitative data from the perspectives of the stories told in them, and run a session on how to minimise vicarious trauma from collecting, analysing and discussing sensitive material. These training sessions are for the public contributors and the research team, so we can all develop and learn from each other.
Most of our meetings with our public contributors have and will be run as online video calls. Despite some of the limitations of this way of doing public involvement, we think the benefits have and will outweigh the disbenefits, as this way of engaging has enabled us to get wider participation from people overseas and those with caring responsibilities.
We are looking forward to continue to develop our research with our public contributors and produce outputs that will, hopefully, provide good practice and policy guidance in this area that is based on good evidence.
If you are interested in joining one of our public involvement groups, see the page on our website https://www.theosdproject.com/public-involvement.