Public Involvement in Privacy (PIP) panel – what is it
and how does it work?
As highlighted in last month’s blog, the PIP panel is based on a model of public involvement that we have adapted from similar gold-standard practices in health and social care research (UK Standards for Public Involvement, National Institute for Health and Care Research (NIHR), 2019):
https://www.invo.org.uk/wp-content/uploads/2019/11/UK-standards-for-public-involvement-v6.pdf
The standards highlight what high-quality public involvement should look like and ensures good practice when involving members of the public in research and a range of other activities. At their very core, the standards recommend involving people with relevant lived experience, and other research stakeholders as partners alongside the academic research team. The PIP panel exists within the AP4L project to ensure that those with lived experience or relevant life transitions are involved from the outset and are meaningfully engaged in helping us to achieve our project outcomes.
Our AP4L team includes a co-applicant with responsibility for making sure that public involvement is integrated into the project (Prof Nick Hulbert-Williams), and a funded researcher to manage this (Lori Wright). We have been leading this work since April 2022 when the project launched, and our work will span until the end of the project ensuring meaningful public involvement will function as a central component of the project throughout. We will ensure that any Privacy Enhancing Technology (PET) tools developed are done so with the end-users needs as a priority.
Recruitment for the PIP panel was done through an application process, which operated via social media. Interested individuals responded to an online survey to tell us about why they wanted to be on our PIP panel. We then selected members in such a way to get a variety of transition experiences and demographic representation – ensuring a breadth of people were included in the PIP panel from an age, geographical, gender and race standpoint.
As a result, our PIP panel is comprised of eight members of the public who each have experience of at least one of the transitions that the AP4L project is investigating: serious illness, leaving the forces, relationship breakdown and coming out as LGBT+. Each transition has two representatives, ensuring a range of experience and opinion.
We meet regularly – every eight weeks. Agenda development for meetings is coordinated and facilitated by Lori, with panel members being given the opportunity to add to the agenda themselves. The agenda is then disseminated to both PIP panel members and AP4L staff, who are invited to attend. Meetings are conducted online, and minutes are generated. Meetings last an hour, and both talk and chat options for inputting are utilised. PIP panel members are paid for their time (£50 for 1 hour). Lori continues to communicate with the panel between meetings and can gain additional timely feedback from members via email when needed.
The first meeting was organised in December 2022, with a primary purpose of introducing the project and helping PIP panel members to get to know each other and start to build familiarity and rapport. The Principal Investigator for the AP4L project (Prof Nishanth Sastry) has been involved in the PIP panel from its first meeting.
Since our first meeting, a further five PIP panel meetings have taken place with full engagement from panel members and the AP4L team. Project developments are brought to the meeting by AP4L staff and are presented in a way that allows full understanding from PIP panel members who are then asked for their thoughts, comments and opinions. Their feedback is then taken away by AP4L staff and incorporated into PET developments within the project. We also seek panel feedback on new research studies that we are developing, and comments on our how we are disseminating and communicating findings from the work to the public.
A later blog will detail the process of the meetings and how
it functions to guide the project and its outcomes, as well as the benefits of
having the PIP panel at the heart of the AP4L project.
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