Public trust at the heart: How the SACRO project is working with key stakeholders and the public to enable safer and faster output checking in sensitive data research
Public trust at the heart: How the SACRO Project is involving key stakeholders and the public to enable safer and faster output checking in sensitive data research
Imagine you’re a researcher, sitting in front of a computer with a steaming cup of coffee in your hand. You’ve spent hours, days, weeks, even months poring over sensitive data, trying to glean findings that could make a difference to the world. But before you can release those findings, you have to navigate the labyrinthine process of checking for any potential breach of data confidentiality. It’s time-consuming, it’s complicated, and it’s costly. Enter the SACRO project.
Peeling Back the Layers of the SACRO Project
The SACRO project is one of the five DARE UK Phase 1 Driver Projects. Its mission? To create semi-automated tools that can assess the risk of disclosure in research outputs. The aim is to reduce the delays and costs associated with releasing research results from Trusted Research Environments (TREs). The SACRO project promises a future where researchers can share their findings more quickly and cost-effectively without compromising data confidentiality. But a project of this magnitude doesn’t exist in a vacuum. It requires input, collaboration, and feedback from various stakeholders, including the public. This is where Public Involvement and Engagement (PIE) comes into the picture, playing a pivotal role in shaping the project from its inception to its midway point of delivery.
In addition to involving the public throughout delivery, the SACRO project’s PIE strategy set out to achieve two primary outcomes: a literature review consolidating existing public engagement work related to output checking and a consensus statement from key stakeholders and the public outlining principles for output checking. These outputs informed the project’s direction and future related projects within DARE UK, advocating consistency in output-checking processes.
The Early Days: Fostering Public Engagement
When the SACRO project first took flight, the team recognised the crucial role the public could play in its development. They understood that public input would not only enrich the project but also ensure it meets the needs of those it aimed to serve – the researchers and the community at large. Therefore, the team took proactive steps to involve the public right from the get-go.
Firstly, they conducted a series of public consultations. The SACRO team engaged with existing PIE groups at the Bennett Institute (OpenSAFELY Digital Critical Friends group based in the University of Oxford) and Research Data Scotland, among other critical stakeholders such as the Medical Health Research Council, Health Authority, Office for National Statistics, GESIS, Stat Canada, NHS Scotland, NHS Digital, international cancer research charities and others. The SACRO team’s engagements were conducted primarily through public consultation rounds, workshops, and email communications, with specific attention paid to inclusivity and collaboration, accommodating diverse perspectives.
Secondly, the SACRO team created an inclusive platform for ongoing public dialogue through a regularly scheduled online meeting that serves as a space for the public to voice their opinions, ask questions, and share ideas throughout the project’s lifecycle. The team has ensured that information shared in these meetings is public-friendly and accessible, ensuring that anyone and everyone can participate effectively.
Midway Through: Sustaining Public Involvement
As the SACRO project moves from its early days towards the midway point, the team continues to prioritise public involvement. They understood that sustained public engagement would be key to the project’s success, so they took measures to keep the momentum going. One such measure was the implementation of regular public updates via Medium. The SACRO team regularly shares updates on the project’s progress, challenges, and victories via its dedicated Medium page. This transparency has not only kept the public involved but also fostered trust and faith in the project.
Another step is the continual refinement of the project based on public feedback gathered from three members of the public who sit on the SACRO Steering Group. These public contributors were recruited from the OpenSAFELY Digital Critical Friends Group and Scottish Centre for Administrative Data public panels and have attended regular steering group meetings, making input in the project’s areas of focus. This iterative process has ensured that the project stays relevant and responsive to public needs and expectations.
The findings from the SACRO project’s ongoing literature review, enriched by valuable insights from relevant stakeholders and public panels, will inform the work on output checking going forward.
Reflecting on the Journey So Far
Looking back at the journey thus far, it’s clear that public involvement and engagement have been integral to the SACRO project. From shaping its foundational principles to refining its course, the public has played a pivotal role in the project’s development. Moreover, this public engagement has not been a one-way street. The SACRO team has also made concerted efforts to give back to the community. They have done so by sharing knowledge, fostering dialogue, and creating a sense of ownership among the public.
As the project continues to forge ahead, it carries with it the invaluable contributions of the public. The SACRO project is a testament to the power of collaboration and the promise of a future where research findings can be shared more swiftly and securely, thanks to the input of the very people it seeks to serve.