Supporting meaningful patient and public involvement in digital diagnostics

The National Pathology Imaging Cooperative (NPIC) is transforming pathology services, supporting the transition from traditional microscope-based examination to AI-enabled digital pathology. It is a unique collaboration of universities, hospital trusts, and industry partners largely located across the North of England.

By developing and researching artificial intelligence (AI) tools, NPIC is enabling earlier and more accurate diagnoses. For conditions like cancer, this precision is life-changing; it means identifying illness at a stage where treatment is most effective and outcomes are significantly better.

NPIC is a flagship example of the NHS’s shift to digital, transforming pathology from microscope-based, analogue processes to fully digital systems. This enables innovation, data sharing, AI-enabled diagnostics, and large-scale research that can improve care nationally.

However, technology alone isn’t enough. Fundamental to the success of their work is patient and public engagement. Co-creation and ongoing patient feedback ensures that digital transformation is understood, meets real needs, builds public trust, and promotes equity.

Our role in setting up the Patient and Public Engagement Group

From the outset, the NPIC leadership team was adamant that their work needed to genuinely involve the people using the services, represented by people with lived or other relevant experience.

To fulfil this ambition, we have supported NPIC with their patient and public engagement since 2020 through the creation of a Patient and Public Advisory Group (PPAG).

The PPAG ensures that NPIC’s approach is inclusive, informed, ethically sound and safeguards people’s rights. It is an instrumental tool to better understand current public views, adopt a co-production and collaboration approach for the creation of public-facing communications, and create opportunities for public debate and discussion about the future of AI-enabled diagnostics.

Since its inception, we have run 26 meetings. These sessions aren’t just ‘tick-box’ exercises; they involve deep dives into complex topics such as:

• Data security and assurance.
• The ethical implications of AI in healthcare.
• Creating accessible public-facing communications.
• Reviewing new research projects and partnerships.

To ensure maximum contribution from all the members of the group, we have helped develop their knowledge and skills through workshops and focus groups. Our involvement has supported NPIC to regularly gather authentic patient insights through group sessions or one-to-one conversations in a safe and comfortable environment.

For pathologists, engaging with the PPAG offers a valuable reality check, reminding them of the patient journey beyond the lab walls. For the public, it’s an opportunity to influence policymakers and ensure public money is invested wisely.

Helping shape grant applications

A key area where the PPAG adds value is in grant applications. Funding bodies increasingly require a ‘lay summary’ and evidence that the public has helped design the innovation.

An example of this work is the development of a grant application for a triage tool for lymphoma diagnosis. Lymphoma can be notoriously difficult to identify when the primary source of the cancer is unknown. The PPAG helped shape the research proposal to ensure the study is understandable to the public and clearly demonstrates the benefits to patients. Their input ensured that the ‘human element’ remained central to a highly technical digital tool.