How we can build bridges between the NHS Federated Data Platform and the public

In a recent extended blog post on the national website of the UK, Dr Nicola Byrne, the National Data Guardian (NDG), delved into the intricacies of the NHS Federated Data Platform (FDP), emphasising the significance of effective communication and engagement with the public to foster trust and understanding.

The NHS, while making strides in IT advancements and data utilisation, hasn't been without its share of hiccups and failures. Initiatives like General Practice for Data for Planning and Research (GPDPR), Care Data and the National Programme for IT serve as poignant lessons from history, underscoring the need to prioritise transparent communication and collaboration with the public and healthcare professionals regarding data management.

Dr Byrne, in her capacity as the National Data Guardian, asserted her commitment to preventing further setbacks and challenges on the road to progress, stating: "What role can I play in ensuring that those lessons from history have been learnt?"

This question takes on heightened importance in the context of the NHS Federated Data Platform, a project currently in the procurement phase under NHS England.

The NHS Federated Data Platform holds the promise of interconnecting various IT systems within the healthcare and caregiving domains. This interconnectivity aims to empower frontline healthcare workers and administrators with secure access to critical tools and information, streamlining care coordination, planning and delivery.

The potential transformative impact of this system on the NHS's efficiency and long-term sustainability is undeniable. However, it has not been immune to scrutiny and scepticism, warranting a deliberate and well-considered response.

Dr. Byrne's extended blog serves several key purposes:

1. Addressing Concerns: The NDG acknowledged the public's apprehensions and questions concerning the FDP programme and confirmed that these concerns have been brought to the attention of NHS England.
2. Guiding Effective Communication: Dr Byrne offers invaluable advice to the system on how it can cultivate bridges with both the public and healthcare professionals through forthcoming communication and engagement efforts.

The blog highlighted the evolution of Dr Byrne's thoughts on the FDP programme since her last publication in November. During this period, she maintained ongoing consultations with governmental bodies and NHS leaders while also engaging with individuals who expressed more cautious and sceptical viewpoints. This inclusive approach reflects her dedication to encompassing a wide array of perspectives.

One particularly contentious aspect of the FDP programme revolves around the involvement of certain commercial entities, with Palantir being at the centre of the controversy. Public sentiment towards private companies' engagement with NHS data is nuanced, and Dr Byrne underscored the importance of leveraging existing research to guide these discussions.

The research focused on public perceptions of commercial participation in NHS data utilisation revealed several critical factors that influence public opinion:

1. Communication and Transparency: The necessity for authentic and transparent communication is paramount. When these elements are compromised, the void left by insufficient information can become fertile ground for misinformation and mistrust.
2. Clear Rationale: The rationale for commercial involvement must be comprehensible and justifiable to the public.
3. Trustworthiness: External organisations involved in commercial ventures must demonstrate their trustworthiness to the public.
4. Public Benefit: Public benefits stemming from commercial involvement should outweigh the commercial gain.
5. Safeguards: Robust safeguards must be in place to prevent improper use of data.

The National Data Guardian draws attention to the General Practice Data for Planning and Research program, which suffered due to communication and transparency shortcomings. Insufficient engagement with public concerns resulted in knowledge gaps that were exploited by alternative narratives, ultimately leading to opposition and reduced trust.

Dr Byrne warned that rising opt-out rates could be detrimental to national health research and planning efforts. Some individuals have historically utilised opt-outs as a means of expressing their reservations about data handling. If these rates escalate substantially, it could hinder critical advancements in healthcare research.

In conclusion, Dr Nicola Byrne's extended blog provides a comprehensive insight into the intricate dance between the NHS Federated Data Platform, commercial involvement and public engagement. Her emphasis on transparent communication, clear rationale, trust-building and safeguarding resonates with the broader context of digital transformation in healthcare. By heeding these lessons from the past and embracing a collaborative approach, the NHS has an opportunity to foster public trust and catalyse positive change in the healthcare landscape.

In a bid to address concerns surrounding the NHS Federated Data Platform (FDP), Dr Nicola Byrne, the National Data Guardian (NDG), has penned an extended blog on the national website of the UK. This comprehensive piece acknowledges the reservations of the public and outlines strategies for the NHS to engage effectively and build trust in its data-handling initiatives.

Over the years, the NHS has taken significant strides in improving its IT infrastructure and data management practices. However, a history marred by setbacks and failures, including initiatives like General Practice for Data for Planning and Research (GPDPR), Care Data and the National Programme for IT, serves as a stark reminder of the importance of open communication and public engagement to maintain trust in the handling of sensitive healthcare data.

Dr Byrne, as the NDG, emphasised her commitment to preventing further setbacks and fostering progress. She underscores the role she envisions for herself in ensuring that lessons from past initiatives are not forgotten. The central focus of her blog is the NHS Federated Data Platform, a programme currently being procured by NHS England with the aim of integrating various IT systems across the healthcare landscape to enhance coordination, planning and delivery of care services.

While the FDP holds great potential for transforming the NHS and ensuring its sustainability, Dr Byrne acknowledges the negative attention the programme has attracted. In response to these concerns, she sets out to address them through her blog:

1. Acknowledgement and Reassurance: Dr Byrne assures the public that she has heard their questions and concerns about the FDP and has raised them with NHS England.
2. Advice for Effective Communication: Dr Byrne offers guidance to the system on how to engage with the public and professionals, emphasising the importance of forthcoming communications and engagement efforts.

Since her last publication on the FDP in November, Dr Byrne revealed that she has continued to engage with government officials and NHS leaders, while also taking note of cautious and sceptical voices.

Concerns from various quarters – including the public, healthcare professionals, journalists, MPs and campaign groups – touch on ethics, privacy, success likelihood, procurement and cost. The choice of potential commercial suppliers, particularly Palantir, has further fuelled contentious debates.

To inform discussions on commercial involvement and the use of NHS data, Dr Byrne references existing research on public attitudes. While most studies focus on scenarios where commercial companies seek access to NHS data for research and innovation, the principles outlined in this research also hold relevance for the FDP programme.

The public generally supports commercial involvement under certain conditions, including authentic communication, transparency, a clear rationale, demonstrated trustworthiness, proven public benefit and safeguards against misuse.

Dr Byrne underscored the pivotal role of transparent communication in garnering public acceptance. She cited the example of the General Practice Data for Planning and Research programme to illustrate the consequences of poor communication and transparency.

A lack of trust can lead to speculation, misinformation and opposition, potentially resulting in higher opt-out rates. The rise in opt-outs not only jeopardises healthcare research and planning but also reflects a lack of confidence in data-handling initiatives.