RWE 201 – UK – NHS England – Federated Data Platform – Lessons Learned from the General Practice Data for Planning and Research Initiative

NHS England – Federated Data Platform:

The National Health Service (NHS) in England is in the process of procuring a Federated Data Platform (FDP), aiming to streamline IT systems and improve healthcare delivery. However, the initiative has come under scrutiny, particularly around ethics, privacy, and commercial involvement. The National Data Guardian’s role is to offer advice and ensure that the NHS maintains public trust, especially concerning data management.

Public concerns mainly revolve around commercial interest in NHS data. Research indicates that the public is generally open to commercial involvement if conditions such as transparent communication, public benefit, and adequate safeguards against misuse are met. Previous initiatives like the General Practice Data for Planning and Research (GPDPR) serve as cautionary tales. Lack of communication led to misinformation and resulted in a significant number of people opting out of data-sharing, negatively affecting health research and planning.

To avoid repeating past mistakes, the National Data Guardian advocates for meaningful and open dialogue between NHS England and the public. They outline three key focus areas:

  1. Value to Patients and the NHS: Clearly communicate the FDP’s purpose and benefits. Answer critical questions like the scope of the program, public choice in data sharing, and how it solves real-time problems in healthcare delivery.
  2. Integrity of Decision-making: Given the sizable contract and existing relationships with potential suppliers, the NHS must demonstrate a transparent, fair procurement process. Information should be provided about who makes decisions, how they are made, and how safeguards are in place to ensure fair competition.
  3. Relationship with the Supplier: The public needs assurance that NHS maintains control over the data and the system. This includes clarifying what data the supplier can access and the safeguards against misuse. Concerns about vendor lock-in and the ability for the NHS to terminate partnerships without compromising patient care or incurring significant costs should also be addressed.

In summary, the key to the FDP’s success lies in transparent, meaningful engagement with the public and healthcare professionals. Filling the existing knowledge gap with accurate information can quell mistrust and speculation, thereby earning public trust for a smoother implementation. Open communication, even when there are no complete answers, can prevent suspicion and ensure ongoing public support for the FDP initiative.

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