COPY [control of patient information], the emergency measure that allowed much greater sharing of healthcare data, will come to an end on June 30 2022. But are healthcare organizations ready? Hazel Jones, head of health at Made Tech, tries to answer.
In March 2020, the Secretary of State for Health and Social Care issued NHS Digital with a Notice under Regulation 3(4) of the Health Service (Control of Patient Information) Regulations 2002 (COPI) to require NHS Digital to share confidential patient information with organizations entitled to process this under COPI for Covid-19 purposes.
In the letter to NHS Digital, the health secretary explained that the emergency measures would be put in place to “manage and mitigate the spread and impact of the current outbreak of Covid-19”.
After two years and three extensions, the current COPI notice will expire on 30 June 2022. Unless the health secretary deems it necessary to extend it once again. But that looks unlikely.
Data in the time of pandemic
We know that sharing of patient data is a sensitive area of healthcare. And of course, patient information processing must be properly scrutinized from an ethical and public protection point of view. The pandemic changed everything. We saw in real time the need for healthcare organizations to be more resilient, agile, and innovative with good data at the core. There was widespread acceptance that data was the central weapon in our Covid-19 armour. While the public didn’t perhaps know about COPI, there was the expectation that government and healthcare organizations would have access to the data they needed to protect the public.
In healthcare circles we knew that the COPI notices had made a demonstrable difference to our understanding of the pandemic and therefore our ability to fight back. Giving researchers improved access to primary care data that would have been difficult to obtain without the COPI notices. Or the use of AI to study and predict oxygen needs of Covid patients in the first days of care, using data from across the world.
Even as one of the last Covid-19 measures to be retired, what will the end of COPI mean for healthcare delivery? Without expedited access to primary healthcare data how would we fare against other infectious disease outbreaks and public health emergencies.
And outside of emergency measures, will the end of the COPI notice mean that the innovation we’ve embraced throughout the pandemic will slow down? At a time when the healthcare system needs it the most.
Data really can save lives
The Covid-19 RECOVERY trial was hugely dependent on cross-organizational data sharing. NHS Blood and Transplant needed to reach Covid-19 patients in order to harvest potentially lifesaving plasma. Access to data allowed targeted communications to be sent to prime candidate donors, something that would have been a multi-million pound activity and delayed progress substantially had they needed to find those patients via national campaigns alone.
The same is true of NHS Test and Trace, automating testing and results protected the frontline from being overwhelmed. And, undoubtedly saved lives as those potentially impacted were advised, enabling them to isolate themselves.
Research will be significantly impacted as current legislation provides for sharing only for the purpose of direct care. Access to, and freedom to process data, has demonstrated the potential of a ‘learning health system’ that can effectively address complex population-level healthcare. Population data modeling at scale can identify trends such as morbidity compounded by health inequalities in developed nations. And the impact of co-morbidities on outcomes or progression of Covid-19. These insights inform policy and priorities that are vital in the design of a future health system that is able to manage future pandemics and beyond.
Trust, technology and collaboration
Public appetite for data sharing relies on trust. Trust of the Government, the healthcare system, and ethical standards for use of data. It also relies on reward. That the benefits outweigh the risks, as data sharing inevitably involves degrees of risk. If we know that greater access to data improves healthcare outcomes and can improve population health then we need to act now in considering technologies that are designed to interoperate. Recognizing that we need a balanced agenda that safeguards personal information and enables the use of data to improve public health with empowered ethics and governance systems that provide trusted and impartial oversight.
But what of the practicalities? Gaining approval for research based uses of data is only one part of the journey. Technology systems need to play their part, reducing healthcare’s reliance on the legacy systems that lock vital patient information into proprietary formats and platforms or individual health and care settings. We need systems and platforms that are designed to enable interoperability and secure data-sharing.
Data on its own can’t deliver innovative solutions. We also need to be much better at cross-organizational collaboration. Reusing and sharing solutions built for common problems and pooling knowledge and data to allow the NHS to evolve healthcare technology that can be shared freely, without vendor lock-in.
Embracing the opportunities brought by the COPI notice
The end of the COPI notice serves as a watershed moment for healthcare, emerging from the emergency of the pandemic. While it’s important to recognize that it was put in place for Covid-19, we need to think ahead to future pandemics and syndemics and consider the real life benefits it brought in terms of innovation and patient care.
For healthcare organizations it’s a chance to re-think how they will use and share their data going forward and an opportunity to embrace open data principles and collaboration so we continue to improve health and care delivery.